My Roxy was just diagnosed after MANY years of vets dismissing my concerns

[JustaGirL]

Hi.
I have some questions about my recently diagnosed Roxy.

-Almost 10 years old
-Boxer, German Shepard mix
-135lbs (yeeesss...I do know this is very large. This however is not the biggest shes been sadly)

I always knew something was wrong with her around age 3 or 4. She always had a pot belly and prone to skin infections, ear infections and uti's since she was a puppy. She also developed dark skin on her bellt that would go away with antibiotics. I wasted A LOT of money at vet clinics that never listened. Took me 7 years to find one an hour away that did. Cheapest vet around that said they would fix a very bad ear hematoma for 300 dollars. I brought up my concerns with her weight (literally ever other vet I brought her to said I was over feeding her or someone in my home was feeding her scraps without my knowledge which was so irritating because I knew this wasn't true and if anything she looked/looks bloated in a sick way rather than obese. One vet told me the next time I saw her he wanted to see her ribs, meaning starve her. Thats ridiculous). This new vet I found suspected hypothyroidism. Test confirmed and meds helped for a short while. I saw a huge different and she lost a fair amount of weight. When symptoms came back and she ended up with a skin infection that turned staph within a week or so time (looked like her skin was burnt on her belly down to her privates and patches of hair were all over, looked like she had mange), we waited 2 weeks for strong antibiotics to work and scheduled her for a test 2 weeks ago. Positive for cushings. I must say, its bitter sweet but also some what a relief to know there is treatment we can try to at least see if her quality of life is possible because I KNEW something was wrong with my baby for years. She hardly moves around really anymore and breaks my heart because she's SUCHA good girl!

Anyways, the doctor started her out super low and I'm happy about that. 60mg Vetoryl pill once a morning for her size and she started Thursday. We are on day 6 now and I swear by day 4 all 3 of us in my household saw a difference and we all kept quiet thinking we were just wishful thinking until I noticed her get up from her bed not struggling at all! Normally she slides around until I jump up to help push her up but she's been doing it on her own. The loss of muscle strength in all 4 legs let alone her weight really has been a struggle so this made me so happy! The other thing we all noticed by day 4 was her neck looks much thinner, she doesn't feel so bloated, her fur feels much softer and not so brittle and her eyes look more lively. My boyfriend also noticed usually she whines a lot of excitment but it turns into anxious whinning whenever he bends down to pet and love on her but lately she just wags her tail with excitement instead of whinning. She doesn't smell musty
That was another big thing due to skin infections even when she was treated and bathing hardly helped. Her appetite is fine. She still has been drinking more than she should but I also have the wood stove on which probably contributes to all my dogs drinking more than usual. Her BM actually look better than they did before the medication.

I still have been keeping a close eye on her and told everyone where the emergency meds are with vet numbers if she ends up super sick due to any reaction but so far so good. Her next test is on the 13th and I can tell you I already know her weight has gone down.


My question:
- Do I always need to keep an eye out for possible side effects from vetoryl even after a week? A month? 6? I know if/when dosage is upped again of course but if she's tolerating it ok by day 6 so far, should I still be concerned?
- Also, the meds can work this fast right? No way are we all imagining this because shes just ran super fast like a lightening bolt chasing birds in my yard and I haven't seen her do that in at least a year or more!


Thank you!

[Joan2517]

Hi and welcome to you and Roxy! Definitely keep watching. The Cortisol can keep dropping for 30 days, and it can change over time. My Gable was very sensitive to Vetoryl (which I didn't realize until he crashed) and we had to keep lowering the dose. His weight was about 80lbs when we started him on 40mg, lowered it to 30, then 10 and he wound up at 5mg, weighing around 70something lbs, with me watching for signs all the time.

If you have the results from his blood work, could you post them, highs and lows with the reference ranges, and the results of the Cushing's tests that were done?

[Harley PoMMom]

Hi and welcome to you and Roxy!

Gosh I am so sorry for the reasons that brought you here but glad you found us and we will help in any way we can! As Joan mentioned, gathering all copies of test results and posting them here would be a great help to us in providing more meaning feedback. There are some things I am worried about: 1) that the testing for Cushing's was performed while your sweet girl had some skin issues, you see, any illness can create a false positive result on all Cushing's tests; 2) even though her starting dose is less than what is recommended by Dechra, studies have found that larger dogs are more sensitive to Trilostane (Trilostane is the active ingredient in Vetoryl) so they do suggest not starting a dose than no higher than 30 mg, here's a link to where you can find this information: https://www.k9cushings.com/forum/showthread.php?8925-GENERAL-GUIDELINES-for-Vetoryl-(trilostane)-Dosing-amp-Monitoring-with-ACTH-Stimulation

Did the vet inform you to give the Vetoryl dose with a meal, this is to aid absorption. And those monitoring ACTH stimulation tests have to be performed 4-6 hours after the Vetoryl is administered with a meal. A dog's cortisol can drop too low on any dose and at any time while on treatment so it is very important to keep a close eye on them for symptoms of too low cortisol such as vomiting, diarrhea, lethargy, or your girl simply not acting herself, if any one of these signs are noticed stopping the Vetoryl is required.

Please know we are here for you and precious Roxy!! And please do not hesitate to ask all the questions you want.

Hugs, Lori

[Squirt's Mom]

Hi and welcome to you and your sweet girl!

I second Lori's concerns about the accuracy of the diagnosis and the high starting dose. Please please keep a very close eye on her for ANY changes. The main signs of an overdose (which can be life threatening) are:

loose stools/diarrhea
nausea/vomiting
loss of appetite
lethargy

However this drug is sneaky and some dogs will start to tremble or just act as if they aren't really present. So ANY change you see could mean she is overdosed. When this happens the drug is stopped immediately and an ACTH needs to be done asap to check the cortisol AND the electrolytes need to be checked at the same time. In an overdose it's not the cortisol that is the real danger...it is another hormone called aldosterone. When the cortisol drops too low very often so does the aldosterone and this hormone regulates the eletrolytes. This hormone drop is what puts the pup's life at risk...and time is of the essence to get it supplemented via IV in the hospital. If the aldosterone is ok then simply stopping the Vetoryl/Trilostane is often enough. The dog will need to be off the meds for at least 7 days to give the adrenal glands a chance to recoup then the med is restarted at lower dose. When the cortisol goes too low there is the potential for adrenal gland damage...some temporary and some permanent causing a disease the opposite of Cushing's called Addison's disease. So you can see how very important the starting dose is and the impact a dose too high can have. Some larger dogs do just fine on the recommended starting dose but many do not so please watch carefully. We will be here to help in any way we can on your journey with Cushing's so never hesitate to reach out if you are concerned.

To answer your questions -
1) "Do I always need to keep an eye out for possible side effects from vetoryl even after a week? A month? 6? I know if/when dosage is upped again of course but if she's tolerating it ok by day 6 so far, should I still be concerned?"

The answer is a resounding YES. This drug is not stable meaning the cortisol can suddenly drop or rise even if the pup has been on treatment for years with no issue.

2) "Also, the meds can work this fast right? No way are we all imagining this because shes just ran super fast like a lightening bolt chasing birds in my yard and I haven't seen her do that in at least a year or more!"

The answer is again yes. In some dogs it goes to work very quickly. In others it can take months to see real improvement. As for the timing here, this is a good explanation from Dr. Edward Feldman from UC-Davis (the University of California, Davis) once the proper dosage of medication is found:

"Signs resolve in a typical order, with polyphagia (excessive hunger) being the first sign to improve in
most dogs. Owners also note that their dogs begin to be more active and pant less, as polydipsia
(excessive drinking) and polyuria (excessive peeing) resolve. All these can begin to resolve in just days to
a few weeks. Muscle strength and pot belly take longer to resolve and the various skin and hair coat issues
may require months. Why is all this important? It has been shown that as these signs resolve, there is
parallel improvement in hypertension, susceptibility to infection, proteinuria, and other concerns."

I'm glad you and Roxy found us and look forward to learning more as time passes. She sounds like a bundle of fun and I hope her days get brighter and brighter!

Hugs,
Leslie

[JustaGirL]

First and foremost...a picture of my sweet girl Roxy!
https://imgur.com/a/Vc41d0V


Hello again! I wanted to give an update on my Roxy. She is on day 19 of Vetoryl, 60mg once a day and I am ecstatic to tell all of you she is doing VERY well! Shes chasing birds, barking at absolutely nothing outside, running around my half acre of property outside being her old silly goofy self. I just let her bark and bark and bark because shes having a blast bringing me sticks and smelling whatever it is shes howling at. Her appetite is normal, drinking normal and even her urine looks really clear which is a big deal considering her chronic infections which includes ear, uti, yeast and skin. Ah! SO HAPPY! In 20 days, I have paid vet bills over 1800$ which for me brining in hardly 1k every month...it was hard but I did a large amount of online sales to help me with this and thankfully it worked out. It was the 2 cortisol tests that I wouldnt be able to afford every month so I'm so thankful its only costly in the beginning of diagnosis considering the vet I found is already low cost so does not accept carecredit. 2 tests costing 300$, 75$ vetoryl, $50 thyroid medication and another several 100$ for other fees...I am broke as a joke but I dont even care since shes doing well! Anything for my babygirl to have some kind of better quality of life at her age. I will literally go without eating if it means shes feeling better haha!
1 more ACTH test on the 11th of April and every 6 months after...I can absolutely do that! No bad side effects so far and she had her first round of ACTH test last Monday and her levels are stable! We saw noticable-although suddle, improvements by day 3 and a week into the meds it got better. I worry for how fast we saw improvements and the fact the levels dropped considerably fast so I truly do hope this isnt an early sign her levels will continue to drop to dangeous levels but I'm just so thankful they are stable and she didnt need a higher dose in meds considering shes on a very low dosage for her weight. The odd thing is, I could have swore she lost weight. It's strange because her collar was super loose when I brought her to the vet 10 days later for the second test, where I could fit both of my hands between her neck and the collar. I also at one point pulled her bed backwards with her on it and when I did, I used all my might as usual expecting to struggle because she's so heavy but I ended up flinging backwards and she also flung on her side in her bed. I was expecting it to be difficult to move her bed with her on it but she was lighter. But then, when we took her for the test last Monday, she some how gained 5 pounds?! So odd. Even the vet techs were confused and made me reweigh her 3 times. I know one vet tech was really amazed because he kept messing with her fur because last time he saw her 10 days prior, her fur was comping out in patches with skin. Not this time! I know they saw how much thinner she looks too so I don't understand the 5lb weight gain. The 2nd of March she weighed 135 and the 13th she weight 140. She really looks thinner. Her neck especially and I can now see her curved side shape plus her belly is definitely smaller. I am wondering if she wasn't so much obese but it could have been/still be swelling in her body. She always felt bloated. Painfully bloated. Id like to mention I gave her one 100mg gabapentine when I felt she needed it at night time, which was maybe 3-5 days a week for the last year and a half and I have only had to give her 3 total in the last 20 days! I believe why is due to them being rough with her at the last appointment which cause her feet and legs to hurt. I also noticed normally she has very dirty ears. I clean them regularly 2-3 times a week and no matter how much I keep up on it, usually the amount of dark gunky grossness is ridiculous but I haven't had to clean anything out since the 7th except a small amount of drainage! Clean as a whistle! She isn't crying or whinning, her anxiousness is nearly gone. Absolutely amazing. The dark spots on her belly is going away, her little peach fuzz hair has grown back on her belly, she had chronic skin infections that turned into a secondary staph infection super fast several times just in the past year (literally within days to a week which was a struggle because it takes weeks to get into the vet). Her belly had burn-like marks that I know was super painful and it's ALL GONE! Her hairless spots and patches of missing hair she constantly lost cameback, her fur is soft. She smelt horrible. A sour infection smell which was a bacterial skin infection and no matter how much I kept the dog bathed with expensive shampoos, it didnt matter. She smells good now! I felt bad because my house smelled terrible so can only imagine what it smelled like to her with a sensitive pup nose everywhere she went. I'm not finding endless amounts of dog hair everywhere. Her eyes look SO clear too! Her eyes looked so sick and now they look clear like shes enjoying life a little more day by day. I am so happy for her! I got nervous the day we picked her up after her recheck test last monday because she couldn't walk well and in pain limping. She immediately drank and drank and drank when she got home and she fell hard into her bed just exhausted. Could be they didnt give her any water for a near 7 hours at all which is irritating to me but also she may have been exhausted from anxiety after laying their all day in a cage. I hate dropping her off leaving her there. I worked as a vet tech for several years and know what happens in the back of these clinics is not how some employees act face to face up front when they are alone in the back with your pet so I worry the entire time for my animals when I have no choice but to leave them. I found out they were a little more than...aggressive...trying to do a nail trim. They charged me for it when it looked like they didnt do it at all and I didnt want to agrue. I have been in the room before when they do her nails and she isnt aggressive, shes just heavy and she panics when 3 people hold her down hard which for a dog with this much weight shouldnt been handle so hard especially because its hard on organs especially her lungs and they pretty much hog tie her pulling hard on her legs that look arthritic and painful at her joints. Like I said, I was a vet tech in my early 20s so understand it is necessary for certain dogs and owners are always great saying their dog wont bite but I am honest when I say it doesnt take 3 people to throw her down and lay on her hard to trim her nail--in fact if she is becoming anxious and kicking its because theres 2 humans laying all their weight on her, as shes on her side and another pulling her arms to trim her nails. It really isn't necessary at all. I was confused by their course of action the last time I watched from the doorway. They really don't need to be that rough considering they are very aggressive holding her down. I feel my boyfriend and I should just try to trim her nails ourselves for now on because I wasnt very happy the way she reacted the last time I picked her up and shes still stuggling to walk on her front legs since last monday. She isnt the normal healthy dog to be handling her in this fashion....I would have never done it this way to a dog in her health when I was a vet tech especially because she has much shorter front legs than the average dog should, it was something I noticed when I adopted her so may be a birth defect plus her trying to balance with such short legs considering her weight worries me she could break or dislocate them especially with cushings causing muscle issues so pulling her legs hard in directions they obviously do not go and laying on top of her is not the humane way. Now, my chihuahua is another story and definitely needs to be held down because I promise with all I have that old lady WILL bite ya so throw muzzle on her and hold her down LOL Roxy on the other hand is in pain, uncomfortable and its unnecessary. They look painful when she walks or even lays out so I was irritated they not only were rough with such a sick older dog but the fact it doesnt even look like they cut her nails at all. She's had a hard time moving around ever since we picked her up that day but slowly getting better.

So, I have one question this time I would like to ask those who have cared/caring for a dog with cushings disease that have also dealt with these cortisol tests...last Monday was her second ACHS test...The first test since taking vetoryl for about 12 days and I was wondering if the cortisol injections they shoot her with can cause a reaction? Not anything to worry about but can it cause some minor side effects? I mean, I know it's not dangerous but I know I have had steroid injections and other kinds of medical injections or medications that completely threw my entire body off for a few days. The first test she got to confirm cushings, she reacted the same way for a few days where she had diarrhea, tired and didn't move around much for 3 days or so and she was fine until the second test on the 13th and it's taken until yesterday for her to be her normal self again although still struggling with what I assume was people being rough with her. I'm assuming before she was given vetoryl her cortisol levels were super high so shooting her with even more cortisol and elevating it higher would cause some kind of constant adrenaline rush-like feeling and fast heart rate similar to anxiety and I assume now 2 weeks on the meds evening her levels to a good range that shooting her again with cortisol would cause her to feel bad again for a bit until it's out of her system. Am I wrong? We don't really know considering we cant ask our beloved fur babies how they feel but I really feel this is a thing since it happened twice now only after I dropped her off for 7+ hours and after this shot.

Thank you for those who responded to my first post! I didn't respond but I definitely read the comments!
I will continue to keep a watchful eye on her considering her coritsol levels could drop dangerously low at any period on these meds but I am SO HAPPY she's doing so great!

[Harley PoMMom]

I am so happy to read that Roxy is doing so well on treatment, that is great news!!!! And yes, you definitely want to keep a close eye on her cortisol dropping too low as cortisol can continue to drift downward during the first 30 days of treatment.

Some dogs are sensitive to the stimulating agent that is used in the ACTH test, which is usually Cortrosyn, and may have a reaction. When my Harley had his ACTH test I would have them bring him out to me after they injected the stim agent. We stayed at the vet's office until it was time for the second blood draw, they had a bench outside so we would go there and sit. I would also take water and his bowl with me to his vet visits.

Could you post Roxy's latest ACTH stimulation test results for us?

Thanks for keeping us updated and wishing you both continued success!

Hugs, Lori

[Joan2517]

Wonderful news! But do keep watching for signs. I used to sit with my Lena in the waiting room in between, she was fine with that, but I would go home with Gable and then go back two hours later. We live five minutes away, so it was easier.

So happy that Roxie is acting like her old self!

[Elizabeth513]

Your boxer mix caught my attention. I can relate to a lot! My boy has has not clinical symptoms since being diagnosed in 2020, but now those labs are creeping upwards. I am hopeful reading your story about the Vetoryl as we may be moving in that direction. Also, my boy struggles with the mobility issues too! Sending good vibes and continued health to your girl!

[Squirt's Mom]

Thanks for the update! I second what Lori said about the cortisol continuing to drop the first 30 days. I would definitely keep an eye on her for signs the cortisol has gone too low. If you see those signs it is time for IMMEDIATE action. Dogs can live a looong time with high cortisol but low cortisol (and low aldosterone which is involved often when the cortisol drops) can be quickly life-threatening. :eek: So don't take any chances. It is fine to stop the Vetoryl cold if you see any signs the cortisol is getting too low. So far it sounds like she is feeling much better for the most part and I'm so glad for that.

I don't understand why she has to stay 7 hours for the ACTH. This is at most a 2 hour test, usually it's 1 hour, so keeping her all day does nothing but stress her out which can impact the ACTH result. Also you do not want them to do anything else the day of the ACTH monitoring tests...no nail trims, no other testing, nada. Anything that can cause a dog to become nervous can impact the ACTH results. So on those days it is the ACTH ONLY. I would talk to them about letting you take her out of the clinic between draws. How the ACTH works - first they do a blood draw to get the baseline, or first, number then she is given the stimulant Lori mentioned; an hour wait then another blood draw that tells them how the body responded to the stimulant. This give them the second, or post, number and it is this number that matters. The first number rarely has any real value. So keeping her 7 hours is ridiculous and unnecessary.

Annnd I would most certainly never, ever let them trim her nails again. Find a groomer or another vet who is not as rough with her. Goodness....you are better than me! If I had seen a vet treating any of my babies that way I would have thrown them out of the exam room, gotten my baby and their records, and RUN out the door to find another vet. In other words, I might have gone to jail! :D

As for the weight gain....I'm wondering if they didn't mess up with her weight the time before and entered a lower weight than she actually showed? ie they wrote down 135 lbs but she actually weighed 145 lbs. Worth consideration....

It REALLY would help to see test results, especially the starting tests (ACTH and/or LDDS) and the most recent ACTH monitoring tests. If you are in the US they have to give you copies of test results if you ask. They may charge you for copies but they cannot refuse to give them to you. You paid for them, they are yours. ;)

Keep in touch and let us know how your sweet girl, and you, are doing!
Hugs,
Leslie