Cleo - Just beginning on trilostane

[cleogirl]

I am new to this site. We just started treating our dog cleo with trilostane. less than 48 hrs on the medication she decreased her drinking and had no accidents. then on the 5h day, it started all over again. she leaks thru everything including the sitstay diapers we ordered for her. she is 110lbs and seems to have so much fluid. any advice on how anyone has handled this is greatly appreciated

[Harley PoMMom]

Hi and welcome to our family!

I am so sorry for the circumstances that brought you here but very glad you found this forum. We will help you and your sweet girl in any way we can.

Could you tell us more about your girl...what dosage of Trilostane she is on and if it is given once or twice a day. What test/s were done to confirm her Cushing's and if you have copies of the test/s could you post the results here.

Many cush-pups do get UTI's (urinary tract infections) and this could make her have accidents. Has she been checked for an UTI and/or diabetes?

Please know we are here for you and your sweet girl, so ask all the questions you want and we will do our best to answer them, ok? ;):)

Love and hugs,
Lori

[cleogirl]

lori,

thanks so much for your quick response.
cleo had the ach test and confirmed cushings a little over one week ago. I don't have a copy of the results from my vet, but will definitely ask for it. she is on 0.5 twice daily. she had also initially been diagnosed with a uti that she was being treated for with clavomax, although my vet had told me to stop this 7 days after she started taking. I actually just spoke to the pharmacist about the medication since I am making my vet crazy and she told me I really have to wait til her next test to see where her levels are. I know her blood work didn't show the elevated levels that typically would prompt a doctor to run the cushings test. Her level came back at a 22.6 is all i know. if anyone can make a suggestion to help control her loss of bladder control is greatly appreciated. I am having a tough time dealing with it and I have to start travelling for business next week and I am so worried about her.

[StarDeb55]

Welcome to you & Cleo! For as big a girl as Cleo is, 0.5 sounds like a very small dose. Is this perhaps liquid trilostane? If it is liquid, the liquid will have a concentration on the label, something like 100 mg/ml, 200 mg/ml. If this is, indeed, liquid, please tell us what the concentration is.

As Lori has already mentioned, if you could round up all the testing that was done to diagnose Cleo, it will help us give you more appropriate feedback. We would also like to know what symptoms have been bothering Cleo that led you to take her to the vet. Does she have any other health issues? Is she on any medication or supplements? Lastly, have diabetes & thyroid been ruled out?

Debbie

[Harley PoMMom]

lori,

if anyone can make a suggestion to help control her loss of bladder control is greatly appreciated. I am having a tough time dealing with it and I have to start travelling for business next week and I am so worried about her.


If the leaking you are referring to is age related loss of muscle tone (which is common) there are good medical treatments.

Proin is one med and DES the other. I prefer the DES as it is a synthetic form of the natural hormone which is lacking in those dogs for which the treatment is indicated.

Best wishes. Scott

Hope this helps...Also did your vet run an urine culture? And was Cleo's urine retested to make sure that the UTI was taken care of?

Love and hugs,
Lori

[cleogirl]

debbie/lori,

thank you both for replying so quickly
yes cleo is taking a liquid does that is 250mg twice daily. cleo did have a uti and she has been taking clavomax.
as far as symptoms, she had been losing her hair for some time and our vet had done blood work twice and nothing had shown up in her levels that would indicate cushings. last weekend she started having alot of accidents and we took her to the ER. The ER doctor took one look at her and told us she thought it was cushings, but of course to have her tested. since she is such a large dog, they didn't have the ACH test available for her size so we had to wait 2 days for my vet to get the test and diagnose her. the trilostane seemed to work on day 3, there were no accidents. I had cancelled my vacation to be with her and sent my husband and daughters onto universal. she had no accidents while they were gone, but started when they got back, coincidence? I don't even know. yesterday was another tough day of accidents and today so far only 1, but they typically come after 4 at night and continue for hours but then she has had no accidents overnight. she only gets water when she eats in the am and then in the pm so I really don't understand where all the fluid is coming from. I spoke to the pharmacist today and she said its really a wait and see until the next ACH test to see where her levels are. As soon as I can get the original test results I will post them. thank you both

[cleogirl]

debbie,

cleo has no other health issues. she does take fish oil once daily, msm and glucosamine. her need for water seems to have increased since yesterday so I really don't know what to think

[StarDeb55]

Just to clarify, the concentration of the liquid suspension is 250 mg/ml, Cleo is getting 0.5 ml twice daily for a total of 250 mg trilostane per day, correct? 250mg of trilostane sounds like a huge, huge dose, even for a big girl like Cleo. Dechra's current recommendations are 1 mg/lb, with the consensus being to start at the low end & work up, if needed. Several members have spoken to Dr. Allen at Dechra, their vet technical rep, & these are the verbal recommendations that they are making. The drug brochures may not be updated to reflect that.


she only gets water when she eats in the am and then in the pm so I really don't understand where all the fluid is coming from

This concerns me greatly. Have you been limiting Cleo's water to try to lessen the accidents? If so, please stop. Our pups do not pee buckets because they are drinking gallons of water, it's actually the other way around. They pee buckets because of the cortisol's effects on the kidneys, & they must drink copious amounts of water to keep up with what the kidneys are doing. Limiting a cushpup's water can cause them to dehydrate very quickly, making them very ill.

Debbie

[cleogirl]

debbie,

yes, that is the does that she is getting twice daily. I not only spoke with my vet numerous times about this, but also the pharmacist we got the medication from.
as for limiting the water intake was what the vet recommended. I haven't read much of any dog in the situation that cleo has been having as far as the accidents. I am really at a loss of what the next steps are

[cleogirl]

debbie, if I am not to limit the intake of water and I can't control the accidents what do you then suggest? she hates to be secluded from the family (I don't blame her, although we have tried cordoning off an area in the kitchen so she can see everyone) when we try to leave the pads underneath her to avoid too much water on my floor or carpeting she typically will soak thru them. do you have any other suggestions? we certainly aren't trying to dehydrate, we certainly don't want any add'l issues for her. she is soooo sweet and loving

[StarDeb55]

I had the same issues when my last boy was still with me, but I will say that he was just a little guy. I found the cost of "piddle pads" to really be a lot of money, so another member of this group suggested buying the incontinence pads for beds that they use with human patients. They get soiled, you just throw them in the washer. IMO, they are thicker, more absorbant than the "piddle pads". I'm alone, so the hard rule I had was that when I left the house, the pups were placed in their kennel in the living room which was lined with these pads. I'm at home, they are out & about, I simply tried to keep pads in the areas that I knew they would most frequently pee. I really understand how frustrating this can be as it was a constant battle for me. I ended up buying a Hoover Floormate that made clean up on my tile much easier. I know some members have tried "doggie diapers" to try to help with this problem, but I have no experience with them.

Debbie

[cleogirl]

debbie,

she goes right thru the "doggie diapers and the pads"
I do have the inside of her bed lined with the pads but with the constant accidents and the shedding of my other younger dog makes it almost impossible for me to keep up with washing. I will certainly look into the incontinence pads to help keep up with the accidents. I really didn't know that the excess drinking of water was not to be curtailed. My vet also had a dog with cushings and she didn't tell us to not curtail the water but to continue to limit. of course, when we find her looking for water constantly we still will give her a bit. so far today she has not had the incidents she did yesterday. as for the hoover floormate, I will also look into how they perform on wood floors. the other issue is that our family room has carpeting and she typically wants to be with us no matter which room we're in. thx again for your advice and support. I can only hope we see improvement again and that we can get under control. Its been very emotional for me

[lulusmom]

Hi and a belated welcome to you and Cleo

And I thought I had it bad with the voluminous amount of pee coming out of my 6.5 lb cushdog. He pees buckets and I can't even imagine what it must be like to have a 110 pounder peeing lakes. I use hospital pads in my house too and I do a load of laundry every day.

Now here's the good news. There is a 99% chance that Cleo's excessive drinking and peeing will resolve once the treatment brings her cortisol down. Most of the time, we see this symptom improve fairly quickly, if the dose of Vetoryl is adequate. However, some dogs may take longer. Most cushdogs go through a process called renal medullary washout which means all of the stuff in the kidneys, namely salt concentration, needed to concentrate the urine, has been washed out. If a dog has been drinking and peeing excessively for a very long time, it can take longer for the kidneys to get jump started and start concentrating again. I know how hard it is to be patient when your dog is peeing frequently and peeing huge amounts and unfortunately, the pharmacist is right....it is a waiting game and you'll know a lot more when you have the first post treatment acth stimulation test.

I would have to agree that 250mg a day is a pretty darn high dose to start with; however, I will say that a reknown intermal medicine specialist, Dr. David Bruyette, has said that in his practice, they have started dogs on 5mg per kg of weight which is exactly the dose Cleo is on. My comfort level with that dose is improved greatly by the fact that Cleo has been on that dose for at least 5 days with no ill effects. Every dog is different and you just never know how sensitive a dog will be to the drug. For instance, my tiny 4.5 lb Pom was started on 20mg which is equal to 20mg per kg and we had to increase her dose to 30mg, which is equal to 14mg per kg. Nevertheless, just know that Cleo is on a hefty dose and you need to keep a close eye on her.

What other tests were done to diagnose Cleo? I see that she had an acth stimulation test and if the 22.6 you posted was the post stimulated number, then that would be considered borderline positive for cushing's. Your vet should have done additional testing, if for nothing else, to determine if Cleo has a pituitary tumor or an adrenal tumor. Was an abdominal ultrasound done? Did your vet tell you which form of cushing's Cleo has?

You mentioned that Cleo was diagnosed with a UTI and was only on clavamox for 7 days. UTI's are not easy to resolve and you should give antibiotics until gone and sometimes it requires a second bout of treatment. With your vet stopping treatment after only 7 days, I suspect that Cleo still has a UTI. I believe Lori already asked you and if you answered, I'm sorry for not catching it but did your vet did a urine culture?

Glynda

[cleogirl]

glynda,

so greatful of any responses I receive.
I continued the dose of clavamox even after my vet mentioned I could stop although I did stop for 2 full days. she hasn't recommended a retest on the uti, but I certainly appreciate your input. I figured the ER vet didn't give me 2 weeks worth for nothing after thinking more about it. I had gone further and questioned if I should test her for adrenal vs pituitary and asked another vet within our area. she gave me some comfort for this and told me we didn't necessarily have to test her just yet but to see how the next ACH test goes. I am keeping a very, very close eye on her to ensure no add'l changes in her demeanor, diet, etc. I will continue to monitor her and let my vet know of any changes since I am trying to be vigilent to ensure her path to help try to control. I can't thank you enough for your input. Pls keep them coming. Its been somewhat helpful to reach out to others who have had to work with this disease.

[cleogirl]

hi all,
i just rec'd cleo's results from my vet. there are alot of different results that I have rec'd but not sure which ones to post or maybe I should be posting them all. was there any specific test results I should be listing? my vet had asked me to increase the dose she has been rec'g from 0.5 to 0.7 (liquid form) since she continues to have accidents. there are some days where she hasn't had any accidents, but tends to have them mostly b/t 4-10. she hasn't had one overnight. pls let me know what test results I should be posting. thx

[cleogirl]

here are some of the test results, pls let me know what else I should be posting, I am only posting the results that show on the high side according to the vet's report. these enties will be updated in the mourning fom me. will post the rest tommow.
pre acth: 4.3
post acth: 22.6

chem test 27 ref range
alk: 198 (10-150/ul)
alt: 98 (5-107 u/l)
ggt: 15 (0-14 u/l)
tco2: 26 (17-24 mEq/L)

neutrophil seg: 79 (60-67%)
auto platelet: 493 (164-510 THOUS./uL)


chem test 25
alk: 147 (10-150 U/L)
alt: 98 (5-107 U/L)
ggt: 12 (0-14 U/L)


cbc comprehensive
neutrophil seg: 79 (5.5-8.5 million/u/L)
mchc: 42 (32-36 g/DL)

[frijole]

Different labs have different normal ranges so if you could put the ranges behind each of the readings it will help us understand what is going on. Also if there are any comments on the tests or any + or * with comments include those.

I will say that the alk phos level is VERY low for a dog with cushings. This is a liver enzyme and it is the one that is usually the most out of range.

Thanks! Kim

[cleogirl]

the forrn i rec'd in adobe and i don't have the capabilities to export to excel

[Harley PoMMom]

If you could edit your post with the Lab results and type in the reference ranges that would really be helpful...ie...ALP 1200 (10-150 U/L)...Thanks!

Love and hugs,
Lori

[cleogirl]

hi,

I updated and posted the ranges for the lab results. thx for any input

[cleogirl]

Just curious on about the accidents cleo continues to have, it seems she only has them typically between the hours of 4-10 at night. does that seem normal for a cushings dog?

[addy]

Hi,

I can't answer if it is normal. What time does she eat? Does she get any medication around that time? My Zoe eats twice a day and chews her Kong, then drinks a lot of water after chewing. She gets her melatonin in the morning after breakfast and then again beofre bed. She seems to need to go out to urinate more times between the hours of 6:00 and 10:00 am than any other time of the day or evening but that is the time she chews and drinks the most so that is why I wondered about any food or pattern or medicine or chewing that might be going on at that time for Cleo

Just a thought:)

Hugs,
Addy

[cleogirl]

addy,

she eats b/t 5-6 and doesn't have anymore or less at that time that she would during the morning hours. she has been getting her medicine after she eats twice daily. its the strangest thing that 95% of her accidents happen b/t those hours. I just came back from a business trip and my husband and daughters were home but she's my 3rd baby and I know I spoil her more, but I am so concerned I can't figure out why it continues to happen even though the vet asked us to increase her trilostane. I plan to call the vet again in the morning since I can't understand and its killing us.

[cleogirl]

kim, what is the alk phos pertain to? and why do you think its too low for a cushdog?

[littleone1]

Hi,

I'm sorry Cleo is having accidents. It does seem strange that she only has them between those hours.

When you said that she takes her medication after she eats, are you referring to the Trilostane? Trilo should be given with food.

Terri

[frijole]

kim, what is the alk phos pertain to? and why do you think its too low for a cushdog?

Sorry, I wasn't clear... the alk phos is a liver enzyme and it is normally very elevated in cush dogs. I don't know what the range is from that lab but we often see numbers at 1000 to 2000 so Cleo's level was closer to normal than most cush dogs is what I was saying. That is a good thing. :D Kim

[cleogirl]

kim, ok thanks for getting back to me. if the range prior to medication is normal, what do you surmise that means?

[cleogirl]

terri, yes cleo is given the trilo after she eats in the morning around 8 and then again b/t 5-6. I am just starting to wonder if there's something else going on. I asked my vet again about diabetes insipidus, but she is still certain its all cushings.

[cleogirl]

So I was just told by my vet to increase cleo's dosing every other day by 20% til we start to see if the large accidents she has towards end of day start to subside. she is now up to 0.9 twice daily on the liquid. I am so devastated that we keep having to increase especially for her, its so not fair to her! I am getting so antsy waiting for the 2nd ACTH test til next week.

[addy]

I am so devastated that we keep having to increase especially for her, its so not fair to her!

Maybe try to think of it that if she needs it, she needs it. I know it is hard.

I'm hoping we will all be doing the happy dance for Cleo when she has her stim next week.

Hang in there. You are doing a really good job.

Hugs,
Addy

[cleogirl]

addy, thx for the supportive words. actually my vet just told me she won't have the test for her unless the accidents start diminishing. I am starting to think there could be other things going on. I am wondering if we should get another opinion or ask for add'l testing.

[littleone1]

Hi,

In my opinion, I would get a second opinion. You might want to find an IMS that has experience in treating cushings. I haven't used liquid Trilo, but I know that with the capsules, everytime a dosage is increased, a stim test should be done 30 days later. It's very possible that Cleo could have a UTI, even though it didn't show up previously.

Terri

[cleogirl]

terri,

I already decided to take her to get another opinion about what's going on. the vet I am taking her to has experience but with atypical cushings. I will keep everyone updated when I find out what her diagnosis may be. I know that they recommended that cleo should be tested at the 14 day mark since she's been on the trilo, but my current vet had mentioned she didn't want to do another test until we got the accidents under control. honestly, not sure what the right direction is, but I needed to make a move as to what is currently going on. thx again

jodi

[littleone1]

You're welcome, Jodi. I'm glad you're getting a second opinion. I hope you'll get some positive answers as to what is going on.

Terri

[Harley PoMMom]

Some dogs treated with Trilostane/Vetoryl do fail to exhibit resolution of polyuria despite having ACTH stimulation test results
within the recommended range. I read about this here:Diagnosis & Treatment of Canine Cushing’s III. (http://wvc.omnibooksonline.com/data/papers/2009_V103.pdf)

[cleogirl]

yes I realize all dogs don't always respond to trilostane. that is why I think bringing her to another doctor for their diagnosis may help, at least I am hopeful

[addy]

We will all hope with you:)

Hugs,
Addy

[cleogirl]

hi all,

I just wanted to let all of you that have supported me thru this tough time, that the 2nd vet we brought Cleo to has confirmed that she DOES NOT have cushings. She did the ultrasound for both the pituary and adrenal glands and she is 100% certain it is not cushings. Meanwhile she has taken the usual blood and urine tests and will let us know tomorrow what else may be going on since there were so many indications that it was cushings. This vet even consulted with a cushings specialist here in Charlotte to ensure she had the correct info.
We are in the meantime, treating her for incontinence, a vaginal infection as well as pain meds for her arthritis.
thank you all again for all of your comments, help and your compassion

jodi

[lulusmom]

Jodi, you did a great thing by seeking out a second opinion. Cushing's is one of the most difficult canine conditions to diagnose so what you are going through is not all that uncommon. I'll be staying tuned for the results of the blood and urine tests.

Glynda

[cleogirl]

glynda,

thank you so very much. I will definitely keep all informed.

jodi

[addy]

Hi Jodi,

Don't you dare go anywhere, girl, until we know the results of the new tests. Gee, I was just going to pester you about putting a picture up of Cleo.:)

I'm glad Cleo does not have Cushings. Second opinions are so worthwhile. People get them all the time, why shouldn't our pups?

Hugs,
Addy

[littleone1]

I'm so glad you got a second opinion, Jodi. I will also be looking for an update.

[labblab]

hi all,

I just wanted to let all of you that have supported me thru this tough time, that the 2nd vet we brought Cleo to has confirmed that she DOES NOT have cushings. She did the ultrasound for both the pituary and adrenal glands and she is 100% certain it is not cushings.
Hi again, Jodi!

I know you have been through a lot already, and so I am sorry to plant any new seeds of doubt :o. But I am wondering how the new vet could absolutely eliminate the pituitary form of Cushing's based upon Cleo's abdominal ultrasound. It would have been Cleo's adrenal glands that the vet was imaging and not her pituitary gland. The pituitary gland is situated in a dog's head, and can only be seen via an MRI or CT scan of the head (both very expensive and specialized procedures that require general anesthesia).

It is true that a dog with adrenal Cushing's will typically exhibit abnormalities on an ultrasound image (one adrenal gland swollen with the presence of a tumor or mass, and the other gland often shrunken or atrophied). The majority of dogs with pituitary Cushing's will exhibit enlargement of both of their adrenal glands. But not infrequently, the adrenal glands of dogs with pituitary Cushing's will be of normal size -- in fact, up to 30% of the time. Here's a quote from an article by Dr. Claudia Reusch: (http://www.k9cushings.com/forum/showthread.php?t=230)


In the typical case of a dog with PDH the adrenal glands have a bilateral symmetrical appearance. They may be enlarged (increase in thickness), or normal-sized. Normal-sized adrenal glands are relatively frequent (about 30% of cases with PDH) and we assume that they are mostly seen in dogs with short term or mild disease. In dogs with PDH the shape of the adrenals is usually preserved, a plump appearance is sometimes seen. With regard to echogenicity adrenal glands in dogs with PDH are most often hypoechoic and homogenous. However, the parenchyma may also appear irregular, show focal areas of increased echogenicity or a nodular appearance.
Dr. Reusch does state that most dogs with pituitary Cushing's do exhibit abnormalities in the manner in which the ultrasound waves are reflected back ("hypoechoic"). But once again, it sounds as though this is not ALWAYS the case. And so, I am wondering how the vet was able to totally rule out pituitary Cushing's on the basis of Cleo's ultrasound exam. Just something that you might want to clarify when you talk to the vet about the additional lab results.

Marianne

[cleogirl]

Marianne,

I know that this new vet had spoken with the cushings specialist here in charlotte, and was told she could see if the pituitary was enlarged. even if the other tests would ensure more accurate results, the dr felt that the current results from all the test info I brought to her showed borderline cushings if at all.
I am taking all of this in and keeping it all in mind.
I just rec'd the test results from the dr and the blood came back normal whereas only the urine test came back with high protein. I don't recall if I had mentioned she does take meds for her thyroid twice daily. I am being very cautious at this point and appreciate everone's input. I will keep all informed as we go along.

jodi

[labblab]

Jodi, please do keep us updated, no matter how things turn out for Cleo. I am guessing that probably both of Cleo's adrenal glands were of normal size on the ultrasound, and that is the basis for the specialist being skeptical about Cushing's. And as you can tell from that quote that I gave you, that conclusion is correct for the majority of dogs who are tested. Just to clarify, it's not that I think it is likely that Cleo has pituitary Cushing's. But I'm just thinking that it cannot be absolutely ruled out on the basis of the ultrasound. If all of her other diagnostics turn out to be negative and further down the road she exhibits additional classic Cushing's symptoms, I'd think pituitary Cushing's could still be a consideraton.

Marianne

[Squirt's Mom]

Hi Jodi,

I am glad you got a good report on the ultrasound! That is a GREAT test for seeing so many organs and finding a myriad of problems. An U/S found a tumor on my Squirt's spleen early in our diagnostic phase which saved her life so I cannot emphasize how much I value ultrasounds. :)

It is my hope that Cleo missed the boat on Cushing's and that you have no further issues with her health. Keep an eye on the hypothyroidism as it can present much the same as Cushing's when the thyroid is not functioning correctly. If, heavens forbid, you do need a Cushing's group, know we are here....and it would tickle us pink if you would drop in from time to time and let us know how she is doing!

Hugs,
Leslie and the gang

[cleogirl]

leslie and all,

I will definitely keep you all up to date. its been such a great help to be able to find support and be able to vent to such a great group of people. I wish you and your wonderful dogs only the best today and always. as we continue this journey to figure out how to best treat cleo I will be forever thankful for all of you and your support.

jodi