Wayne has crossed The Bridge / Wayne-Newly diagnosed 10-year-old pit mix

[pibblesandbits]

By way of introduction, Hi, I'm pibblesandbits, mom to 3 canine kids and 1 human kid. My sweetest dog Wayne (~10yo, almost 11) has finally gotten a diagnosis of Cushing's Disease, pituitary-dependent. After a bunch of mismanagement by the old vet who didn't read his basic lab results until I had hounded them by phone for 2 months, at which point she said, "Wow, that is really abnormal, we should rerun the labs since it's been so long", we switched providers. She kept saying all his symptoms were because of arthritis. Sigh. So, we are in the care of a new vet now, and he has received his diagnosis. He started his treatment with Trilostane 120mg on Friday, but on Saturday night he had frank blood in his urine and developed tremors. We are so terrified, and the vet doesn't open until Monday, but their emergency line did say to discontinue the medication until we can speak with his primary vet.

I love these dogs so much. They got me through a very tough time when I was taking care of my own sick mom, and I feel I owe him more than he's getting. He is suffering and has been for months because we were unable to get answers for such a long time. He has been symptomatic since the late summer at least. He has lost so much muscle mass that his chest kind of hangs in front of him, and his hind quarters are just saggy. He struggles to get up and down the few stairs to our apartment. His hunger has been off the charts, to the point where he tore the door off the dog food bin while we were out. His thirst is also overwhelming, and we tracked that he would drink 8+ liters/day if left to his own devices. He's even eating snow because of how desperately thirsty he feels. As a result of the Cushing's and the water intake, he has been having so many accidents inside, and I know he feels bad about them, so we are doing all we can to bring him out every hour when we're home. He's also had a couple accidents while lying on the ground and he didn't even get up as he peed all over himself! It made me worry that maybe his mind is going too?

I had such high hopes that with a diagnosis and treatment, he would start to feel better, but the peeing blood and shaking are terrifying and really make me feel like he's dying. And as much as I am freaking out about losing him (I cried so much last night watching him shake), I am also really worried about his sister, who has never been apart from him. I swear she's going to have a nervous breakdown without him. I don't even know what the point of this post is -- I guess I just want to thank everyone for all the information I've gained from reading here -- and also I would love to hear if anyone else tried alternative medications to trilostane, like anipryl, which I read about as another option.

Thanks for reading. I know you all understand what I'm going through. This gentle giant of a dog is the absolute sweetest dog I have ever met, and this is breaking my heart. If the treatment doesn't work, is this the end? I wish I knew the future because this is so heartbreaking for us.

[pibblesandbits]

I am a new member who has been reading along for a few months now but just registered. I made a stand-alone post about my dear dog Wayne, who is newly diagnosed. The treatment has been a disaster so far, and we are so lost and terrified about what to do next. I'm also freaking out a bit because I have been the one giving him his trilostane, and I am pregnant, and the vet never told me that you're not supposed to even touch the stuff if you're pregnant. It has been a terrible couple days. If anyone cares to read my post, I would welcome your feedback on alternative medications like anipryl. I want Wayne to feel better but it seems like all the medications are pretty terrifying in their own right. Wayne has been urinating a fair amount of blood and has developed tremors on the new medicine, and I just want to know if there's any hope of this improving or if we need to consider different medications. Thanks for reading.

[labblab]

Welcome to you and Wayne — I am SOOOO glad you’ve found us! We surely understand your worry, and we’ll do our very best to support you both. Upon saying that, I regret that I don’t have much time to post a comprehensive note right now, but I’ll do my best to return by tomorrow and write more. In the meantime, here’s a couple of quick thoughts. It seems very possible to me that Wayne may have developed an acute urinary tract infection. Cushpups are very vulnerable to UTIs, and that could definitely account for the blood in his urine. So your vet may want to check his urine tomorrow and even just go ahead and start him on a broad-spectrum antibiotic based on the assumption of a UTI, while awaiting a culture.

In the meantime, I agree that it’s wise to discontinue the trilostane until you have the chance to consult with your vet tomorrow. Can you tell us how much Wayne weighs? Unless Wayne is a really big boy, 120 mg. may actually be a higher dose than he can comfortably tolerate. Initial dosing recommendations have really shifted downwards during the last ten years, and the most widely accepted recommendation now is to begin at a dose that does not exceed 1mg. per pound. So if Wayne weighs less than 120 pounds, he might benefit from a lower dose to begin with. Here’s a link that helps explain the reasoning for this.

http://www.k9cushings.com/forum/showthread.php?185-Trilostane-Vetoryl-Information-and-Resources&p=1251#post1251

I noticed in another reply that you are concerned that you have been handling the capsules even though you are pregnant. It’s very true that your vet should have cautioned you about this, but I cannot imagine that you have really exposed yourself to a genuine risk after only a couple of days. From now on, though, it would undoubtedly be best if you wore some plastic/rubber/latex gloves while handling the capsules. And for sure, do not open the capsules and expose yourself to the powder either by handling or inhaling it. To be on the truly safe side, you may want to contact Dechra, the maker of Vetoryl, directly in order to see whether they have any other precautions that they would suggest to you in terms of future handling.

OK, I’m afraid I’ve got to run for now. But please don’t give up hope for your sweet boy! Uncontrolled Cushing’s can definitely cause severe and distressing symptoms, but lowering the cortisol can result in enormous improvement. So let’s first see what the vet has to say tomorrow, and then we can go from there.

Once again, welcome to you both!
Marianne

[Squirt's Mom]

Hi and welcome to you and Wayne! :)

I am on my way out the door right now but did want to ask you how much Wayne weighs. The starting dose for Vetoryl (Trilostane) is 1mg per lb so a 120mg dose would be right for a dog weighing 120 lbs....but that would a rather large Pit, even mixed unless with a Mastiff, Dane, etc. :) So if you could tell us his weight that would be wonderful! Meanwhile do NOT restart the Trilo until we can talk a bit.

Also if you would get copies of all the testing done to diagnose Wayne and post those results here in his thread that would help us give you more meaning feedback. On the wellness screen that shows things like BUN, CHOL, T4, etc we only need to see those values that are too high or too low along with the normal ranges for each and the little letters like mnol/l, ug/dl, etc for each value you post.

One more question - is there any chance he has an UTI? Does his urine have a strong smell (yes, we squat and sniff! :D ) and/or is the color darker than normal (you can use a white tissue/paper towel to see if he goes outside - just blot a bit up without getting mud if possible)? Those two are hallmark signs of an UTI.

I am sure others will be along soon to chat with you. For now keep and eye on him and make sure he has constant access to water - cush babies don't pee a lot because they drink a lot. They are going to pee regardless and can quickly dehydrate if water is not always available.

I'm glad you found us and look forward to seeing those test results soon...and any other detail you can give us. We LOVE details! :D

Hugs,
Leslie

[Harley PoMMom]

You will see that I have moved your reply from our "Checking in" thread to your original thread about Wayne. This way, all his treatment information will be in one place, and that will help folks give you better feedback.

Since Wayne is passing blood in his urine it is very likely that he has an UTI which the vet can check via an urine sample.

With respect to Anipryl, unfortunately it's efficacy is not great. It really is only effective in dogs having a pituitary tumor in the pars intermedia lobe. Only a very small percentage of dogs have a tumor in the pars intermedia and efficacy in those dogs is questionable, depending on the progression of the disease. Even the developer of the drug, Dr. David Bruyette, who was also a short time member here, limits its use to dogs with very mild symptoms or pet owners who can't afford the cost of the ACTH stimulation tests that must be done to monitor Lysodren and Vetoryl treatment.

We do have another thread on the forum where different medications are discussed, here's a link to that thread: Cabergoline, Retinoic Acid, and other novel pituitary Cushing's treatments (http://www.k9cushings.com/forum/showthread.php?8551) One particular link in that thread is to an article published by noted endocrinologist, Dr. David Bruyette: Part 3: Current & Investigative Options for Therapy (https://media.wix.co/ugd/38e433_2a59a2806e7c493d81988c1d9fd721cd.pdf)

However, those medications have not been widely researched compared to the conventional drugs of Trilostane (Vetroyl) and Mitotane (Lysodren). Vetoryl/Trilostane and Lysodren/Mitotane are strong drugs and both have some pretty scary side effects, however, adverse effects are minimized when the proper treatment protocols are followed.

Improvement in symptoms such as the excessive drinking/urinating and appetite are generally seen within two weeks of treatment. Regaining muscle mass takes much longer, it's usually months before improvement is noticed.

How is Wayne doing today?

[Squirt's Mom]

I have taken the liberty of adding Wayne's name to his thread so it will be easier to pick out when you want to chat with us. ;)

[pibblesandbits]

Thank you so much, labblab/Marianne! I apologize for the delay in responding -- I am new to this site so I was waiting to be verified and had trouble navigating back to my post. To answer your question, Wayne weighs about 68 lbs. Thank you for that link -- I will discuss it with the vet!

You were right on the money with your comment. Wayne did indeed have a UTI, which we finished treatment for yesterday. Thankfully the blood in the urine has stopped, as have some of the signs of urge incontinence. I feel terrible that he was suffering with that for who knows how long and that it got to the point it did before he was treated.

We also did discontinue the trilostane for a couple days until we could speak with the doctor who gave us the exact same advice you did. You really know your stuff! However he's back on it now, which means he has gotten a total of 12 doses. We are really hoping we start to see some alleviation of symptoms soon.

As of now, it seems like the thirst has improved but the hunger has not. Did you experience that with your own dog? Did their hunger ever return to normal? One thing that concerns us is that his food aggression, which he never exhibited before the onset of Cushing's, has not improved either and may even be getting worse. Yesterday he bit several holes in our daughter's high chair (she was not in it at the time) trying to pull it over to get at a couple morsels of cereal that were left on her tray. Obviously that is not a tenable pattern. We have a follow-up appointment and ACTH test with the vet tomorrow morning and will certainly ask them too, but I am interested in any anecdotes you and others may be able to share as well.

Finally, thank you for the tip about contacting the drug maker -- I will try to do that today!


Welcome to you and Wayne — I am SOOOO glad you’ve found us! We surely understand your worry, and we’ll do our very best to support you both. Upon saying that, I regret that I don’t have much time to post a comprehensive note right now, but I’ll do my best to return by tomorrow and write more. In the meantime, here’s a couple of quick thoughts. It seems very possible to me that Wayne may have developed an acute urinary tract infection. Cushpups are very vulnerable to UTIs, and that could definitely account for the blood in his urine. So your vet may want to check his urine tomorrow and even just go ahead and start him on a broad-spectrum antibiotic based on the assumption of a UTI, while awaiting a culture.

In the meantime, I agree that it’s wise to discontinue the trilostane until you have the chance to consult with your vet tomorrow. Can you tell us how much Wayne weighs? Unless Wayne is a really big boy, 120 mg. may actually be a higher dose than he can comfortably tolerate. Initial dosing recommendations have really shifted downwards during the last ten years, and the most widely accepted recommendation now is to begin at a dose that does not exceed 1mg. per pound. So if Wayne weighs less than 120 pounds, he might benefit from a lower dose to begin with. Here’s a link that helps explain the reasoning for this.

http://www.k9cushings.com/forum/showthread.php?185-Trilostane-Vetoryl-Information-and-Resources&p=1251#post1251

I noticed in another reply that you are concerned that you have been handling the capsules even though you are pregnant. It’s very true that your vet should have cautioned you about this, but I cannot imagine that you have really exposed yourself to a genuine risk after only a couple of days. From now on, though, it would undoubtedly be best if you wore some plastic/rubber/latex gloves while handling the capsules. And for sure, do not open the capsules and expose yourself to the powder either by handling or inhaling it. To be on the truly safe side, you may want to contact Dechra, the maker of Vetoryl, directly in order to see whether they have any other precautions that they would suggest to you in terms of future handling.

OK, I’m afraid I’ve got to run for now. But please don’t give up hope for your sweet boy! Uncontrolled Cushing’s can definitely cause severe and distressing symptoms, but lowering the cortisol can result in enormous improvement. So let’s first see what the vet has to say tomorrow, and then we can go from there.

Once again, welcome to you both!
Marianne

[pibblesandbits]

Dear Harley PoMMom, thanks so much for your reply! You were right about the UTI, which we have now treated.

Your input about the anipryl is extremely helpful and I really appreciate it. I now feel a lot better about not having tried that first. I was just in a panic at seeing him so sick after just 2 doses of trilostane, but I realize now that it was probably the acute UTI that was causing the tremors and blood in urine, so we are sticking with the vet-recommended trilostane for now. I just hope it starts to work soon. He has been on it almost 2 whole weeks, and at a fairly high dose (120 mg for a ~68 lb dog), and to be honest, we are not seeing a ton of improvement. It would be surprising if the doctor were willing to lower his dose in light of this lack of improvement. As I posted above in response to another member, Wayne is at least recovered from the UTI, but we still have concerns about his excessive hunger. It is a little frightening to see how desperate he is for food. He never showed even a hint of food aggression in his life until the last few months, and as a household with 3 dogs, 2 adults, 1 child, and another child on the way, I am desperate to get him past this food aggression in particular. He is such a sweetheart, by far the sweetest of our dogs, and it is scary to think that something is going wrong with his brain and changing his personality. I will certainly try to keep you guys posted. Thanks so much for asking!

Finally, I am reading through all the links you shared -- very helpful too! Thanks again for writing back.


You will see that I have moved your reply from our "Checking in" thread to your original thread about Wayne. This way, all his treatment information will be in one place, and that will help folks give you better feedback.

Since Wayne is passing blood in his urine it is very likely that he has an UTI which the vet can check via an urine sample.

With respect to Anipryl, unfortunately it's efficacy is not great. It really is only effective in dogs having a pituitary tumor in the pars intermedia lobe. Only a very small percentage of dogs have a tumor in the pars intermedia and efficacy in those dogs is questionable, depending on the progression of the disease. Even the developer of the drug, Dr. David Bruyette, who was also a short time member here, limits its use to dogs with very mild symptoms or pet owners who can't afford the cost of the ACTH stimulation tests that must be done to monitor Lysodren and Vetoryl treatment.

We do have another thread on the forum where different medications are discussed, here's a link to that thread: Cabergoline, Retinoic Acid, and other novel pituitary Cushing's treatments (http://www.k9cushings.com/forum/showthread.php?8551) One particular link in that thread is to an article published by noted endocrinologist, Dr. David Bruyette: Part 3: Current & Investigative Options for Therapy (https://media.wix.co/ugd/38e433_2a59a2806e7c493d81988c1d9fd721cd.pdf)

However, those medications have not been widely researched compared to the conventional drugs of Trilostane (Vetroyl) and Mitotane (Lysodren). Vetoryl/Trilostane and Lysodren/Mitotane are strong drugs and both have some pretty scary side effects, however, adverse effects are minimized when the proper treatment protocols are followed.

Improvement in symptoms such as the excessive drinking/urinating and appetite are generally seen within two weeks of treatment. Regaining muscle mass takes much longer, it's usually months before improvement is noticed.

How is Wayne doing today?

[pibblesandbits]

Dear Squirt's Mom/Leslie, thank you so much for your reply! Wayne weighs about 68 lbs. You are right that his dose does seem awfully high -- I am going to bring this up with the vet when we see her tomorrow morning, but I have a feeling that she will not want to lower the dose quite yet considering the lack of improvement in symptoms.

I also appreciate the reminder to get his lab results for my own files. I tend to do that for my own care but I've been such a mess about my poor dog that I simply forgot to ask for copies last time. I will do that tomorrow at the followup appointment! I am also very happy to share the details with a detail-oriented bunch. I will post them here if that's okay. I do know that his last vet, who wasn't really considering Cushing's, did run quite a few tests but then never told us the results (and it took months for her to release them to the new vet). I believe the new vet does finally have those results for thyroid and kidney function, so I will ask to see those too.

By the way, your advice about access to water was something I had read elsewhere on this site, and I so appreciate you sharing it again because it cannot be said enough. If I were just wading in and had to pick one piece of advice for newbies, that would be it. In fact, that was something I felt I observed early on in Wayne - that his urination seemed in a way to be uncoupled from his water intake. He peed copious amounts regardless of how much water he had. On days when I was limiting his water (which I never do anymore), he still peed rivers, and that made me so suspicious for Cushing's. If only I'd been wrong :( Anyway, thanks for welcoming me, and I look forward to sharing more with you guys as we learn more.



Hi and welcome to you and Wayne! :)

I am on my way out the door right now but did want to ask you how much Wayne weighs. The starting dose for Vetoryl (Trilostane) is 1mg per lb so a 120mg dose would be right for a dog weighing 120 lbs....but that would a rather large Pit, even mixed unless with a Mastiff, Dane, etc. :) So if you could tell us his weight that would be wonderful! Meanwhile do NOT restart the Trilo until we can talk a bit.

Also if you would get copies of all the testing done to diagnose Wayne and post those results here in his thread that would help us give you more meaning feedback. On the wellness screen that shows things like BUN, CHOL, T4, etc we only need to see those values that are too high or too low along with the normal ranges for each and the little letters like mnol/l, ug/dl, etc for each value you post.

One more question - is there any chance he has an UTI? Does his urine have a strong smell (yes, we squat and sniff! :D ) and/or is the color darker than normal (you can use a white tissue/paper towel to see if he goes outside - just blot a bit up without getting mud if possible)? Those two are hallmark signs of an UTI.

I am sure others will be along soon to chat with you. For now keep and eye on him and make sure he has constant access to water - cush babies don't pee a lot because they drink a lot. They are going to pee regardless and can quickly dehydrate if water is not always available.

I'm glad you found us and look forward to seeing those test results soon...and any other detail you can give us. We LOVE details! :D

Hugs,
Leslie

[Harley PoMMom]

That appetite in a cushdog does seem insatiable and should lessen. In the meantime, between meals some of our members have given their dog some carrots or frozen green beans to help with that hunger.

Good luck with the ACTH stimulation test, and 2 reminders regarding that test: the Trilostane has to be given with a meal even on the day of the test; and the ACTH stim test has to be performed 4-6 hours after the Trilostane was given. :)

Lori

PS ~ I posted a link to your thread on your visitor message board located in your profile page.

[pibblesandbits]

Thank you, Lori! We had read about the 4 hour wait between dosing and testing, so we have arranged to have the test start a bit later than it was originally scheduled. I am hoping that it won't cause problems that it will be more than 14 days since he started. It wasn't clear what to do because we started for 2 days, then stopped for 2 days, then restarted, so we will be within the 10-14 day range from the second start but not the first. The vet seems okay with it, and while she's new to us, I am working hard to trust her because she's been great so far.

Thanks also for the feedback about his appetite. I have been splitting his food into multiple smaller meals to see if it would keep him slightly happier, but nothing really seems to help. He just paces around looking for food all day and only seems satiated for a very short while after eating -- it's just really sad to see. I will try upping his intake of veggies between meals - we've always got frozen veggies in the house. Thanks for the tip!

I am so thankful for this community!

[molly muffin]

Hello and welcome from me too. As his cortisol comes down into a more normal range, the appetite often returns to normal then too. It does take time, as you are looking for a slow downward trend, not a fast bump down. So I do think you'll see improvements with that and in the mean time, those frozen veggies are great and things he can knaw on for long periods of time help.

[pibblesandbits]

Thanks Molly Muffin! The veggies seem to be helping. You're right, we don't want his appetite to drop off a cliff -- a gradual decrease would be better.

Hoping for good news from his first ACTH stim test since starting the medication. He seems so much more like his old self than we've seen in a while, but we've still got a way to go. Fingers crossed.


Hello and welcome from me too. As his cortisol comes down into a more normal range, the appetite often returns to normal then too. It does take time, as you are looking for a slow downward trend, not a fast bump down. So I do think you'll see improvements with that and in the mean time, those frozen veggies are great and things he can knaw on for long periods of time help.

[molly muffin]

We'll be anxious to see what the ACTH shows too. Does sound like you are on the right track with the appetite.

Doing good!

[pibblesandbits]

Because of the crazy weather we've had here, the pipes burst in the veterinarian's office and flooded her out the night before we were scheduled to do the ACTH follow-up test (I feel terrible for them, they lost so much, and it looked like a swimming pool in there!), so we had to reschedule for today, a full 5 days later. I'm wondering if this is going to cause problems, since we're well outside the 10-14 day range since starting treatment. I am hoping that the results will still be valid. I will definitely be sharing them here, as well as the original diagnostic lab results, which were from low dose dexamethasone testing, not ACTH. I will not be able to compare the two but it will still be interesting to see.

[Squirt's Mom]

As long as Wayne is doing well with no signs of the cortisol being too low the delay shouldn't cause any real problems. I can't imagine how awful that must be for his vet! So much could be damaged and lost in a heartbeat with water like that!

[molly muffin]

As leslie said as long as there is no signs of low cortisol, then you should be okay with the later testing. The results will be valid as long as they are done by proper protocol around 4 hours after medication given with meal.

I am very sorry to hear of the flooding at your vets and the loss they have experienced. :(

[pibblesandbits]

Okay, so I didn't go pick up the results yet, but you guys were right - the vet did call and said that we should drop his dose down a bit because his response has been phenomenal but she's worried he'll be in Addison's territory within a few months if we stay on this dose. So, we'll be doing 90mg/day rather than 120mg/day, and it'll be split between AM (60) and PM (30). As I noted earlier, he's almost 70 lbs. Does this seem like a more appropriate dose to you guys?

I am a little concerned that his symptoms will return, so I'll be keeping an eye out -- did anyone else notice anything that I should be on the lookout for as we drop his dose? If symptoms returned, was it gradual? When did you make the call to alert the vet that it wasn't an adequate dose?

Thank you so much for your input!

[molly muffin]

Everything depends on what the test results are for where his cortisol is at now and how fast it has dropped. Obviously it dropped enough that the vet doesn't think it is good to stay at 120mg. It will depend on where the next test shows the cortisol to be as to whether or not you stay at 90mg. Some large dogs, don't end up requiring large doses. I am not as much concerned about 90 not being enough as I am about making sure that even that dose is not too much.
Obviously his cortisol dropped quite a bit for her to lower the dosage before 30 days.

Can you call the vet and ask what the numbers on the ACTH are? It is really hard to give any kind of adequate feedback without knowing how he is reacting to the medication.

yes symptoms either good or bad, usually all show up gradually.

[pibblesandbits]

That is great advice and I really appreciate it - let me get those results. Poor vet is already under so much stress with the office disaster and yet she continues to give good care -- I think I feel guilty asking for extra, but we really do need those records. I hope they'll be able to tell me tomorrow.

[pibblesandbits]

I also meant to add that because she knows we are not high income people, she said that we could push off the next round of ACTH testing for 3 months rather than repeating it in 2 weeks. I consented to this but I hope this isn't a terrible idea... I know it's not standard practice, especially after a dose change. She did say to keep a very close eye on him and let her know of any changes in symptoms, in which case we would do the testing right away. I do trust this doctor but I feel a little nervous. I am just hoping we find the right dose soon - he has been doing so much better since starting the pills, so I was a little shocked that his results showed that maybe his cortisol was too low now. But again, I guess we really need the actual numbers, so I'm going to work on getting those tomorrow. You guys are a lifesaver - literally!

[labblab]

Hi again from me, and I’m so glad to hear that Wayne is doing better! As far as the testing, I’d normally be more worried about postponing testing if a dose was being increased as opposed to decreased. However, my reaction as it relates to Wayne will depend a lot on these actual ACTH results. So let’s wait and see what they were. A three-month testing interval is acceptable once a dog’s cortisol level has stabilized within the therapeutic range. But since you are still tinkering with dosing, there may be a compromise such as one more ACTH at six weeks. Or at least a basic blood chemistry to make sure that his electrolytes (mainly potassium and sodium levels) remain normal, along with a resting cortisol. A resting cortisol cannot really give you enough info to know if he needed a dosing increase, but it can provide some reassurance that cortisol is not dropping too low. So there are some options you can consider and discuss further with your vet as time goes on. In the meantime, though, let’s await those test numbers.

Marianne

[molly muffin]

Hi from me as well. Marianne has given you some options that you can discuss with your vet, especially t possible test at 6 weeks or a pre cortisol test to make sure he hasn't continued to drop too low.

I think the most important thing is watch for symptoms of going too low. If he were to stop eating, developing diarrhea, become wobbly can't stand, etc. These things can be immediate indicators of a problem and you can get him into a vet.

[pibblesandbits]

Thank you both for your replies.

Now I need a different kind of advice. I am having serious problems with the online pharmacy, KV Supply, where I ordered his medication from. They have delayed and delayed, and I'm furious. This morning we gave him the last pill we had, and the pharmacy hasn't even shipped his order yet. I placed the original refill order on Dec 15th - it was revised to the lower dose as soon as the vet had more information, and we still don't have it. Have any of you had issues with this pharmacy? I can't see myself ordering from them again. I have made no less than 12 calls to them over the past week, and things are just dragging on their end. Any recommendations for other online vet pharmacies with competitive prices?

Secondly, like I said, we are out of medication as of today. The vet said that if we missed one day of medication, it would probably be okay, but at this rate, I'm afraid he'll go without medication tomorrow morning AND the next day until the delivery, likely in the afternoon. I don't know what to do, as my vet doesn't routinely stock this drug, since it's pretty niche, and she's a small community practice. Is this likely to cause Wayne to have a major relapse or worsen his disease progression? Have any of you ever had luck with getting just a few tablets from a local pharmacy to tide you over until your full refill could be obtained? The only local vet pharmacy that carries the medication charges $185 for 30 pills, and I don't believe they will open a package to sell single pills, but of course I'll ask with the full expectation of being told no. I am so frustrated with this situation. We are not rich people, so we really feel the pain when we have to just thrown money away as I expect we'll have to do tomorrow at a local (very expensive) pharmacy. Ugh. Any advice? Should I cancel my order with this horrible online pharmacy and just bite the bullet and pay double tomorrow so that we don't miss a dose?

Thanks as always for your advice. I feel like I'm doing a terrible job taking care of this pup's medical needs right now :(

[labblab]

You are absolutely NOT doing a terrible job!!! You are working very hard to do the right thing for Wayne :-).

Missing a couple of days of Vetoryl should not be a huge issue. So if you believe the order from KV will actually arrive shortly, I wouldn’t invest in a supplemental supply from the local pharmacy. You may see a temporary increase in symptoms during the interim. But once Wayne’s cortisol is reduced again, you should be back on track.

As far as future orders, I’m not familiar with KV. In checking their website, it looks as though their prescription meds are filled through Pets Choice Pharmacy, which in turn is an arm of Lambert Vet Supply. We do have other members who have used Lambert, and perhaps you’d receive more satisfactory service if you ordered directly from Lambert. If you’d like to search for other alternatives and/or compare pricing, here’s a link to a listing of “safe” internet pharmacies that has been compiled by the National Association of Pharmacy Boards. The NAPB is a professional association that has been working to enhance a credentialing process for internet providers. After clicking on the link, just scroll down to the veterinary provider section.

https://www.safe.pharmacy/buying-safely/

Hopefully, this will offer you additional options for obtaining Wayne’s Vetoryl in the future. Longterm, if the cost of his medication becomes prohibitive to you, another possible option is to switch from brandname Vetoryl to a compounded version of trilostane that is individually prepared for Wayne. There are pros and cons to compounded products that we can discuss further. But for right now, hopefully you can find a provider on this list that is more reliable than KV has been for you.

Marianne

[Squirt's Mom]

Also talk to Diamondback Drugs out of Arizona. That is who many of us here use, including me. They have always been very prompt with both new meds and refills from my experience. Like Marianne said, you are NOT doing a bad job. You have no control of KV or the postal system but have done your part in getting these meds in. So do not let guilt get a foot hold - it is very hard to get rid of and you do not deserve to feel that way at all. ;)

Hugs.
Leslie

[labblab]

If you were to end up shifting to a compounded version of trilostane, then as Leslie says, Diamondback Drugs is definitely recommended and used by a number of members here. However, they do not sell brandname Vetoryl. So I’m afraid you will need to look elsewhere for the time being.

Marianne

[molly muffin]

Did you get any resolution with KV Supply? Did they agree to either, send immediately or refund money? If they will refund your money, you could try calling lambert directly. We have had others use them successfully.

[pibblesandbits]

I have talked to them by phone at least 3 times a day for the last week, and still no answer as to what is going on. It is maddening. I do need to demand a refund, but then they keep saying Oh we're shipping today. They've done this at least 5 times now. In the meantime, I have to spend about 3x as much to get the stuff locally tomorrow because it has now been two days since we've run out of medication. I have actually cried about it - maybe it's pregnancy hormones but I think it's mainly the frustration and feeling like I'm letting my big boy down. Ugh.

Since I'm going to need to switch pharmacies anyway, do you guys mind sharing what the drawback would be of getting compounded medicine? For myself, I am more than satisfied with generics, so I'm totally okay with using them for my dog family too. Diamondback got back to me with a quote and it is about half as expensive as the brand name vetoryl - I couldn't believe it! My experience with KV Supply has been incredibly frustrating, and I am sure I will never use them again. I am open to other pharmacy recommendations too if you have any other favorites and don't recommend compounds at this time for us.

[Harley PoMMom]

I like this post by Marianne to another member regarding compounding Trilostane:


You are correct that there is no generic version of Vetoryl available. When we discuss "compounded trilostane," we are talking about custom doses of medication containing that active chemical that are prepared by individual pharmacies (as opposed to pharmaceutical companies). Here's an excerpt from a related reply that I posted some time ago to another member.


Trilostane is the active ingredient in Vetoryl, and for dogs who need doses or forms of trilostane that are not available in Vetoryl, there are veterinary compounding pharmacies that will custom-make individual prescriptions. Compounded trilostane is generally much less expense than Vetoryl which is a definite "plus." There are also some "minuses" as well, in that a recent research study has shown that the products obtained from some (unnamed) compounding pharmacies are more variable in both actual dose and efficiency than brandname Vetoryl. For this reason, some vets do not feel comfortable prescribing compounded versions of the drug unless a dog truly does not have another option due to the size of the dose needed. However, we realize that for dogs needing big doses like Chloe, or doses that require the combination of multiple Vetoryl capsules, the expense of Vetoryl can be overwhelming, and compounded trilostane may offer the only affordable option for continuing with treatment.


Marianne

When deciding to compound, one has to make sure they are getting their medication from a reputable compounding pharmacy, many of our members use Diamondback as their online pharmacy agent.

Lori

[labblab]

At this point, I’d try calling Lambert/Pet’s Choice directly and ask them to intervene. Since they’re the ones filling the prescription for KV, they need to know what’s going on and all the hassle you’ve experienced. In reality, they ought to send you the meds by overnight express delivery, at no added expense to you. If it helps, here’s their contact page:

http://www.lambertvetsupply.com/about-pets-choice-pharmacy.html

And I’m glad Lori posted that reply of mine. If your vet is willing to shift to a compounded version of trilostane, then Diamondback is a very reputable provider. If not, let’s see how Lambert responds to your inquiry, as you may want to just shift to dealing directly with them in the future.

Marianne

[molly muffin]

Oh my gosh. KV's response is absolutely NOT acceptable! I'm onboard with marianne's thought to contact lambert directly let them know what is going on and see if they can/will intervene.

[pibblesandbits]

I think that basically having a breakdown on the phone with their customer service (during what must have been my 25th call) is what caused them to actually take action. I agree, it's totally unacceptable. I didn't even mean to get upset, but I was in tears and I said that my dog is suffering and their inaction was causing prolonged suffering. The only person who followed up with me was the woman who was on the receiving end of that. I finally have a tracking number - they sent the package by overnight shipping yesterday, and we should get it today. Hopefully, I will have a happy update to share by this evening.

I will note that Wayne's symptoms do seem to be creeping back a bit. He tore a dog food bag (luckily empty) to shreds out of hunger yesterday, after not exhibiting behavior like that in several weeks. And we've been getting hints again of the PU/PD, though it has not been in full force. I am so glad that he'll be back on the medication as of today. Poor thing. I will certainly never use KV Supply again. I had chosen them because they had the best price according to goodrx.com, and they said the medication was in stock for the past month, but I guess it just goes to show that I was an uninformed customer. If it had been one little hiccup, I would have forgiven it - after all, when we order online, we need to assume there could be hiccups, but this was beyond anything I've ever experienced. Anyway, we're going to be all set for medication for the next 30 days, thank goodness, so I presumably have plenty of time to get set up with a new pharmacy, starting today. I am going to ask my vet how she feels about compounded medications. I *so* appreciate everyone's advice here and their recommendation of another pharmacy that can do that. I'm surprised the Vetoryl doesn't come in a wider range of doses, but it's awesome that there are options for those dogs like Wayne whose weight falls in between dosages.

By the way, I am definitely going to let Lambert know what's going on. Based on the customer service reps' responses, they are used to dropping the ball - very good at apologizing, even acknowledging that nobody should have to put up with this, but unable to actually push anything forward. They explained to me that they didn't work for the pharmacy - they work for the company that owns the pharmacy, and they're not even in the same state. The whole thing is a mess. Anyway, I am so relieved that I won't have to deal with this mess too much longer.

Thank you all again! I don't know anyone in real life who has gone through a canine Cushing's diagnosis, and finding this community has been a godsend.

[DoxieMama]

Did you get the Vetoryl on Friday? How's Wayne doing now?

[pibblesandbits]

We finally got the medication! He's been back on it for 5.5 days now. His symptoms (PU/PD/polyphagia) had definitely started to return by the 2nd or 3rd day off the medication, and now they're starting to subside again, thank goodness. (I'll add that I almost hugged the delivery guy when the medication arrived. He was actually really sympathetic because he has lost a dog to cancer, and he still loves and misses her, so he knew what I was going through.)

But I've noticed that his skin issues are not really getting better - maybe because they need more time to heal? I would upload a picture if I could figure out how... It looks like really bad, big dandruff on his back. I don't think it's bothering him, but I don't know. Did you guys treat your dogs' skin with any special soothing preparations to help this kind of thing? I don't think it's worth a trip to the vet - it doesn't appear infected, it's not bleeding - it just looks uncomfortable to *me*!

[pibblesandbits]

Oh, and in other news, my vet is looking into whether or not compounded medication might be a good option for Wayne since he's at an unusual dose, so I'm waiting to get her opinion on that. I am hoping she's okay with that so that I can use the pharmacy that several of you here have recommended. Thanks again for that tip!

[labblab]

Thank goodness the Vetoryl arrived!!!! I’m so glad to hear that many of Wayne’s symptoms are lessening again. As far as the skin issues, unfortunately it can take a LONG time for them to resolve — like weeks instead of days. But the single most important piece of that is keeping the cortisol level under control. So now that he’s back on the medication, you’re heading in the right direction once again.

Marianne

[molly muffin]

This is really great news that the medication arrived and you can tell a difference already. yay! it would definitely make a difference cost wise and probably also reliability of delivery if you could use Diamondback.

But if you don't go to compounded then try Lamberts or another online pharmacy for delivery of vetroyl. This KV is not a good option I'm thinking. It's already enough worry dealing with cushings, you don't need to be worrying about getting the medication in time too.

[Junebugs]

We finally got the medication! He's been back on it for 5.5 days now. His symptoms (PU/PD/polyphagia) had definitely started to return by the 2nd or 3rd day off the medication, and now they're starting to subside again, thank goodness. (I'll add that I almost hugged the delivery guy when the medication arrived. He was actually really sympathetic because he has lost a dog to cancer, and he still loves and misses her, so he knew what I was going through.)

But I've noticed that his skin issues are not really getting better - maybe because they need more time to heal? I would upload a picture if I could figure out how... It looks like really bad, big dandruff on his back. I don't think it's bothering him, but I don't know. Did you guys treat your dogs' skin with any special soothing preparations to help this kind of thing? I don't think it's worth a trip to the vet - it doesn't appear infected, it's not bleeding - it just looks uncomfortable to *me*!

Hello! I just wanted to chime in regarding Wayne's skin issues, and share my experience with Kaiser. Kaiser had the same, really bad dandruff that looked like very large flakes. I bought a flea comb, and would sit for long periods painstakingly combing through his fur to remove as much as I could. He has a very long double coat, so it truly was painstaking! Like Wayne, it did not seem to bother him, although it looked uncomfortable. Then the crusty bumps started... Down his spine, then down the flank. I started spraying daily with an itch soothing spray (Burt's Bees). His chiropractor recommended bathing him frequently with moisturizing shampoo (I bought HyLyt shampoo with essential fatty acids). She also recommended a special spray called Douxo Micro-emulsion spray. It did get worse before it got better, requiring a couple rounds of oral antibiotics, but I had read somewhere to expect that. After 2 months on Trilostane it had improved by probably 70%. Progress seemed slow at first, but I just kept on track with the protocol and combing. Also, in regard to online Pharmacies, I have been buying Trilostane from valleyvet.com without any issues at all.
Hope Wayne feels better soon!!
Theresa

[pibblesandbits]

Well, it seems like it's two steps forward one step back with this poor dog. Over the last few days, starting Saturday night, he developed a slight limp. It was at first just in his rear right leg, and now it seems like it's also in his front left. He seems so sore and weak, I had to lift him onto the bed with me. He was given tramadol by the previous vet for arthritis, so we have restarted that but it does not seem to be helping. I feel guilty bringing him out on walks, and he pulls backwards to try to get out of going, even when he knows he needs to pee. I don't know what to do. The new (good) vet said that maybe it's a small injury or something and to give it 5 days and then call her. It definitely doesn't seem to be getting better though - if anything, it's getting worse. What is happening to the poor guy? Is this a sign of serious decline? What would come on so suddenly? He was doing so much better mobility-wise until this most recent thing. He still has his appetite and is interested in drinking, so it doesn't seem Addisonian - I am just wondering if this is another Cushing's symptom, and if so, why would the timing be the way it is? He's been back on the Trilostane for 2 weeks now. Could his dose still be too high? If this is a sign of joint degeneration from the months of high cortisol, why would he suddenly be limping severely? I am really scared that this is the beginning of the end for him, and it is so upsetting.

[DoxieMama]

I'm so sorry for this new issue. It may be that when his cortisol is higher, it is "masking" symptoms from arthritis (or an injury, like your vet said, especially since it seems to have come on suddenly). But then I'd think the tramadol would be helpful. I wish I had a helpful suggestion to offer!! Hang in there..

[Squirt's Mom]

Is Wayne by any chance eating raw chicken? A study in Melbourn, AU has found that dogs who eat raw chicken have a 70% higher risk of developing a rare paralysis that starts with weak back legs. Here is the info just in case -

http://onlinelibrary.wiley.com/doi/10.1111/jvim.15030/full

[pibblesandbits]

Squirt's Mom, that is terrifying - thanks for sharing. Luckily, no, he doesn't eat raw chicken, just Taste of the Wild dry dog food.

DoxieMama, I had the the same theory, that the cortisol was masking his arthritis symptoms, as his levels come back down into normal range, we're seeing just how much it affects him and his mobility. After all, cortisol is essentially what we'd give him for inflammatory disease treatment, so taking it away is bound to uncover something. He does in fact have arthritis, but the onset of his limp was very strange. The vet said we could get an X-ray but that seems like overkill -- Maybe he just needs to take more than the minimum dose of tramadol. He is allowed up to 6 pills per day but he's only getting 2 - unfortunately, that does not seem to be helping. I didn't want to ramp him up too quickly on that because of the stomach upset side effects but we should probably do that before we assume anything terrible. I wonder if all that cortisol in his system for those many months would be enough to cause hip degeneration? Because it really seems to be mostly his back leg, and maybe a little overcompensation in the front leg. I have no idea how to evaluate this on my own, so an expert opinion will be helpful. I just feel like we're going down an endless rabbit hole with trying to figure out what is going to take him out next. This is all so challenging. I am so glad you guys understand what we're going through.

[molly muffin]

I'm inclined to think the same that this is arthritis showing up because the cortisol is being lowered.

It can be a balancing act to find the right level of cortisol with a dog who has other issues such as arthritis. If it were me, I would want to bring the cortisol up just enough that he isn't in any pain while still doing a tolerable job of controling the cushings.

[pibblesandbits]

Good news, I think the limp is almost gone! He didn't even take his pain pill yesterday or today, and so far so good! I am so relieved. It's possible I irritated his hip joint lifting him into the car last week (he's a big boy and I'm super pregnant so I'm sure it wasn't the most elegant lift). He's still resisting longer walks but he is no longer refusing to go, so that's a big improvement. Now we just need to keep a close eye on him and make sure it doesn't return!

[molly muffin]

That is excellent news and of course anything can strain a joint and then they just require time and rest for it to heal. So maybe that was the cause. Eeeek, hard to life a big dog when pregnant!

[pibblesandbits]

Well, a new limp has now shown up. I really don't understand what is going on, but it's pretty clear that it's not due to an injury. This poor guy just cannot catch a break. And his skin problems are not really resolving. I think he needs to be seen sooner than the vet expected. I'll post any updates once he's seen. I hope it's something simple... and easily treated.

[DoxieMama]

Poor boy... will keep you guys in my thoughts and hoping right along with you. Let us know~!

[molly muffin]

Did you go to the vet yet? What did he say about the new limp? Is it any better?

[pibblesandbits]

The limp disappeared within 24-36 hours! It's so weird, it's like temporary, migrating arthritis!

[pibblesandbits]

Oh, and his skin is mostly just dry now, I think it's in the recovery phase from what was a pretty nasty infection that flared up right around when the pharmacy left us without meds for several days. As soon as he was back on the medication, it was like his immune system kicked into overdrive and went crazy on the infection to knock it out. We had been doing chlorhexidine baths 2-3 times/week, but now I'm just doing it once a week until this has completely gone away, even though I'm pretty sure the infection is gone and it's just dry flakes where the skin is regenerating underneath. Poor guy, he gets a lot of sideway glances for his "dandruff", but at least I know he's no longer uncomfortable.

[pibblesandbits]

One last thing that I am hoping you guys can level with me about... did anyone else feel like they were just watching their dog fall apart piece by piece? Did anyone experience a long stretch of symptom-free, complication-free, worry-free time with their dog(s) after receiving this diagnosis? I guess I just hoped that after suffering for so long before being diagnosed that he'd have some adjustment period where things were a little unstable and in flux but that eventually they would settle down... but now I'm wondering if that was naive of me. Is he just destined to have one thing go wrong after another for the rest of his life? That really frightens me. For the most part he is doing so much better, and I no longer feel like he is actively dying, like I did when he was very sick pre-diagnosis, but I think I may need to adjust my expectations for how much quality of life he is going to recover now that he's receiving treatment.

If any of you can talk some sense into me or give me a realistic outlook for what I can expect, even if it's just based on your own experiences, that would be so helpful, because I am scared sometimes that he's now destined for a life of illness after illness. Is that what life is like even with managed Cushing's?

[Squirt's Mom]

My Squirt was on her journey for 7 years after we first heard the word "Cushing's". For the most part, her journey was non-eventful but her story is not typical. She started out with Atypical Cushing's (meaning the cortisol was normal but intermediate, or sex, hormones were elevated). She remained with this form and on the treatment for it, melatonin and ligans, for about 3-4 years. When her cortisol started to rise we added Lysodren to her regime. And we had no issues with the treatment I chose for her - she stayed on the same dose and did very well on that dose.

She was around 9 when I was told about the elevated cortisol via pre-lab work for a dental. That was followed by testing which showed a tumor on her spleen when she had the ultrasound. Once that tumor was removed, her cortisol returned to normal but the intermediates remained elevated. She suffered a pancreatic reaction after this surgery due to that organ being handled and had to go back to the hospital for 4 more days. When she was 2 she had both knees operated on, one was deformed at birth, and after being diagnosed with Atypical she had to have one of them re-done. As she aged she developed the usual things we see with older dogs - diminished vision and hearing, arthritis, and in her last years, dementia. But in spite of the challenges my Sweet Bebe faced during her journey, hers was smooth sailing.

It is hard to separate Cushing's from other health issues. Once our baby has been diagnosed with Cushing's we tend to contribute every thing going on with them to that disease....and sadly so do many vets. Tunnel vision is one of the worst "side effects" parents AND vets experience with canine Cushing's. We have to understand that very often these babies are older when diagnosed with Cushing's and many of the things that happen would have happened regardless, without Cushing's in play. ;)

And I think all of us cush parents tend to become anxious about every little thing! I know I did! :D If one hair was different or she gave me an odd look or ANYthing, I flat freaked out. :eek::D:o:D I just knew each those little different things meant the end, that the Cushing's was progressing and that once again I was helpless to do anything about it. If not for my family here at K9C I truly think I would have ended up in a mental institute. :D It took extreme effort on my part to relax and try to enjoy every minute I had with my Sweet Bebe, to put Cushing's (and all the other wild thoughts on my mind!) in a box and forget about them for a while even as I went about taking care of her and doling out meds. So you are not alone in your feelings. MANY of us here have gone thru the same process. Most came out the other side just fine but I was "off" going in so..... :D:p:D:D:p:D:D

Just keep talking to us and know any time you have something concerning you or you just need to chat, your family is here to listen. We may not have the answer but we do have strong, soft shoulders to lean on and loving arms to hold you.

Hugs,
Leslie

[Joan2517]

Ditto to what Leslie said. I think once you have a Cushing's dog, that's all consuming. Lena has been gone two years and I can still remember obsessing over every little thing. I still do it with my other babies. If they drink too much, it's CUSHINGS! If they eat too much it's CUSHINGS! Panting, same thing...

Cushing's does a number on our minds. I'm so afraid of going through it again, but keep looking for signs at the same time.

[pibblesandbits]

Your responses have literally moved me to tears. I cannot even begin to express how grateful I am for this feedback. I think you're both right that it's really hard not to see everything now through the lens of Cushing's. I need to try not to make *myself* sick over this, but it's hard. He has really regained so much quality of life since starting treatment, and I am so happy to see that, but the fact is that he's still an older dog, and I have to wrap my head around that separate fact too. It's so hard. The words I would've used to describe him 1 year ago are joyful and buoyant (he seemed so much younger!), so it's been really tough to watch his decline. Of course it's probably also been almost a full year since he was himself completely, and in dog years, that's a lot of time, so I can't separate out what's aging and what's disease. I will return to your words again and again when I need to chill myself out over the hiccups in his recovery process.

Thank you both so so much!

[molly muffin]

I definitely agree with Leslie and Joan. Cushings is an all consuming diagnosis. I think it is because, we are always aware of it, always having to test to check cortisol levels, adjust medications, so the worry is constant. Then we know that there are other things that we have to watch out for, like liver and kidneys. But that might have been a worry without cushings as she got older, who knows for sure.

I know that I worked from home at least 2 days a week and often would leave the office at noon and come home and work the rest of the day from home to be with her. That I scheduled ACTH and other tests at the IMS on Wednesdays, and if I could get by without going once a month it seemed a miracle, and that after work I took her to the vet near my house for her BP checks and that with all that, my days, my nights, my vacations and life, revolved around my Molly and how she was doing. When we lost her, to kidney disease, it felt like there was such a hole, not only because she was gone but because suddenly cushings or something involved with cushings and her health wasn't going on all the time.

The thing is that I'm not abnormal in what I did, I'm really much the normal for what we see on here. Cushing does become a lifestyle of worry for our furbabies.

[Joan2517]

I think we all wind up with PTCD....Post Traumatic Cushing's Disorder. I know I have it.

[pibblesandbits]

I have been thinking it's actually really good to be on high alert for complications since they are so prone to them. Wayne now has his third infection since diagnosis. This time... it's his prepuce (penis), with a little brewing UTI too. Poor guy :( He's in a cone to let it heal, and they're blasting him with both systemic antibiotics and topical antibiotics/antifungals.

The vet visit in our new neighborhood to get this very obvious thing diagnosed cost over $450! We literally spend more on his healthcare than on all 3 human family members combined (soon to be 4), including one with type 1 insulin-dependent diabetes (and insulin is not cheap)! I think it's too late for pet health insurance though now that he's got his Cushing's diagnosis. I would urge anyone who is new to these boards and suspects their pet has Cushing's to consider getting health insurance for their pet *now* so that the condition and its treatment is not excluded from coverage the way that pre-existing human conditions often are. This is a very expensive disease to treat and stabilize. We literally cannot afford anything else. We looked into the Human Society's clinic in our city for more affordable care, but they don't really deal with complicated conditions.

Does anyone have any other suggestions on keeping costs down? My contribution is to use a compounding pharmacy if you're using trilostane, because the brand name stuff is obscenely expensive, and to call around for quotes on the ACTH stim testing, because there is an unbelievable range of prices out there, and there are certainly vets who will take advantage of you and charge as much as they think the market will allow.

[molly muffin]

You're right and it's worth it to have pet insurance from the beginning. I let mine drop before molly got cushings and kidney disease and definitely paid for it out of pocket.
The things you mention are the best things to do to keep cost down, use the compounding pharmacy, Diamondback is a reputable one, and make calls around for best pricing.
We were very lucky to have an IMS who also would help with cost, by running in house tests when outside lab tests weren't needed, and who charged recheck ultrasounds after the first one (instead of full price) I never paid more than 70. for a follow up ultrasound and sometimes when she would check something, as she said, her hand might slip and just take a run over those kidneys, liver, pancreas, adrenal glands with the US wand. I loved the way she would say that, my hand slipped and the kidneys haven't changed any btw LOL

I'm so sorry that your boy now has another complication to deal with and oh the dreaded cone of shame too. Poor guy.

[pibblesandbits]

Just wanted to update in case anyone comes across this thread later. Wayne is doing so well! I feel like I've gotten my dog back! I know we might be dealing with infections more frequently than we would if he hadn't gotten Cushing's disease, but it feels truly miraculous to me that a dog who seemed so close to death could bounce back as well as he has. I am so thankful for the vet who figured it out and to this community for helping me through what has been a really challenging time. We are still struggling to deal with the expenses of treating all these infections, but the reference I got here for a compounding pharmacy has been a huge help and has saved us quite a bit of money (that we can now spend on antibiotics I guess). Anyway, thank you all so much. And if you're in the boat we were in 6 months ago, know that there is hope!

[Budsters Mom]

Such fantastic news!! Thank you for coming back to let us know. Love to read good news!!

[labblab]

Yoo Hoo, what great news indeed!! Thanks so much for taking the time to update us! We love hearing success stories, and we wish you guys continued improvement ;-).

Marianne

[Squirt's Mom]

Great update! So happy to hear that Wayne is doing better! As for expenses, check out this link (you may find some aid you qualify for) - http://www.k9cushings.com/forum/showthread.php?212-Financial-Resources-to-help-with-Vet-bills

[labblab]

I’m so glad Leslie gave that link to you, and one additional thought occurs to me. Just within the last couple of weeks, those of us in the U.S. have learned that many vets in the U.K. and Europe have shifted away from using ACTH stimulation tests to monitor trilostane treatment unless there is a worry that a dog’s cortisol may have dropped too low. Instead, they are simply measuring resting cortisol right before the next dose of trilostane is due to be given. New research supports the notion that this actually gives better guidance re: the need for dosing increases, and it’s certainly a heck of a lot cheaper. Take a look at this link and the monitoring flowchart that’s included. Your vet may be very interested in this info, as well, and might be willing to investigate it further on your behalf.

http://www.k9cushings.com/forum/showthread.php?185-Trilostane-Vetoryl-Information-and-Resources&p=1252#post1252

Marianne

[pibblesandbits]

Very interesting, Marianne! I think the vet who figured out the diagnosis tries to be very cost-conscious for her clients, but I admit I would feel very awkward giving advice to her on how to save us money... But this is really fabulous news, and I will keep it in mind. Maybe she'd be willing to work with us to implement this alternative testing method starting after the next ACTH test.

And Squirt's Mom, I will check those out! Thank you for the link!

[labblab]

Your ace in the hole, though, is that the researchers are endorsing this protocol not because it’s cheaper but because they believe it actually provides more accurate information upon which to base dosing decisions. The fact that it’s cheaper is a fringe benefit ;-).

http://veterinaryrecord.bmj.com/content/179/23/597

[pibblesandbits]

I just read the study - how awesome! I would feel way less awkward broaching the topic with my vet if I had something in hand as good as this. Thank you so much!

[pibblesandbits]

Okay, so maybe I spoke too soon... Wayne seems to have yet another infection. This time it is on his lower eye margin (though not the eyeball itself, more like the lower lid). It was not there last night, and this morning, it is swollen. At first it looked like his eye was bulging out but on closer inspection it looks like just the skin beneath his eye. Either way, it is scary. I am assuming it is an infection because of the Cushing's but I am wondering what else it could be, so we'll be making another trip to the vet. We just finished the antibiotics from his prepuce infection a few days ago! I really hope this isn't some kind of drug-resistant bacteria that survived the 2 weeks of antibiotics, but of course I'm getting ahead of myself. I will keep you guys posted. I hope this isn't related to growth of the pituitary tumor - I know that can cause visual problems, but I didn't think it would cause symptoms like this.

[Harley PoMMom]

Oh dear, poor you and poor Wayne :( Do let us know how it goes and good luck.

[molly muffin]

Oh no! Just when he'd been doing so very well. What did the vet say it is?

[pibblesandbits]

By the time we got to the vet the swelling had completely disappeared! He must've just bumped into something or had some sort of allergic reaction that was short-lived because if it had been an infection, it would have taken much longer to go away. I just assumed it was another infection. It looked terrible.

This dog really keeps me on my toes!

[molly muffin]

Our Vet ER is 20 minutes from the house and there were a number of times that we took molly in only to have her be fine by the time we got there and the vet could check her out. (the admins probably remember, as I think I texted the forum every time we were there and I was in panic mode. not sure why it always happened late at night either) sigh Glad that it is okay now though. :)

[pibblesandbits]

Dogs and kids have impeccable timing. Our daughter also only gets sick on Friday and Saturday nights, basically whenever the pediatrician has just closed for the weekend :/

We are so relieved that it wasn't another infection. Just keeping a close eye on him for the next one, since we absolutely know it's coming...

[pibblesandbits]

Checking in because it's been a while. Wayne is still hanging in there. We fear his disease is progressing now as his appetite and thirst have not been great despite the massive doses of trilostane, and he has started to lose his hair again, especially on his hind quarters and shoulders. Has anyone experienced this? At first I thought it was normal shedding but I've never seen a dog lose this much hair every single day. Does anyone have similar experiences they can share? Happy belated Thanksgiving, everyone! I hope your furry friends are doing well and your human families too :)

[Harley PoMMom]

When you say that his appetite and thirst aren't great, what exactly do you mean? If he isn't eating or drinking much than his cortisol could have dropped too low. When was the last time his cortisol and electrolytes were checked?

Lori

[pibblesandbits]

TW: death

For closure, I wanted to report that my sweet boy Wayne has passed away. It actually happened in November 2019, 6 months ago, and I am still sad about it. I am crying just trying to write this post.

The cause of death was either a large intracranial mass (tumor) or pituitary apoplexy (where the pituitary itself hemorrhages, causing a large bleed in the brain), which they had to consider given his history of Cushing's disease. He was in status epilepticus (nonstop seizures) at the end, so it was not possible or reasonable to get him scanned to figure out the exact right diagnosis. He died with me by his side, and when they brought me back to the resuscitation room at the ER where they were treating him and I laid my hands on his pitiful frame, he let out a big sigh of relief, and I really believe he knew I was by his side. Prior to that during the seizures, I certainly do not think he knew what was going on, so I am so glad I got that moment with him. For anyone local to NYC, I recommend AMC Animal Medical Center for your dog's care. They were absolutely amazing and I am so grateful to them.

Hug your loved ones, and stay safe during these strange times of pandemic. <3

[Joan2517]

I'm so sorry for your loss of sweet Wayne. I'm on Long Island and we have used the AMC before when our Saluki was diagnosed with Canine Lymphoma in 1996. They were wonderful.

When my Lena had heart issues four years ago, I was going to take her there to see a cardiologist, but she died in the Emergency Clinic that same night. I still cry....

[Squirt's Mom]

Dear Pibblesandbits,

I am just so sorry to hear about our sweet Wayne. The pain you feel still today is something I know so well and I can tell you it does get better. It may never go away but it does become more bearable with time. That old saying that time heals all wounds? Not true. But time does let us learn how to carry those wounds, and often carry them with grace. I have no doubt that your precious baby boy knew your hands were on him in his last moments here in this life and knowing that, a great peace came over him allowing him to leave on wings of love. Since then he has seen every tear, heard every sob, shared every memory. He is now watching over you just as you watched over him for long. It is my firm belief that one day we will see out beloved babies again and on that day they will fly into our arms to cover our faces with kisses. Our fates are locked together for all time because loves like this can never fade.

Please know we are here anytime you wish to talk and we would be honored to celebrate the life you and Wayne shared if you would like to start a memorial thread in the In Loving Memory section. We DO understand what you are going thru.

My deepest sympathies,
Leslie



A Blessing For Absence
by John O’Donohue

May you know that absence is full of tender presence
and that nothing is ever lost or forgotten.

May the absences in your life be full of eternal echo.

May you sense around you the secret Elsewhere which holds
the presences that have left your life.

May you be generous in your embrace of loss.

May the sore of your grief turn into a well of seamless presence.

May your compassion reach out to the ones we never hear
from and may you have the courage to speak out for the
excluded ones.

May you become the gracious and passionate subject of your own life.

May you not disrespect your mystery through brittle words or false belonging.

May you be embraced by God in whom dawn and twilight
are one and may your longing inhabit its deepest dreams
within the shelter of the Great Belonging.

From Eternal Echoes

[Harley PoMMom]

I am so sorry for the loss of your beloved boy, Wayne, and my heart goes out to you. Please know we are here for you and always will be, if you should ever need to talk, please please, come back to us.

Hugs, Lori