Cushing's with weakness on one side only

[Tuffy]

Tuffy, our 10 year old Italian Greyhound, has had Cushing's symptoms for several months before he positively diagnosed by our local veterinarian with the ACTH stim test three weeks ago. We took him to UC Davis last week and they agreed with the diagnosis and started him on 10 mg Triolstane twice a day. We are to return Davis for a repeat ACTH stim in one week. We are praying that we can get the Cushing's under control without causing him to much harm with the Triolstane.

The other worrisome thing going on is that he has significant weakness in his right legs with occasional knuckling, while his left side appears to be normal. This has come on gradually as the Cushing's symptoms worsened. But UC Davis didn't thing it was related to the Cushing's. They though it was more likely a separate neurological issue, suggesting it was possibly a slipped disk from an injury or a tumor in his neck (C1-C5). He doesn't show any signs of having neck or back pain. But they are recommending that we do an MRI. Has anyone else seen weakness on one side only with Cushing's. It's hard to believe he could have developed two major unrelated issues simultaneously.

Thanks

Tuffy's mom an dad

[mytil]

Hi and welcome to our site.

I am sorry you and your pup are having to go through this.

UC Davis has a good reputation so I do not mean this to sound counter to anything they may have mentioned. But only an ACTH test to confirm Cushing's does not conclusively diagnose Cushing's in my experience. Were other tests performed - i.e. LDDS, ultrasound to get a good look at the adrenal glands, blood panel to check elevations?

What were the symptoms you saw that pointed towards Cushing's (increased thirst, hunger, pigment changes in the skin, hair loss etc)?

Regarding the weakness on one side, I will say that Cushing's does cause muscle weakness, but there could be other issues going on too, because it is just on one side. I do not know if their search for what you mentioned could be found with an x-ray or ultrasound (much cheaper than a MRI) but I would ask them.

Does your dog seem to be in any pain? Possibly banged himself somehow?

Keep us posted
Terry

[Tuffy]

Hi Terry:

Thank you for your reply. We did actually have other tests run, urine cortisol, ultrasound, a complete hormone assay, metabolic panel with CBC and although they usually do run a LDDS test because Tuffy has all the symptoms, thin skin, pigment changes, loss of hair resulting in a nearly totally bald dog, pot belly, weak legs/joints, ravenous appetite resulting in eating his poop and going through trash, excessive thirst, constant peeing and pooping, hypothryoidism, can't jump, panting, and more the doctor we saw at Davis walked into the room and took one look at Tuffy and said, this dog has such an obvious case of Cushings that although we normally run a LDDS test I think it is far more important at this point to treat him immediately for Cushings before he gets worse. Then she pointed out things to a student which indicated Cushings along with our info. We just hope it isn't to late for him to get better. Tuffy's mom

[frijole]

Hi and welcome. You are in good hands at UC Davis. Please know that most of us discovered cushings by accident and probably many years after our dogs first got it... I am sure your dog, once treated, can live a normal and happy life. Kim

[mytil]

Thank you so much for posting the additional information. It does sound thorough.

I have seen very severe cases of Cushing's turn around with medication. It takes time and each symptom may abate differently.

I am sure you have seen all of this, but just in case here is a link to treating with Trilostane - http://www.k9cushings.com/forum/showthread.php?t=185

Please keep us posted about his weakness.
Terry

[Tuffy]

Hi Terry:

Thank you for the link. I've hesitated to ask you this as I don't want to bring up any sadness for you but you have a picture of a lovely dog that says in memory of. I am so sorry for your loss. Did Mytil die from Cushings?

Tuffy's mom

[Tuffy]

Thank you Kim. Your dogs are such a pretty shade of gray and so attentive looking.

[Tuffy]

Hi this is Tuffy, well Tuffy's mom. Tuffy is our ten year old Italian Greyhound who has been on Trilostane for a week now and we haven't seen any improvement in his symptoms and he seems to be getting worse. Is there a general guideline as to when to expect to see improvement changes in the Cushings Disease? Also, is it ever to late to actually treat a Cushings dog?

Tuffy was a rescue dog and came to us with a ton of injuries and infections from abuse so we didn't even see the real dog until several months after we had all his infections and injuries healed. Because we were trying so hard to make him well we attributed some of his symptoms of Cushings to a thyroid problem which took over a year before it got taken care of correctly due to incorrect dosing from one of the vets. We thought the excessive hunger was due to being starved in his life prior to coming to us. But now I think he may have had Cushings for the last three years which is how long we've had him. As soon as the thyroid problem was under control he quit jumping, started panting, and got the leg weakness and knuckling within just a couple of weeks and his hair loss became baldness. Is it ever to late for a Cushings dog to get better?

Also since he has been on Trilostane his personality has changed. He seems distant and he acts odd at times. Like jumping up from his bed as though it were a rattlesnake and running away from it in fear and cowering under my legs. Or cautiously trying to get a treat from my husband's hand from a distance and he'll keep trying until he approaches with extreme caution and then will take it from his hand. He doesn't climb into my lap anymore and he used to always climb into my lap every chance he got. Even if we had company he would climb in my lap and stay there for the whole time whether it was two hours or four. My lap was his favorite place. Since he's been on Trilostane he lays at the other side of the couch and never comes into my lap. The vet said Trilostane doesn't cause behavior changes yet this only happened after he started taking it. So has anyone else seen their dog's personality change after being put on Trilostane?

Any input on these questions will be greatly appreciated.

Tuffy's mom

[lulusmom]

Hi.

I have merged your last post with your original thread so that we can keep all of Tuffy's medical history in one place.

To answer your question, if you are seeing no improvement in symptoms, it could be that the dose is simply too low. Your vet will determine if an increase is necessary once he has the benefit of the 14 day acth stimulation test. Were you instructed to give Tuffy his dose with a small meal on the morning of the test and to have him to the vet within 3 to 5 hours of dosing?

As for behavioral changes caused by Trilostane, that is not a listed side effect and I can't remember ever seeing this problem. However, it is documented that if a dog has a macrotumor (as opposed to the majority of dogs who have a microtumor), treatment can facilitate growth of the tumor and behavioral and neurological signs would not be uncommon. Also, there are dogs that simply cannot tolerate the drug so this is a possibility as well. If you have not given your vet an update on Tuffy's change in behavior, I would suggest you call him/her asap.

Glynda

[mytil]

Hi again,

Yes, my little soul doggie Mytilda (Australian Shepherd) had Cushing's. But she passed away from kidney failure. That was way back in 2002 and she was shy of 15 years. And I have been here ever since. She too was a rescue along with her brother Clancy. Here is one of my fav pictures of them - http://www.k9cushings.com/forum/album.php?albumid=254&pictureid=1945

I am wondering if there is a connection between the Trilo and the thyroid meds at this point causing this apprehensive behavior. I do not have any experience in the combination of the two, but I would ask my vet about this too. (some dogs just do not play by the rule book :)

Keep us posted
Terry


Hi Terry:

Thank you for the link. I've hesitated to ask you this as I don't want to bring up any sadness for you but you have a picture of a lovely dog that says in memory of. I am so sorry for your loss. Did Mytil die from Cushings?

Tuffy's mom

[Tuffy]

Hi Glynda:

Thank you for merging my post. Tuffy weighs about 17 lbs. which is heavy for an I.G. and he is on 10mg of Trilostane twice a day. We take him in next week for the ACTH test. At the same time we have scheduled an MRI to see if he has a tumor in his neck but we are thinking of asking if a less expensive CT scan would work as well and would tell us how big his brain tumor/pituitary tumor is as well as the possible neck tumor.

If he has a macro tumor it doesn't sound as though he has much time left and in that case is it worth treating him? Afterall, the Trilostane is poison. I.G.'s are sighthounds and sighthounds are very sensitive to medications. We have often wondered if he doesn't feel good on the medication but like most dogs he is very stoic. If he doesn't have long to live I would like him to have as much comfort as possible. And if possible no suffering.

Tuffy's mom

[Tuffy]

Terry,

Your pictures are beautiful. Interesting question about the thyroid medication and Trilostane when I speak to the vet today I am going to ask her. So far she has only said that the Trilostane does not cause behavioral differences but Glynda mentioned that if Tuffy has a macro tumor that could be the cause. That scares me to death because my husband has suspected a macro this whole time during all the tests Tuffy has been through. I appreciate you and Glynda giving me such good advice. But I have to admit I'm really scared we're losing him and it breaks my heart.

Tuffy's mom

[mytil]

Just checking up to see if you have any test results and how things are going?

Thanks about the photos :).
Terry

[Tuffy]

Hello Again:

We have taken Tuffy for a few visits at U.C. Davis so I have not been able to get online recently. Unfortunately the news is very bad and I have just been crying my eyes out over my beloved dog. He has a rare side effect of Cushings that makes him walk like a stiff legged wooden soldier. It's called Myoplank something. Davis said it was rare but showed up in Cushings sometimes. Alas this is not Tuffy's only problem. His poor little head has a tumor the size of a golf ball which makes it a macro tumor and he has a few herniated discs in his neck and lower back which is causing the weakness/paralysis/and dragging of his paws as well as the knuckling. His latest blood test showed that his Trilostane had not improved his numbers as much as they should be improved but it had brought him into a normal range. The vet said that with Cushings dogs they like the range to be a little less than normal. We could put Tuffy through one or two surgeries for the disc problems but it would require him to be crated for six months to a year which doesn't seem like much of a life for a sweet little dog who loves to be out and with you. There is also a radiation available for the brain tumor but I've seen my dog decline so much and so quickly in just two months that I am afraid none of those options would work. We went for a second opinion and that vet said she would put Tuffy down as she did not believe that he would have any quality of life and she did not believe Tuffy would survive the surgeries. I respect the second opinion and I actually have a gut feeling that she is right because of the rapidity in which Tuffy's health has declined in less than two months. But his spirit is so sweet and he still loves to bark at visitors and run to meet them at the door, though we're trying to keep him still due to his neck and back problems. The vet said the sooner we put him down the better but it's very hard to pick a date to kill someone you love even if it is for the best. One nice thing about Davis was Dr. Alemon. She actually called to check on me and Tuffy. She said she had observed how tightly bonded we were and she was worried about us both as his outlook was not good and she was very supportive about whatever decision we would make. Considering it it a learning hospital I thought it was extremely compassionate of her to put aside her enthusiasm for surgery and radiation to check in on us and tell us whatever we decided would be the best decision. But I am extremely sad and feel like I have failed Tuffy.

[Tuffy]

Dear Glynda:

Do you know of any websites that have the Trilostane effect on macro tumors? Because the vets at Davis said there was no cause to be worried and that it would not encourage the growth of the macro tumor. But they are still learning and I thought if there was any information in a website that I could send it to them. Do you know if macro tumors grow rapidly? We were told there is no knowing how fast it will grow but they think slow vs. our vet who thinks other wise and she is a graduate from Davis. I think she is probably right as she has noticed his rapid decline in less than two months time. Any information is appreciated. Thank you.
Fawni, Tuffy's mom

[SharonH]

I am brand new here but I just wanted you to know I understand what you are going through right now. Our pug Igor deteriorated rapidly from bone cancer and knowing "when it's time" was agonizing. Now I am learning about Cushings so I can do everything I can for our yorkie Gidget who begins her treatment tomorrow. Your heart is in the right place and it seems you are doing everything you can to help Tuffy.

[Tuffy]

Hi Sharon:

Thank you for your kind words. I'm truly sorry about your pug. Is that a Yorkie you have now? It's really difficult to know the right time when a dog still seems happy and full of life. When our doorbell rang he raced downstairs, paws knuckling under and barked to sound an alarm. I was horrified as he shouldn't be walking and I had carried him upstairs because he gets so upset when I am not in the same room with him. Before he had trouble walking he would always be with me following me where ever I went. But more often than not he will fall when he attempts to walk now so I try to carry him if I need to go upstairs. He is so full of life mentally that it makes it hard to know when.

Fawni, Tuffy's mom

[lulusmom]

Hi Fawni,

I am so sorry that your visit with UC Davis didn't yield good news for your sweet Tuffy. My heart breaks for you more than you know. I just lost my cushdog, Jojo, yesterday. He also walked like stiff legged soldier due to a condition called pseudo myotonia. It's a rare condition in cushdogs but we've had more a few other dogs here that were diagnosed with it.

I found an abstract of a study done on the effects of Trilostane on pituitary adenomas. Unfortunately, the results of this study indicates that Trilostane may increase the risk of accelerating the growth of a macrotumor. :( As a veterinarian professional, your vet at UC Davis should have access to the complete study.

http://www.ncbi.nlm.nih.gov/pubmed/19041802

I hope this helps and please know that my thoughts and prayers are with you and Tuffy.

Glynda

[Tuffy]

Dear Glynda:

I am so sorry you lost JoJo. It never gets easy losing a beloved family member. My heart goes out to you sympathy. I am so sorry.

Thank you for the link. I did ask the vet at Davis about the Trilostane affecting the macro tumor and she said it didn't affect it. But I will send her the link. They are still learning at Davis and it is difficult to actually see a vet who has been in practice for awhile. As per usual, the vets we saw are really only residents in their third year and I think it is understandable that they don't know everything yet. Guess I didn't totally get the name of the stiff legged condition right either as when I looked at the notes from the vet it was the pseudo mytonia and I thought I heard her say something else. Why doesn't the Trilostane help with the pseudo mytonia when it is all part of the Cushings? Once again I am so sorry about JoJo.

Fawni

[lauraperla]

Hello Fawni,
I am so sorry that Tuffy is going through so much.
We had gait issues with Saoirse - the stiff legged soldier walk- which started when she was on vetoryl. Our IMS specialist felt they were arthritis based, predominantly in her elbows and she had pain relief medication. I also supplemented her with glucosamine and fish oils. The issues never went away but I believe she had some relief and had limited mobility.
I am not going to shy away from the big issue that you raise regarding knowing 'when'. As you know we made that decision with Saoirse this week. I also had to heartbreakingly face the same with her sister Bracken last Autumn. Bracken had cancer and in August I was told that all we could do was palliative care and I was to take it 'day by day'. Like you describe I felt 'how the hell do I do that'. I was so worried that I'd call it wrong, either she'd suffer too long or I'd make the decision too fast. So I got on my laptop and started searching. I found a couple of excellent veterinary End of Life Assessments. While I did not use these religiously, they gave me the framework, told me what to look for and how to assess fully. That information was invaluable.
Some people will say that you will know when its time, your pet will tell you. I'm not sure if thats true in every case, but Saoirse certainly did let me know. Bracken less so. I think it comes down to a combination of what your pet can take and what you, and your family can take. With Saoirse we could have let her struggle on for a few more days but felt she had suffered enough.
There is much you can do in the final precious days you have. I wiped as much from my schedule as I could, and was home whenever possible for both girls. Not sitting staring and maudlin, but creating an environment of love and care. I used soothing aromatherapy oils throughout the house, not just for the girls but for all of us too. I chatted about things and I told her what a remarkable girl she had been for us. Bracken and I curled up on the sofa and watched movies in her last few days And when the time came I told her that we would love her forever.
I know this is an incredibly tough time you face. You are brave enough and strong enough to get through this. My heart is with you in these hardest of times.
love to you both
Laura x

End of life assessments link http://www.pawspice.com/qualityoflifescale.html
Dr Alice Villalobos writes well on how we can manage End of Life

[jmac]

I am so sorry to hear your sad news about Tuffy. I can't imagine being in the position to have to make that decision when he is still feeling happy. I always think we will just know when it is the right time as well, but I have not been in a situation where that was not the case. You are in a tough spot. I would take some time to read some information about how to decide when it is time and to think about you and Tuffy and what you think is the right thing to do. It was very nice for the vet to call and check on you. It's nice to see their compassion. Again, I'm so sorry about Tuffy. You'll be in my thoughts.

Julie & Hannah

[addy]

My heart is with you as well. I have no words of advice or gentle wisdom to share, just tons of love and hugs and support. Somehow, we will all fsce this decision and make it through, as dark as it seems.

[Squirt's Mom]

Hi Fawni,

I haven't posted before but I have been reading along. The news you received is heart-breaking for us all but I cannot imagine how you must feel as each morning arrives. If it is any consolation, Tuffy knows nothing of the future other than that her mom will be there to love her every minute of her life and that is all that counts in her book.

Please know you all are surrounded by prayers, healing white light, and love from your family here at k9c.

Hugs
Leslie and the gang

[Tuffy]

Laura:
Thank you for the end of life link. We had to put down our other dog at the end of April but with him he had had such a good life and he had cancer, kidney disease, high blood pressure, deafness, blindness, and IBD and he was bleeding out so when the time came it was easy to see that he had to go so that he wouldn't suffer and I really felt that he wanted to go by that time. His last day was happy. We didn't give him any meds and his appetite returned so he had a good meal and he died in my lap. I think by that point it was harder on me than him. But with Tuffy it's different. Despite his lack of mobility he still exhibits alertness and sometimes he seems really happy. Not all the time but I suspect that is because he can't throw himself into my lap and wriggle in like a baby in my arms the way he used to. He also can't snuggle up next to me in bed the way he used to. He would get so close and he had to have his head on my pillow with me! My husband said it always looked like he was trying to crawl right into me. I think he misses not being able to do that or walk with me to get the mail. It's only a short driveway to the mailbox but he used to love to follow me down the stairs, out the door, to the mailbox and back in the house. He doesn't seem to be able to sit anymore and he can't stroke my face with his paw the way he used to but he still tries. Despite that he still gets excited when he hears my husband pull into the garage or someone rings the doorbell and he wants to run right over and greet them. Surprisingly enough for a dog that is pretty mobility limited he managed to evade me and run downstairs when the doorbell rang a few days ago. Unfortunately he paid for it later and became painful. But I couldn't believe how fast he took off! So fast that I couldn't catch him and I was telling him to stop. My company said he didn't know he couldn't move or that anything was wrong. I think he knows but he doesn't know he shouldn't be doing stairs or running around. Then this morning he was barking because I was upstairs and I asked my husband to bring him up so he'd be happy. My husband went to pick him up and he evaded him and ran right up the stairs into me. So he can really surprise you. Especially since he can't walk or run without knuckling or dragging his right paws front and back. So I sat down with him and pet him and talked to him like I usually do and although I probably shouldn't have I picked him up and held him like a baby since he can't do that by himself anymore. I did not teach him that move and I never knew a dog would do that. But Tuffy always did. Anyway when I held him that way today he looked very happy and gave me lots of kisses. I really appreciate the link because I think it will help me in this situation. I haven't tried aromatherapy but I will look into it. We have a lot of places around here that sell aromatherapy products. I do tell Tuffy everyday how much I love him and will always love him and how he is my special dog. But I've always done that. I've just been doing it more often throughout the day and going over all the great things he has done that I really loved. Like his cheerful happy go lucky personality. He wasn't always that way but once we had the infections and dental problems and the problem with his leg that has a metal rod in it fixed he started to come through. He had such a bad life until we got him but I was very busy taking care of the one we lost in April for the last three years so even though I spent special time with Tuffy, alone time, I feel like I failed him by not being aware sooner that there was a problem. It seems that we were working so hard to get all his problems fixed when we first got him and then he got thyroid disease that we just didn't recognize the Cushing symptoms. At least not as much as we should have. I did mention his symptoms to my vet a few times but she kept saying it was the thyroid problem and that took two years to fix due to some errors on their part. Then when I brought up new symptoms I was told it was grief over the other dog and I kept saying it wasn't because they weren't close. But I'm not a vet so I figured they should know if there was something going on by what I mentioned and they didn't think anything was the matter aside from thyroid disease. So I think I failed him big time. It wouldn't have changed the outcome but he could have been treated sooner for the Cushings and then maybe he wouldn't have gotten the disk problems as we think he got them by jumping and falling down pretty hard to get his food which he was always ravenous for. He didn't seem in pain and we didn't feel any broken bones so we thought he was alright. But we didn't know he had Cushings at that time or that Cushings causes such an excess of cortisol that a lot of pain, especially arthritis pain, isn't felt if the Cushings isn't treated and under control. We didn't even get any pictures of Tuffy until this month and I feel bad about that because I would love to have a good head shot of him to wear around my neck. It would have been nice to have pictures of the way he used to put himself into my arms like a baby too or the way he would snuggle on the pillow with his head next to mine because those were so much Tuffy actions. People would always comment on how he would get into that baby position and how they had never seen that before and how happy he would look in my arms. Well I better go Tuffy needs to go out. Thank you so much for the link and the aromatherapy idea.

Fawni

[Tuffy]

I'm having a lot of trouble with my computer today and do not know if my messages are going through or duplicating or what. So I am going to address three of you in this message because my computer crashed when I tried to send one message earlier. But I wanted to thank Julie & Hannah, Addy, and Leslie and her gang for all of your kind words and encouragement. It really does help me to feel less alone to be able to talk to people who love their dogs and understand the situation. Please forgive me everyone if I have sent similar messages a hundred times over due to computer problems. I hope you all have a lovely relaxing 4th of July with your loved ones and fur babies.

Tuffy's mom, Fawni

[Tuffy]

Tuffy Update: Tuffy seems to be in good spirits and has a nice alert look in his eyes. He is sort of catching on that he needs to remain as still as possible to encourage his disk problems to heal. He still barks when he hears noises. But I have a question for those of you who have pets on Trilostane. When do you know if they are going into Addison's Disease? We were told to notice lethargy which is difficult to recognize because of his mobility issues. We were also told to notice diminished appetite and water consumption. But Trilostane is supposed to make the excessive thirst and appetite diminish to normal anyway so how do you know when it's a bad sign? I think he has a tooth that is causing him pain and that would explain why he only wants to eat treats and soft food. But his water intake seems drastically reduced. We're having hot weather and he has not had much to drink and I've been holding up a water bowl to him and encouraging him to drink so he will take a sip or two to make me happy but he's not really drinking a lot. The most he drank today was about 20 seconds worth. I know he will eventually come down in his water intake but is this to much to fast? Aside from that we're having a really difficult time finding a date to put him down because he so obviously wants to be here. He gets up and follows me if I'm downstairs and if I go upstairs for just a minute or two he barks so I carry him up with me now and he looks very happy when I'm carrying him. Do you think his water intake is something to worry about? Thank you for any answers.

Tuffy's mom

[frijole]

I used a different drug but have been on this site for 7 yrs so... I can tell you that a drastic reduction COULD be cause for alarm. So of course... time for questions.

First off, what is Tuffy's weight and what dose of trilostane are you on?

Rather than gauge water intake by number of seconds - by chance do you have a feel for how many ounces of water he's drinking a day? Normal water consumption for dogs is an ounce of water per pound of weight daily. Some, not all, cush dogs drink gallons of water a day. Tell us about Tuffy's water consumption before taking trilo and then afterwards. Even if you never measure before you probably fill the bowl the same, or close to it, amount every day - go measure it and tell us your estimate of consumption before and after.

Even if the weather wasn't ridiculously hot, water consumption is vital as you know. If he isn't drinking water I would phone the vet and let them know. YOu could also skip a dose of trilostane to see if you can get him drinking.

The other reason for concern is that it could be that the dose is too high and could result in a crash or Addisonian state. When this happens your dog is unable to get up, hold their head up, refuses to eat/drink and you think they are dying. It is caused by too LOW of cortisol. (the opposite of cushings). When this happens you must give prednisone asap. I assume you have prednisone on hand? (It should have been prescribed along with the trilostane .. If you don't have it - call your vet and tell them you need it and will pick it up tomorrow. It is critical and can literally save a dog's life. Don't waste any time wondering if you see these signs - take him in to be checked out because dogs can die if not attended to right away.

I'm not meaning to scare you but rather make sure you understand that this is something that could happen so you are aware and prepared should it happen. You are wise to continue to ask questions - keep up the good work. Kim

[Harley PoMMom]

I agree with Kim, I would also be concerned when a drastic, sudden, decrease in water consumption is seen. I believe the normal water intake for a dog is one ounce per pound of the dog's weight.

Please keep us posted.

Sending huge and loving hugs, Lori

[Tuffy]

Kim,
Thank you so much for the information. Tuffy weighs about 17 lb. at least he was 17.9 last time we weighed him but someone thought he was looking thinner so it's possible he might be only 17 lb. now. Before or when he first got Cushings I did measure the amount of water he was drinking and it was 10 cups a day. Now his 5 cup bowl is usually left with about a cup in it but today he has not really drank a lot. I would guess about a cup and a half or 10-12 oz. I have to guess because we tried enticing him by holding up a little bowl of water to him which holds a cup of water. He is walking around though and has a bright alert look and if I need to go into the powder room he will follow me and stand there. Since I wrote the last update he has eaten a full meal so his eating wasn't as off as it appeared and he ate with his usual gusto. We do have prednisone on hand because we had read about both Cushings medications before he got put on them. I even asked the vet what dose we should give if he crashed and needed to have prednisone. She was not happy I was asking as she felt a vet should administer it but I told her things always happen when you can't get a hold of a vet. Case in point, today. So believe me I really appreciate your input and telling me what to look for. I don't think he is in crisis but I scheduled another ACTH Stimulation test for tomorrow morning so we can stay on top of things. Hearing from you provided me with a lot of relief. Thank you so much. Does the panting ever stop?

Fawni,
Tuffy's mom

[Tuffy]

Lori:

Somehow I didn't see your message. I am so sorry. Thank you for letting me know how much a dog should be drinking. I had tried to find that out before Tuffy even had Cushings or at least before we knew he had it and I was given a very ambiguous answer so I never really knew how much was normal.

Fawni,
Tuffy's mom

[Harley PoMMom]

Tuffy weighs about 17 lb. at least he was 17.9 last time we weighed him but someone thought he was looking thinner so it's possible he might be only 17 lb. now. Before or when he first got Cushings I did measure the amount of water he was drinking and it was 10 cups a day. Now his 5 cup bowl is usually left with about a cup in it but today he has not really drank a lot. I would guess about a cup and a half or 10-12 oz.

If Tuffy is drinking 10 - 12 ounces and getting canned food, then he is probably getting enough, canned food also contains water so he is getting fluids from this too.


Does the panting ever stop?

Fawni,
Tuffy's mom

It can take a while for the panting to subside. I used to spray water on Harley's belly and feet at night in bed and it seemed to help a little.

[lauraperla]

Hi again Fawni,
When we transitioned Saoirse from Vetoryl to Lysodren we had a few weeks washout when she wasn't treated at all. Her water intake quadrupled (8 litres a day !) and then fell back down to just under 2 litres a day pretty swiftly. It felt very strange not having to refill her bowl all the time.
When Saoirse's panting was heat related we would give her some ice or an icepop. Cooled her down well. She'd also occasionally pant from the discomfort of the arthritis and then the opposite, a wee but if heat to the area, seemed to help.
I hope Tuffy continues to feel brighter, I was so pleased to see he was doing better!
Laura x

[sunnie's mom]

Hi, my dog Sunnie is a 10 yr Jack Rat. She started having weakness in her back legs in April of 11. I made the rounds of vets around here.Nothing they gave helped she only got worse. We took her to Auburn Univ. in April of this year. We went through the neurology dept. because we were told she had a muscle disease. The Dr. told us he wanted to find the cause of the muscle disease and said cushings could cause it.So he started testing for that. She does indeed have cushings.He did a muscle biopsy and it came back that the cushings caused her muscle disease.We have been on Triostane 10 mg for 8 weeks now. She still has the weakness,but I am hopeful that in time it will get better.The Dr at AU said only a small number of cushings dogs have the mytonia as bad as she has it.She is also on meds for muscle relaxation.I do notice she does not drink as much or pee as much, doesn't have the pot belly and her skin is better.She was getting sores before and they were slow to heal.Hope all goes well with your dog. Keep us posted.

[Tuffy]

Thank you all for your input. I feel so much better getting answers from people who deal with Cushings on a personal level. I guess I was really stressed about Tuffy because I totally forgot that canned food contains water and he does get a lot of canned food with his kibble. Also after posting I noticed that he seems to want to drink more at night than during the day. Which sort of makes sense since it heats up a lot in our house at night and stays cool during the day.

Thank you so much for the helpful hints when Tuffy pants. We're having really hot weather and I will try misting Tuffy with water when he starts to pant as I know he will with the temperature still rising. I will also try the ice pops. Thank you!

We got Tuffy's ACTH Stim Test results back today and his number was 13.5. The vet said that we will probably have to up his Trilostane. He is currently on 10 mg. in the morning and 10 mg. in the evening. I sure hope he doesn't start having stomach upsets with the increase in his dosage. He usually starts to vomit after being on strong medications for a short time and he has done well so far but it's been about three weeks and with plans to increase the dose I am a little nervous that he will get sick. Especially since the meds used to treat Cushings are so toxic that you have to wear gloves to administer them.

Jack Rat's are bigger than I.G.'s, usually, but Sunnie is on half the dose that Tuffy is. Does that mean there are different levels of Cushings or does the amount of time a dog has Cushings before being diagnosed affect the amount of medication he/she is on? If a dog goes without being diagnosed for two-three years and has full blown symptoms would they have a harder time being brought down to a normal level of cortisol being produced in their body?

We were also told that Tuffy's Myotonia was rare but some of the people in this forum have said their dogs have it too. which makes me wonder if it is really rare or if it is starting to become more common in Cushings dogs. We were told the Myotonia would never abate so the stiff legged walk is here to stay. I used to think it was just the stiff legged walk but I think there is more to it than that. Because before he developed the Myotonia Tuffy used to be able to gently stroke things with his front paw. I think he is still trying to do that but instead of a gentle stroke it's a straight, stiff legged, poke. Hmmm maybe that is why he isn't interested in his stuffed toys anymore.

Tuffy's mom, Fawni

[Harley PoMMom]

For the tummy upset, ask your vet about trying Pepcid AC 20-30 minutes before giving the dose of Trilostane.

[sunnie's mom]

My vet likes to start off on a low dose.Sunnie hasn't had any side affects , so I guess he knows what he's doing.I thought she should be on a higher dose too at first. I could live with the stiff legged walk,it's the weakness in her back legs that hurts me so. It may never get better. She is in no pain,still happy.Eats well.So we just take it day by day. Hope things are looking up for your baby.

[Tuffy]

Thank you. I have started giving Tuffy pepcid a/c.

I can relate to the pain you feel when Sunnie walks because I feel the same way about Tuffy's weakness which has taken a bad turn over the fourth of July. Now his back legs are twisting and bending in ways they shouldn't when he walks. Last night he was crying in pain and I gave him some Tramadol and I am taking him in the vet today to see if she thinks it's the weakness and twisting of his legs that is causing his pain or if it is the herniated disks or if there is a dental problem as he has not been eating the way he normally does. If I soak his kibble in water he will eat it with enthusiasm which makes me think he might have a dental problem on top of everything else but then at times he is not eating plain canned food either so it's hard to know. He did not greet us at the door last night the way he usually does but he still went out on his own to do his business so I think it was because he was hurting. I had really hoped that keeping him as still as possible would have a good affect on his herniated disks but he seems to be rapidly declining and I think we're going to have to make a decision sooner than we thought.

Tuffy's mom

[jmac]

I am so sorry to hear Tuffy is not doing well. I hope the vet was able to give you some helpful information, or maybe find a way to alleviate some of Tuffy's pain. Please let us know what you found out when you have a chance.

Julie & Hannah

[Squirt's Mom]

Hi Fawni,

Please let us know what the vet has to say and know we are all with you in spirit.

Hugs,
Leslie and the gang

[Tuffy]

Hi Julie & Hannah & Leslie and her gang:

It look likes Tuffy might have two different dental infections so he got an injection of antibiotics. I have been busy taking care of him and haven't had a chance to get on the computer until now. I think the antibiotics have started kicking in but I will need to take him for a recheck. Our local vet does not want to extract any teeth at this time but he needs at least one extraction and she doesn't want to do it with his Cushings not yet under control. Davis seems to be of the same mind but says he could probably handle it. However, they did up his dose of Trilostane because his current dose was not bringing his numbers down and it has been a month and a half. So today I gave him his first increased dose. So far he seems okay. He is on 15mg morning and evening now so that is a total of 30 mg daily. Seems like a lot for a small dog but his numbers didn't come down so his Cushings is not as yet, controlled. Is it just me or does this disease seem really stressful to other people as well? There are tests that have to be repeated so often and the medication is a poison that can cause the dog to go into addison's so it seems very stressful to me. I worry all the time and hardly leave home unless someone can be with Tuffy because I am scared he might take a turn for the worse and need prednisone and another trip to the vet as an ER patient. Thank you for being there for me it really helps.

Tuffy's mom

[Squirt's Mom]

Hi Fawni,

I think stress is just part and parcel with Cushing's for all involved...including some of our vets! :p Just the other day, I was looking at my Squirt and remembering the days when it was so simple - feed, water, play, bath, brush, trim, yearly vet visit. Now days, everything she does merits intense consideration. :rolleyes: Drives us both batty at times. :D

My friends, for the most part, don't understand why I can't just leave my babies with the vet or a sitter for the weekend and take off with them. I would love to go and enjoy a weekend with them but "enjoy" is the key word and that wouldn't happen because I would be a nervous wreck worrying about my babies. So I stay home with them and am happy to do so. :) I reckon the day is coming when I will have more free time than I really want. ;)

Let us know how the dose increase works for Tuffy. I hope this does the trick and you see improvements very soon!

Hugs,
Leslie and the gang

[jmac]

Hi Fawni,

I just wanted to check in and see how Tuffy is doing. I hope things are going okay with you!

Julie & Hannah

[Tuffy]

Hi Y'all:

I'm making this quick because Tuffy has not been doing well and we've just been having a horrible time. So I'm spending all my time with him. So I shall try to bring things up to date as quick as I can.

1. We had to order Tuffy's Trilostane and it took two weeks so we had to get an emergency supply from another vet who would only give it to our vet which was a bit of a hassle and it still wasn't in our town.

2. We've had exceptionally hot weather and after starting Tuffy on his higher dose of Trilostane his symptoms got worse and worse and worse again. Seems like he was actually worse then he was in the beginning before being diagnosed and he was pretty bad then. So we suspected the Trilostane was ineffective due to the heat exposure. After a week or week and a half we took him in for a new ACTH Stem test to see if things were improving or getting worse. It wasn't yet two weeks but his symptoms had gotten so bad. All four legs kept splaying out flat on the floor, he couldn't stand, he was voraciously hungry and thirsty and panting. The vet I talked to said his numbers before and after were better than before so we kept him on the higher dose. But three days later we called back because we knew something had to be wrong.

3. My husband talked to a different vet who seemed very intelligent and she read off the before and after numbers and what they should be and they were actually worse than they had ever been. I think his numbers were 2.5 pre and 15 post. My husband told her we thought the Trilostane had been rendered ineffective by the heat and she thought so as well. So poor Tuffy has been suffering and his poor little skinny legs are all purple from his toes up to his shoulder and they hurt. His bruising was so bad they called us up at home to warn us not to be shocked when we came to pick him up from the test and saw his legs. The staff all felt really bad about his bruising too. We told the new vet that I had already talked to our old vet and asked her if she could carry Trilostane so we wouldn't have to have it mailed and go through this again. She said that had been verified so we asked if there was a way we could get another emergency package. This is so frustrating and stressful. Over a hundred dollars for medication that didn't even work!

4. The emergency pack only had 10 mg. tablets so we discussed it with the new vet and for the last three days Tuffy has been given 1 capsule three times a day so that he will be getting his 15 mg. dose. I notice he is very gassy like the first time we started him on Trilostane so I feel like we are starting totally over after having taken one step forward and five steps backwards. I am hoping to see an improvement tonight in his appetite. I just have the feeling it might be tonight but we'll see.

So that is where we are at in this point in time. I have been spending all my time with Tuffy because he has just been so weak and in pain and I have been afraid he would accidently hurt himself more by all his falls. So I've been bringing his food and water to him and this way he doesn't have to get up unless he needs to go do his business and we built a ramp for him so he just does his business on the ramp because he is so weak. We have ramps to the couch with fluffy, pillowy things on the side in case he falls off and we put the bed on the floor with a ramp up to it. I put pillows and blankets on the sides of that ramp so if he falls off he won't get hurt hopefully. On the funny side we probably have the only disabled dog house around. I know our neighbors think we're nuts but we love Tuffy.

Fawni
Tuffy's mom

[frijole]

Fawni, First off I send you huge hugs because it is obvious you love dear Tuffy immensely. I went and reread your entire thread and I see that Tuffy was diagnosed with a macro tumor by UC Davis right?

Are your current vets at UC Davis or were they specialists that you visited and you are seeing regular vets locally?

I am really confused by your results and also by the comment that heat rendered trilostane useless. I have never used trilostane but I have been here since it was introduced in the US and I just never heard of that. Am curious what others think about that.

I am concerned about the fact that Tuffy cannot walk/get up yet has a voracious appetite. The appetite signals cushings is not under control but the inability to walk is something else. Did the vet mention or think that perhaps the macro is causing these problems? You mentioned Myotonia and you are right - we do see it with cushings and that could explain it but the way you described Tuffy's episodes I'm not sure... Would be so much easier if we could SEE firsthand.

Please know we are sending warm thoughts and love your way. Give Tuffy a big kiss from me. Kim

[labblab]

I am so sorry that Tuffy has been having such a hard time, and I surely hope that he quickly shows improvement on the increased dose. I did want to pop in to say that, yes, excessive heat or cold can definitely alter the effectiveness of medication. So I'm guessing this summer's extreme heat may actually be creating problems for a lot of folks, especially those who are ordering meds by mail and those meds are spending time in an oven-baked mailbox or on a sunny porch. :(

Re: trilostane in particular, here's the storage recommendation published by the manufacturer of brandname Vetoryl:


Store at controlled room temperature 25°C (77°F) with excursions between 15°-30°C (59°-86°F) permitted.

And here's an article from the NY Times that discusses just how much damage excessive heat or cold can do to meds:

http://www.nytimes.com/2011/08/16/health/16consumer.html?pagewanted=all

Given this summer's extreme heat, I encourage anybody who's ordering meds by mail (or even just storing meds in their house) to check with the pharmacy which is supplying the meds to see whether temperature is an issue. If so, to try to put a delivery plan in place, like maybe placing a cooler on the steps for the meds to be delivered into.

Marianne

[molly muffin]

Oh poor Tuffy! What a good mommy you are. Hoping for the best with the Trilostane and seeing improvements soon.
Keeping you in our Hearts.

Hugs,
Sharlene and molly muffin

[frijole]

Marianne, I just wanted to point out that you were saying that the meds were in effective due to getting hot during transport. I'm sorry, I thought we were having a discussion as to whether or not the drugs worked on dogs when it is hot outside (as in the dogs are hot). Just wanted to clarify. !!! Kim

[Tuffy]

Hi Everyone:

I'm just grabbing a minute here but I wanted to let you know how much I appreciate all of your messages and advice. It really does help to talk to people who understand what Cushings is.

Kim, in answer to your questions, Tuffy does have a macro tumor and the vets at Davis said that could affect his behavior and cause the knuckling when he walks but not the lets collasping and splaying out awkardly. We went to Davis to see specialists because our local vets have had little experience with Cushings and I actually argued with our local vet to get Tuffy tested originally. I don't usually argue with people but I looked up Cushings on the web and he had all of the symptoms so I made a list and gave it to my vet and said that since he had all of those symptoms I did not believe he had a urinary infection. But she insisted and she was the one with the medical license. Then she insisted he had heart problems and prescribed plavix. She was wrong on both counts so by the time Tuffy was correctly tested I felt to much time had been wasted and my husband and I took Tuffy up to Davis to get expert advice. At Davis the vet took one look at him and said there was no point testing him because it was so obvious by looking at him and seeing him walk that he was a Cushings dog and prescibed Trilostane which is also known as Vetoryl. At that time we were told not to let the Trilostane get to hot or it would be rendered ineffective. Since we do not live close to Davis and since Trilostane is not carried by the local vets, we had to mail order it from Davis. We have a good relationship with our local vets so when we found out that the Trilostane that came through the mail was ineffective we asked our local vet to carry it for us. We wanted to make sure that the Trilostane would never be in question again. Fortunately, our vet is now carrying it for us. We do see our local vet pretty regularly. When Tuffy was diagnosed one of the newer vets made a comment to us that they knew we would do our utmost for Tuffy because we had done that for our other two dogs and we had established a reputation among the vets. It was kind of strange to have someone you just met tell you that. Anyway it's the medicine that is rendered ineffective if it gets to hot and not if the dog gets to hot.

We are not seeing an improvement in Tuffy's symptoms yet and he has now been on the effective Trilostane for a week. But as I write this he is downstairs panting like crazy. He has lost a lot more hair. Not that he had to much more to lose but now his ears are bald in the back. He still has a voracious appetite too. He is on a 30 mg dose of Trilostane daily and he weighs 17.3 lbs. I don't know if his macro tumor could be making his symptoms not dissipate or if he will need an even higher dose later on.

Marianne, I love your idea of putting out a cooler. I don't think I ever would have thought of that. Although our local vet is going to carry the Trilostane for us I will keep that in mind because you never know if you might not need a cooler for some other mail order medication.

Thank you all for your support, advice, and good wishes for Tuffy. I'm going back down to him now and will try and get back online in a day or two. Enjoy your fur babies.

Fawni, Tuffy's mom

[molly muffin]

Oh my, what an ordeal this has been trying to get Tuffy diagnosed. Did the people at Davis say anything about how long time you might see a change in Tuffy's symptoms?
Hoping Tuffy gets much better soon. You're a darn good mom! Glad you thought to take him to Davis to get checked.

Hugs,
Sharlene

[Squirt's Mom]

Hi Fawni,

Just popping in to see how Tuffy is doing. Hope things have calmed down a bit for you all and that you are able to enjoy your sweet boy.

Hugs,
Leslie and the gang

[Tuffy]

Hi Everyone:

After a very tiring time with Tuffy I am able to take a break while my husband stays with him. Tuffy continues to worsen and yesterday we took him in for another ACTH Stem Test. The results were worse and he is on good medication now that has not been heat exposed. His baseline number was 5.4 ug/dl and his post number was 17.6 ug/dl. I've put together a chart and from diagnosis to this last test he has been put on Trilostane, increased doses of Trilostane, and yet his ACTH Stem tests continue to worsen both in the baseline and post numbers.

His legs are so weak that he falls every time he stands up and he can barely stand to pee. Actually he fell doing that the other day it was so pitiful. We have foam and blankets and pillows and ramps all over the house. An elderly woman told me she couldn't stop by because she could not manage to get around all the stuff for my disabled dog. I told her it was hard for us as well but we were trying to protect him as much as we could. A lot of times I see him wriggling his body trying to get to something while he is laying down. Mostly he lays down.

I know that Trilostane causes Macro tumors to grow faster and I discussed this with our local vet who told me that any of the Cushings meds would do that because as the Cortisol levels dropped the Macro tumors were given more leeway in growing. I guess the Cortisol somehow slows the growth of the Macro tumors down. But if that is the case why isn't Tuffy getting any better? He is on 15 mg. of Trilostane twice a day and he weighs 17.9 lbs.

Has anyone experienced worsening symptoms despite medication for Cushings? Does anyone know if this is something that happens often? From some of the threads I've read with other people I have not seen this mentioned but I haven't been able to follow as many threads as I would like do to spending most of my time with Tuffy.

My husband and I are both so frustrated and depressed that despite the increased meds Tuffy continues to worsen.

Well Tuffy just fell again and my husband is calling so I have to go but I will try and get back on later.

Fawni, Tuffy's mom

[addy]

I Know how frustrating it is and I am so sorry. Others will be along soon to comment but with a post of over 17ug/dl his cortisol is not being controlled at your current dose. I dont know your history so cant comment further and I am not familiar with macros and Trilostane doses.

My Zoe weigh 17.5 pounds. She is on 40 mgs once a day and her post is 9.2. I dont know if she has a macro or not and I will most likely have to increase her dose as she has a tendancy to pogo up.

I am so glad you were able to take a break. We need those so much.
Try to get as many as you.:):):) It is easier to cope.:)

What did your vet say about the ACTH results?

[molly muffin]

Hi,
Gosh, doesn't sound like the cortisol is really under control at the moment. If they are looking to control that, then it could be that the Trilostane dosage would have to be raised. However, if he has a macro tumor and it is growing at an alarming rate, then dosage and continued dosage is something that you are probably going to have to think about going forward. What will give him the best quality of life and maybe that's a question you will want to ask your vet about. I know this is terribly difficult to go through and seeing Tuffy falling is hard. We're here though, right with you.
I expect some of the others will be by who are far more knowledgeable than myself.

Hugs,
Sharlene

[Tuffy]

Addy, it was nice of you to share the dose that your dog is on. I found that helpful as I thought maybe Tuffy was on a super high dose with no results. Well there are no positive results yet but I was thinking only Tuffy took that much Trilostane so it's a relief to know that other dogs who weigh the same or close are on similar doses.

Sharlene, you raised some good points and I am waiting for a call back from the vet to ask about a new game plan. We went out and bought Tuffy a new bed because he could no longer manage stepping over the rim of his old bed. He has a difficult time in his new bed but we've been helping him to get in and it is lower in front. He seems to really like having a bed that gives him more support now. It has orthopedic form in it so he can slide himself in on the sides. I have to say I am glad the new bed made him happy because aside from giving him a lot of love and spending nearly all of my time with him I don't know what else to do to make him happy.

Fawni

[lulusmom]

I know that Trilostane causes Macro tumors to grow faster and I discussed this with our local vet who told me that any of the Cushings meds would do that because as the Cortisol levels dropped the Macro tumors were given more leeway in growing. I guess the Cortisol somehow slows the growth of the Macro tumors down. But if that is the case why isn't Tuffy getting any better? He is on 15 mg. of Trilostane twice a day and he weighs 17.9 lbs.

Has anyone experienced worsening symptoms despite medication for Cushings? Does anyone know if this is something that happens often?

Hi Fawni,

I'm sorry for not checking in with you sooner but hey, better late than never, right? :D

Unfortunately your vet is correct in telling you that trilostane can facilitate the growth of a macro tumor. Studies have shown this so it's possible that the weakness you are seeing is neurological as opposed to clinical symptoms associated with muscle wasting caused by high cortisol. Muscle wasting can be severe for some dogs and your vet should be able to make an educated guess based on Tuffy's physical appearance and bloodwork. Creatinine levels can be falsely lowered by severe muscle wasting. Are Tuffy's hind quarters boney looking? Does he have any symptoms that look like dementia? Did UC Davis confirm a macro tumor via an MRI?

I realize it's frustrating to see no improvements and continued high cortisol but if all of Tuffy's symptoms are due to high cortisol as opposed to a macro tumor, a change in dose could make a positive difference. An adjustment could also make a negative difference. Cortisol is the body's natural anti-inflammatory so the more you lower the circulating cortisol, the greater the risk of increased neurological signs due to increased cranial pressure from the enlarging tumor.

Yours is a very difficult position to be in and my heart goes out to you. If your vet is experienced with cushing's and macro tumors, you really need to rely on him to guide you. If he doesn't have the answers for you, ask him to consult with a specialist. Most general practitioners have an internal medicine specialist they call when they need help with cushing's and other complicated disorders.

Thanks for keeping us posted. I'll be looking for your updates and in the meantime, you all remain in my prayers.

Hugs,
Glynda

[Tuffy]

Hi Glynda:

Davis did an MRI that showed Tuffy has a Macro tumor. His hind quarters are boney. But Italian Greyhounds do have boney legs. However, his rear now has two bones sticking out that I don't remember seeing stick out back in December. So far he does not act like he has dementia. But I think he is pretty miserable. Our local vet and I think he would be better off if we put him down but my husband does not see this yet. She mentioned five standards of a quality of life but she had to dash off to another appointment so I don't know what they all are. I do know that 1. Is being able to walk and he can't do that. 2. Attitude and I don't think he is happy. 3. Pain He has pain. I don't think 3 out of 5 is a good sign. The vet at Davis is acting like there is no point in treating him so she doesn't answer phone messages or emails in a timely manner anymore although she was terrific until they diagnosed the Macro and his disc problems. If Tuffy's neurological symptoms are increasing and it sounds as though they could be, would that prevent the Trilostane from showing an improvement in his ACTH Stem Test numbers? The vet at Davis said to have blood work done to see what his electrolytes are. I don't know how that applies except that she said if they weren't right we shouldn't up the Trilostane. Thank you for the helpful information. I hope I never see another dog go through this.

Fawni

[molly muffin]

Oh Fawni, I'm so sorry that it has reached this point for Tuffy. Sometimes they just keep trying even if they are in pain and unhappy. Just because they want to make Us happy. That is one of the wonders of these creatures that we have all come to love so much. They just seem to be a fountain of giving that never runs dry. Sending you huge hugs and a rub for Tuffy.

Sharlene

[lulusmom]

Hi Fawni,

As promised, here is a post I made to another member which includes a link to the Latham Foundation's excellent article entitled Quality of Life to the End of Life. Please share this with your husband.

http://www.k9cushings.com/forum/showpost.php?p=77064&postcount=1817

(((Big Hugs)))
Glynda

[Squirt's Mom]

Hi Fawni,

My thoughts and prayers are with you, Tuffy and your hubby as you cope with the difficult days ahead. I know how difficult it is to watch your baby getting worse and to know the time to face "the decision" is coming soon. We cling to every hope that tomorrow will be better.

Love on that girl as much as possible, give her anything that makes her happy, and know she loves you with all her being.

Hugs,
Leslie and the gang

[Tuffy]

I appreciate all of your kind thoughts and support, from all of you. Glynda thank you for the link.
As of today, we have found out that the compounding pharmacy that we were using did not compound the name brand Vetoryl for Tuffy. We have two compounding pharmacys here and one is run by a real crazy guy that compounded medication for my husband while he was in one of his moods and my husband became seriously ill. So we took Tuffy's Trilostane to the other compounding pharmacy as it has a better reputation and no one acts schizophrenic there. So as soon as we had the first round of increased Trilostane compounded from our large dosage capsules of Trilostane we assumed that the pharmacist was doing what we adamantly told him to do. My husband took in the high dosage capsules of Trilostane and said they needed to be compounded down to the 15 mg. size but it absolutely had to be Vetoryl not the powder that the pharmacist was trying to push on him. My husband explained that this was a very serious disease and that two different vets in two different cities had absolutely insisted that nothing but the name brand would work. So he said I don't care about saving money I only care about saving my dog and my dog has to have the name brand so please make sure that you use what I brought in and not anything else. So Tuffy has been getting worse and worse and today he is totally listless after being on the name brand Vetoryl in 10 mg. capsules to get to 40 mg. twice daily, for the past five days. So my husband checked back with the pharmacy and found out from a clerk that we had indeed, been given the unknown powder. At least according to their own computer. I am totally shocked that a professional pharmacy would behave so terribly and mess with the life of an animal just because they thought it wouldn't make a difference! And despite my husband insisting that it had to be the Vetoryl. We sure didn't receive any discount in price but we sure have paid in Tuffy's health. But now Tuffy is totally listless and we had his electrolytes checked but they are fine. Today is his 5th day on the name brand Vetoryl and I think that is to soon to do another ACTH Stem Cell test. So . . . .what do you guys think? You all have more experience than I do and a whole lot more knowledge so I am asking you for help and advice. At this point what do you think I should do? I thought he might be going into Addisons Disease but his electrolytes are fine yet he is pretty lifeless. He has had 1/2 cup of water today and a small breakfast. It is 1:36 p.m. as I write this and I will be checking back to see if anyone has had a chance to answer back. Also, does anyone have any advice about how to deal with that pharmacy? because I am so angry at them for what they did and I would like to prevent any other animals or people from being hurt like that. I thought I would start by putting them on Angie's list as not being good for pets medicines. But Tuffy comes first and I need to find out what to do about him first. Our usual vet was not in today and the one we saw didn't seem to know much. We also left a message for the vet at Davis so I'm just trying to get some answers before the day is over. Thank you for your help. I will be checking back when I get off work and my husband might be able to check before then.

Tuffy's mom

[Jenny & Judi in MN]

I'm no expert but I think they can still have low cortisol with normal electrolytes. Did your vet suggest giving some prednisone and withholding anymore Trilostane?

I guess normally that is what I would do but I hope one of the pros chimes in. I'm so sorry you guys are going through this. Hope your guy is perking up.

[Squirt's Mom]

Hi Fawni,

I would stop the Trilostane/Vetoryl if it were me. Did the vet do an ACTH or just check the eletrolytes? If an ACTH wasn't done and he isn't better fairly soon after the last dose of Trilo, call and schedule one asap.

I could be wrong, but I don't think you can compound the brand name Vetoryl. Only the manufacturer, Dechra, has rights to use that drug. Compounded Vetoryl is made with the generic form, Trilostane. Doses in the sizes that Dechra makes cannot be compounded by law - only Dechra can make those dose sizes. Any other size can be compounded, in fact have to be compounded, using Trilostane. So the odds are, the "unknown powder" is Trilostane.

Hugs,
Leslie and the gang

[addy]

Leslie, you are 100% right, Vetoryl cannot be used to be compounded by anyone. Only Dechra can use the name brand Vetoryl. Any compounding pharmacy cannot use Vetoryl.

I am confused as Zoe was on 40mgs Vetoryl and we used 1 30mg capsul and 1 10 mg capsul.

I agree with Leslie. I sure hope you can reach your vet.

[molly muffin]

Oh gosh, just now getting online and I do hope that you've been able to get hold of your vet and they can find out what's going on.

BIG Hugs,
Sharlene

[labblab]

I've only got a moment to type, but just to make things sound even more confusing -- yes, compounding pharmacies CAN use brandname Vetoryl as the basis for repackaging capsules into dosage strengths that are not manufactured by Dechra. In fact, according to the FDA, that is the only legal way in which compounded versions of the drug should be sold. Most all internet pharmacies, however, use nonbrand Vetoryl as the basis for their compounded product ("trilostane"). This is what the FDA expresses concern about. I'll come back later tonight and flesh out the details.

Marianne

[addy]

I am wrong then, Marianne. Our pet pharamcy told me they cannot use Vetoryl to compound when I asked them last year.
I needed 5mg capsuls back then.

Okay, good to know, Marianne will be back.:):):)

[Tuffy]

Thank you all for your support and answers. Now I am totally confused though because the packages we receive from the vet say Vetoryl but the vet calls them Trilostane. Yet the vet at Davis, and a world's leading authority on dogs, according to our local vet, who works at Davis as well as a experienced vet not a resident, all said not to have anything but Vetoryl given to Tuffy. Our local vet said that too. But they called it Trilostane so I thought it was the same thing.
Marianne, you were right that we were having large dosages repackaged into smaller doses because we could not get the dosages recommended by our vet. We thought that having 60 mg. repackaged into 15 mg. would be the best way to ensure we got the medication we started out with. I mean really it doesn't seem all that difficult for someone who works with medications. But what was put into the smaller capsules was not what we handed over originally. I will be checking back tonight to read what else you have on the subject matter. You seem to really know a lot about it.

Leslie & the Gang, the vet only did a electrolyte test but he did mention getting another ACTH test done. But is 5 days to soon to tell if things are working or going awry? Also, the vet that was in today is not the one we normally see and I think he is a bit questionable. At least he has given us bad advice in the past with our other two dogs so we generally try and avoid him but he was the only vet available today.

Jenny & Judi, the vet we saw today did not suggest prednisone or stopping the Vetoryl/Trilostane. However, he did say that the ACTH test had to be done after fasting and we have always been told by the vets/residents at Davis as well as the vet we usually see locally that that is not the case. You can't give your dog that medication on an empty stomach so having a test after fasting seems like it would cause a dog a lot more problems. Out of the six or seven vets who work at the animal hospital where we take Tuffy, the vet we saw today is the one we like the least.

Tuffy seems to be eating okay and he is drinking. We've measured out a cup and a 1/3 that he has drank today and he is interested in food. He seems to be wanting someone to be with him as much as possible and he seems slightly more alert than he did when I came home at lunch. But not his usual self. I'm wondering if he has a bad headache from the macro tumor.

Just out of curiosity what have you all been told about the ACTH test? Were you told to fast your dog first or to let them eat? I'm very worried about being told that we should be fasting Tuffy first because we were told not to fast him as the test should be done two-three hours after taking his medication and we were told that the medication should not be taken on an empty stomach. We were also told he did not have to fast before the ACTH test until today by the vet we try to avoid as much as possible. We have not as yet, heard from the vet at Davis and our regular vet won't be in until Wednesday.

Thank you all for your answers. I really appreciate your replys and so fast too.

Fawni
Tuffy's mom

[Jenny & Judi in MN]

Jenny is having an ACTH on Wednesday. Her vet specifically said she does not need to be fasting. We never have for any of the 9 or 10 ACTH tests we've done over the last year +.

I've only read a little about the macrotumors. I wonder if you need a different specialist. Yours certainly sound qualified but they are giving you not so terrific information.

hang in there. Judi

[frijole]

I never used vetoryl/trilostane but just from reading alot here I am fairly sure that you should feed your dog as normal. I think you also give the morning dose (if that is normal time for dosage) and that the test should be done 2 to 4 hours later.

LOOKING FOR CONFIRMATION FROM A SEASONED VETORYL USER! :D

Kim

[labblab]

OK, I'm back again with hopefully a more thorough explanation of the compounding question. There is currently pending litigation involving the FDA, compounding pharmacies, and other interested parties regarding the legalities associated with preparing custom-made veterinary medications. It is a complicated and involved topic. But in terms of Tuffy's situation, this is what I can offer as far as my own knowledge.

"Trilostane" is the chemical name for the active ingredient contained in brandname Vetoryl. Vetoryl is an FDA-approved drug in the U.S., but is available in limited dosages: 10 mg., 30 mg., 60 mg., and 120 mg. strengths. If a dog needs a dosage strength other than one of these, according to the FDA, it is legal for a compounding pharmacy to convert brandname Vetoryl capsules into the size that is needed by that individual dog. According to the FDA, this is the ONLY legal way in which a personalized dosage strength should be created: by converting brandname Vetoryl. Here is an excerpt from a warning letter sent by the FDA to vets and pharmacists back in 2009:


There may be instances where you may be asked to compound trilostane for specific patients that require the drug in strengths or forms that are not offered by VETORYL. In these limited cases, trilostane can only be legally compounded if it is done by or on the order of a licensed veterinarian within the practice of veterinary medicine, and if the FDA-approved VETORYL is used as the starting material. Additional requirements and information on legal animal drug compounding are available in Title 21, Code of Federal Regulations, Section 530.13 (http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfcfr/CFRSearch.cfm?CFRPart=530&showFR=1).

Many compounding pharmacies have questioned the FDA's authority over their professional practice, however, and there is ongoing litigation related to this question. Those pharmacies do not use brandname Vetoryl as the basis for their compounded "Trilostane" products, and instead purchase bulk chemicals from whomever they wish and then prepare their own products for sale. This is what permits them to sell their own compounded trilostane for much less than the cost of brandname Vetoryl. I do believe that some small, local compounding pharmacies are willing to "repackage" brandname Vetoryl if owners are willing to pay the price. However, for certain, that will be more expensive than buying trilostane that has been compounded from a bulk chemical. And it appears as though the majority of internet compounding pharmacies, including those used frequently by our members here, refuse to use Vetoryl as the basis for a repackaged product, regardless of whether or not an owner requests it and is willing to pay for it. I might add that these compounded products that use bulk trilostane instead of brandname Vetoryl are NOT generic equivalents (generics are manufactured by FDA-approved drug companies). Unless the compounding pharmacy is willing to tell you the source of their bulk chemicals, you have no way of knowing where the trilostane came from.

So in Tuffy's case, if your understanding was that the compounding pharmacy was going to use brandname Vetoryl as the basis for Tuffy's medication -- and you were willing to pay for it -- there is no excuse for them substituting a bulk form of trilostane for his capsules without your knowledge. If I were you, I'd report them to your state licensing board that oversees professional pharmacists.

Marianne

[molly muffin]

When in doubt, check out what Dr. Peterson says.

http://endocrinevet.blogspot.ca/2011/03/whats-best-protocol-for-acth.html


With trilostane, it’s extremely important to give the morning medication with food, and then start the ACTH stimulation test 3 to 4 hours later.

Fasting these dogs on the morning in which the ACTH stimulation test is scheduled should be avoided since it invalidates the test results.

When a dog ‘s food is withheld, the absorption of trilostane from the gastrointestinal tract is decreased. This leads to low circulating levels of trilostane, resulting in little to no inhibition of adrenocortical synthesis. Therefore, serum cortisol values will higher when the drug is given in a fasted state than when it is given with food.

The higher basal or ACTH-stimulated cortisol results could prompt one to unnecessarily increase the daily trilostane dose. That misjudgment may lead to drug overdosage, with the sequelae of hypoadrenocorticism and adrenal necrosis in some dogs.



I also would say that I would go with the advice of those who have been going through the ACTH testing for so much longer than myself.


Hugs,
Sharlene

[labblab]

Fawni, I see we've started a new page here, so please be sure and go back to see my new, updated reply about the compounding question. I think you have a reasonable basis for lodging an official complaint about the pharmacy.

In fairness, though, I am fearful that the changes you are seeing in Tuffy are unrelated to the medication itself and instead are caused by the effects of the pressure that the enlarging tumor is placing on Tuffy's brain. I will be anxious to hear how the specialists at Davis advise you to proceed.

Marianne

[mypuppy]

Princess has never fasted for her ACTH and her test is performed within 4 to 6 hours post pill. Hope that helps.

wishing you and Tuffy a smooth treatment.

tightt hugs. Xo Jeanette



I never used vetoryl/trilostane but just from reading alot here I am fairly sure that you should feed your dog as normal. I think you also give the morning dose (if that is normal time for dosage) and that the test should be done 2 to 4 hours later.

LOOKING FOR CONFIRMATION FROM A SEASONED VETORYL USER! :D

Kim

[lulusmom]

Hi Fawni,

I agree with Marianne that chances are Tuffy's continuing symptoms are associated with the macro tumor and not the compounded Trilostane. I too will be interested in what UC Davis has to say about Tuffy's condition and how they recommend that you proceed. I think I mentioned to you previously that if I had a dog with a confirmed macro tumor with obvious signs that it is enlarging, causing neuro problems, I really don't think I would be treating with anything. What symptoms does Tuffy have that are the biggest problem for you and are you sure those symptoms are not due to the macro tumor? If you aren't sure, I think this is where UC Davis can help.

With respect to compounded Trilostane, many of us have and still do use compounded meds for our dogs, including Trilostane. Aside from one incident which I believe involved a colored filler that was used by a compound pharmacy, I don't recall any dog experiencing adverse reactions or lack of efficacy which was directly attributable to compounded Trilostane.

I believe the reason a lot of these pharmacy don't want to compound from finished products like Vetoryl is because, believe it or not, it's a lot riskier than compounding from bulk drugs. According to what I've read, even the courts have agreed that it's more difficult, more dangerous and more expensive to compound from finished products because they have to reverse engineer the active and inactive ingredients in a finished product. I'm wondering why the pharmacist didn't explain this to your husband instead of going against his wishes, which I feel is inexcusable. If I were you, I would definitely file a complaint with the State Board of Pharmacy in your state.

I'll be here with everybody else waiting for your updates.

Glynda

[Tuffy]

Thank you. Thank you. Thank you for such wonderful information. I also rechecked our box of Vetoryl and right below the name Vetoryl is Trilostane. This is the box from Dechra. That explains why the vets called it Trilostane. Since we did bring in the 60 mg. capsules and ask the compounding agency to redo them in 15 mg. capsules that is what we expected. We were told about the cheaper way of doing it and insisted that we were willing to pay the higher price and adamantly insisted that it was the only medication we wanted in those 15 mg. capsules. So there was no reason to substitute the wrong medication. Besides we paid a very high price for the repackaging and and the original Trilostane yet we still got the cheap, no good medication. I did not know where to report them so I really appreciate that information. First, because I am so mad about what happened to Tuffy and second, because I certainly don't want any other pet owner to have to go through this. Pets are just as much family as children are.

I'm so glad that you all responded about the fasting ACTH test. Fortunately we have never fasted Tuffy because we were told originally not to. Obviously the vet who told us that Tuffy should be fasting had no real knowledge of Cushings or the tests involved when you treat it. So we will go with our original instructions which is to test two hours or two and a half hours after he eats and has his trilostane.

I have some great news this time too. Tuffy has perked up. He has eaten his dinner and then some. He drank some water on his own without any prompting and he has had his second dose of Trilostane without any more listlessness or abnormal behavior showing up. It's been an hour and his energy is up to where it normally is. I am very relieved to see this. He even stood in the kitchen and watched me make dinner in the hopes that he might get some human food! I am so glad he perked up.

Thank you all for your expeditious help and the wonderful information. Getting answers from Davis takes more than a day despite leaving messages by phone and email so it is really nice to be able to get some help from another source when you desperately need it. Thank you.

Fawni
Tuffy's mom

[labblab]

With respect to compounded Trilostane, many of us have and still do use compounded meds for our dogs, including Trilostane. Aside from one incident which I believe involved a colored filler that was used by a compound pharmacy, I don't recall any dog experiencing adverse reactions or lack of efficacy which was directly attributable to compounded Trilostane.

I believe that more vets have become cautious about prescribing compounded trilostane prepared from bulk chemicals subsequent to news of this recent study conducted by Dr. Audrey Cook of Texas A & M University. This study was funded by Dechra, but Dr. Cook is highly respected internationally both as a researcher and a clinician. This study does raise direct concern about the effectiveness of compounded trilostane compared to Vetoryl. These are the study results:


Compounded trilostane capsules (15 mg, 45 mg, or 100 mg) were purchased from eight pharmacies and assayed for content and dissolution characteristics. Capsules made in-house containing either inert material or 15 mg of the licensed product and proprietary capsules (30 mg and 60 mg) served as controls. Findings were compared with regulatory specifications for the licensed product. Altogether, 96 batches of compounded trilostane and 16 control batches underwent analysis. In total, 36 of 96 (38%) compounded batches were below the acceptance criteria for content. The average percentage label claim (% LC) for each batch ranged from 39% to 152.6% (mean, 97.0%). The range of average % LC for the controls was 96.1–99.6% (mean, 97.7%). The variance in content of the purchased compounded products was substantially greater than for the controls (234.65 versus 1.27; P<0.0001). All control batches exceeded the acceptance criteria for dissolution, but 19 of 96 batches (20%) of purchased compounded products did not. Mean percent dissolution for the purchased compounded products was lower than for controls (75.96% versus 85.12%; P=0.013). These findings indicate that trilostane content of compounded capsules may vary from the prescribed strength, and dissolution characteristics may not match those of the licensed product. The use of compounded trilostane products may therefore negatively impact the management of dogs with hyperadrenocorticism.

Here's the link for the abstract of this article published in the Journal of the American Animal Hospital Association:

http://www.jaaha.org/content/early/2012/05/18/JAAHA-MS-5763.abstract

Based on these study results, it seems entirely possible that some dogs on our forum may have had less than optimal treatment as a result of inconsistency/ineffectiveness in their batches of compounded trilostane (for instance, cortisol dropping too low, poor symptom control or multiple dosing changes). But since the content of their trilostane has not been analyzed, we will never have any way of knowing whether or not it contributed to their problems.


I believe the reason a lot of these pharmacy don't want to compound from finished products like Vetoryl is because, believe it or not, it's a lot riskier than compounding from bulk drugs. According to what I've read, even the courts have agreed that it's more difficult, more dangerous and more expensive to compound from finished products because they have to reverse engineer the active and inactive ingredients in a finished product.

I am unaware of any judicial decision stating that it is more dangerous to compound from finished products, so I would definitely be interested to see such a citation. I can indeed imagine that it may be much more time consuming, and in some cases impossible to compound from a finished product depending upon the type or the composition of the original drug. But when it is possible to use an approved, licensed drug as the basis for the compounded alteration, that is supposed to be a compounding pharmacist's job -- to manipulate licensed, approved drugs into a form in which they are not available directly from the manufacturer. And I've seen nothing to indicate that the licensed drug contained within Vetoryl capsules cannot be compounded safely into alternative doses.

In Dr. Cook's study above, the researchers successfully prepared in-house control capsules containing 15 mg. of the licensed product contained within Vetoryl capsules. Also, in his recently published research re: twice-daily low-dose trilostane treatment, Dr. Edward Feldman of UC Davis states that whenever compounded drug increments were needed during the study, the capsules were prepared using the licensed drug and not an unapproved bulk version of the chemical:


Initial trilostane dosage for each dog was 0.2 to 1.1 mg/kg (0.1 to 0.5 mg/lb) administered orally every 12 hours. Capsules provided by the manufacturer (30 and 60 mg) were used whenever possible. If needed, capsules with the calculated dose were prepared by a compounding pharmacy using trilostane purchased from the manufacturer.

In summary, I am not trying to bash compounding pharmacies. They perform a critical service and I have stated over and over again that if the high cost of brandname Vetoryl will prohibit an owner from being able to treat his/her Cushpup, then I would definitely opt for a less expensive product compounded from bulk chemicals. But based on Dr. Cook's research above, if an owner can afford to buy Vetoryl -- or requests that the licensed product contained in Vetoryl be used as the basis for a compounded dose -- then I would recommend that as the preferred route to go.

Marianne

[mypuppy]

Hi Fawni,

Sorry to chime in again, and not sure if it would be significant, BUT I always take Princess for her stim tests within ( 4 to 6 hours) after taking her Vetoryl. i give her pill at 7 am, at IMS by 1030 am, they do her first draw at 1100 am and then an hour later at 12pm. And done. I believe you can find that in the Dechra product insert as well, but perhaps Marianne can comment if performing the stim within 2 hours post pill could make the test less acccurate or not???

Xo Jeanette

[molly muffin]

I will chime in that I think it would be a great benefit if a complaint against the pharmacy that compounded bulk rather than the medicine supplied and then charged you for the higher priced product. was filed.

If a person can't afford the more expensive name product then by all means, it's an alternative and that is going to include a lot of people, but we have to force pharmacies to practice ethical compounding.

This is important in both human and animal medicine.

If you have any of the pharmacy compounded medicine and it is possible or you can afford to have it analyzed by another lab, you can find out what dosage was actually being taken. You need a minimum of 4 pills, possibly more for analyzing.

Okay so I know that I'm maybe a bit over the top on this, but my Brother in Law, almost died, was in the hospital for over a month, crashed and had to be carted a couple times and when we found out why, it was a compounding pharmacy that in at least 2 pills, barely had any medicine and in another couple pills had 5 times the amount. He overdosed on his first day of taking the medicine. :( He will and does have life long lasting problems from this and has successfully sued the pharmacy in question.

If at all possible I won't use a compounding pharmacy ever again. It may at some point not be an option and I'll have to use one, but I will probably be a wreck the entire time.

So not to scare anyone and I'm sure there are good, ethical pharmacies out there. I am not inclined to think the one who did Tuffy's meds is one of them, but we have to hold them accountable for their actions.

My two cents.

I am so happy to hear that Tuffy was more himself today. Yay!
Hugs,
Sharlene

[molly muffin]

Hi Fawni, haven't heard from you in awhile and was wondering how you and Tuffy are doing.

hugs,
Sharlene

[Tuffy]

Hi everyone,
I thought I'd give you an update on Tuffy. He had his best ACTH stim test result yesterday. Even though we had a fairly long wait in the exam room, which I think caused him to be a little stressed prior to the test, his results were 5.6 ug/dl pre-stim and 7.0 ug/dl post-stim. We have been gradually raising the triolstane dose over the past three months, and we currently have him on 30 mgs of Vetoryl twice a day, which I believe is a rather large dose for a 17.5 pound dog. But he seems to be tolerating it pretty well, and his excessive hunger and thirst seems to be well under control. However the one thing that has not improved is his muscle weakness. He continues to have a difficult time walking. Does anyone know if muscle weakness from Cushings can improve over time if the cortisol levels are kept under control?
Thanks
Tuffy's Dad

[Tuffy]

Hi everyone,
I forgot to mention that we also had a Chem panel done on Tuffy, and it looked pretty good except for his alkaline phosphatase being elevated, which is understand is typical with cushings dogs. The biggest problem continues to be his leg weakness which makes walking difficult for him. We set up a ramp at our back door steps and at the couch. But we mostly carrying up and down stairs and lift him on and off the couch. Has anyone seen this kind of weakness improve in a dog when their cushings is kept under control.
Tuffy's Dad

[Harley PoMMom]

Muscle weakness will improve when the elevated cortisol is controlled, but it can take a long time.

Some members have tried Hydro therapy to help with the muscle weakness.

[Tuffy]

Do you think the ACTH stim test results of 5.6 ug/dl pre-stim and 7.0 ug/dl post-stim is indicating reasonable control? See posting on 10-14-12.
Thanks
Tuffy's Dad

[Squirt's Mom]

Hi Tuffy's Dad,

Those results are not optimal but acceptable AS LONG AS ALL SIGNS ARE CONTROLLED. Control is the key. The optimal post number should be between 1.45 - 5.4 ug/dl for a Trilo pup but they can go up to a post of 9.1 ug/dl if the signs are well controlled.

Here is a link to info on Trilo -

http://www.dechra-us.com/files//dechraUSA/downloads/Client%20Literature/47902_VETORYL_10mg_Treatment_and_Monitoring_Brochu re_Update_3_2_ps.pdf

Hugs,
Leslie and the gang

[molly muffin]

It does sound like tuffy is having better results these days. That is good to hear.

hugs,
Sharlene and Molly muffin

[Tuffy]

While Tuffy is doing better with the increase of Trilostane to 30 mg. twice a day, he still shows excessive Cushings behavior every evening. He works himself into a panting dither over food in the evening and drinks excessively in the evening whilst not so much during the day. We're afraid to increase his Trilostane further because it is so toxic and he weighs 17 lb. which doesn't seem like much for such a high dose of Trilostane.

However, there is one thing I was wondering about and that is his myoplankta which I probably spelled wrong. He walks like a stiff legged soldier from that and our vet seems to think that is his worst problem at this point. It seems like that is causing his legs to be very weak and he falls a lot. Does this ever get better? I know his walk won't ever improve but will his weakness which has spread and is on both sides now?

Tuffy's Dad

[molly muffin]

OMG, how on earth did your thread get lost. How is Tuffy?

I hope you had a good thanksgiving, a good christmas and happy new years. Did I cover it all?

I can see that no one ever replied to your question about the legs getting better. I don't know myself if they will get stronger or not. Have they been looked at or do you think that was just the muscle wastage?

I hope that all is well with you, tuffy and the family.

hugs,
Sharlene and Molly Muffin

[Tuffy]

Hello Everyone,
Sorry we haven't posted for while. I wanted let you know that Tuffy is still with us. Things have been up and down for him over the past several months. Besides the macro tumor/cushings/myotonia situation and issues with his back, he had to have some bad teeth removed, and he has been dealing with a swollen salivary gland. Yet he now seems to be in much less pain then before and he even manages to sometimes have relatively good days.

But things may be taking a turn for the worse. He no longer seems to be able to tolerate trilostane. He had been on a high dose for quite a while, 60 mg/day which is a lot for a 15 lb dog. Then a few weeks ago I accidentally gave him an overdose that resulted in him getting 90 mg in one day. He got very sick! Bloody diarrhea and severe lethargy. But surprisingly he did not go into Addison’s. And his electrolytes and blood panel numbers remained good. Unfortunately when we now try putting him back on even a low dose of trilostane the diarrhea and lethargy comes right back. We even tried keeping him off trilostane for 2 weeks (at the end of which his ACTH stim test went to 5.9 pre and 22.9 post) and then restarting the trilostane. But within a couple of days the diarrhea and lethargy returned. We fear we can now longer give him trilostane to control his cortisol levels.

Your thoughts on this would be appreciated. Thank you everyone for all the support you've given.

Tuffy's Dad

[Simba's Mom]

That seems like a really high dose for a 15 pound dog, I would get that rechecked but keep ur furbaby off for now.....seems like he should be on 10 or 20mg.....sending hugs

[Harley PoMMom]

How are Tuffy's other symptoms? Has his drinking/urinating increased? What about his appetite? I believe if his symptoms are somewhat normal than holding off on the Trilostane is probably a good idea for now.

How low of a dose did you try to put Tuffy back on?

Keeping you both in my thoughts and prayers, Lori

[goldengirl88]

Tuffys Mom:
When my Tipper first started Vetoryl she exhibited those symptoms, acting skiddish, distant, and scared of things, she still does some of them to this day. I am convinced it is a side effect of the drug. One of the vets in the practice I go to told me it would change her personality so he must be right. Good luck to you and your Tuffy. Blessings
Patti

[molly muffin]

Hello again and welcome back. I am so sorry that Tuffy is having these problems now after everything else that you have all been through.
It sounds like you may need to give the trilostane a break for a bit. Has Tuffy been looked at for an ulcer? Or it could be that Tuffy is going to need some time to heal up in the gastro tract before going back to trilostane at at much lower dosage.

hugs,
Sharlene and Molly Muffin

[Tuffy]

Hi Everyone:

I have an update on Tuffy. He is such an amazing little dog. He is a rescue so we didn't name him but we're finding out that Tuffy really fits. He was able to tolerate more Trilostane today. I don't think he will ever be able to handle 60 mg. again and that was a high dose but even at that level his tests showed that the Cushings still wasn't under control. His leg weakness is still there but he is walking a little better. Not much walking just to his water bowl and to the kitchen if he is interested in what we're doing. He still has excessive thirst and urination but he seems more like himself. He is such an amazing dog. I work with animals and Italian Greyhounds like Tuffy would never be able to be trained for service dogs because usually they don't have the right temperment for it. But ever since we got Tuffy he has been able to recognize when I have a low blood sugar. (I'm a type 1 diabetic). Before Cushings he would go and get my husband to help me but we figured with his Cushings and inability to walk much that that was over. He surprised us again. If I have a low blood sugar now he won't let me pick him up and if it is at night he will bark to sound the alarm. He is so amazing. I wish we could have given him a better life than a life with Cushings. I am hoping with more of his personality returning that his Cushings won't get any worse despite it not being under control.

Thank you all for your helpful comments and support. We really appreciate it.

Tuffy's mom

[molly muffin]

So glad to hear that Tuffy is doing so much better. Isn't that amazing how he had turned into a wonderful service dog with the diabetes. Very awesome!

hugs,
Sharlene and Molly Muffin

[Tuffy]

Hi everyone,

Wanted to give you a quick update on Tuffy. We have successfully given him 30 mg of trilostane over the past three days with no apparent ill effects. We are thinking we’ll keep him at that dose for the time being and see how he does. Our vet saw him yesterday and was amazed at how much more personality he is displaying now after having been off trilostane for a couple of weeks compared to when he was on the 60 mg dose. I think the drug really starts to make him not feel good, though we realize it is necessary to keep the cortisol levels down.
Thank you for all your support.
Tuffy’s Dad

[Simba's Mom]

What a blessing Tuffy is to you, and you are both such great parents, sendings hugs!