Recently diagnosed, looking for any insight from the community.

[LeahCC]

Hello, all. I have been lurking on this forum reading lots of stories and getting a lot of really useful information, but I wanted to get your perspective on our situation.

Our fur baby, Phoebe, was diagnosed with Cushing's almost three weeks ago. She is a 13 (just turned) year old female pit bull, and has had no significant health issues before.

Here’s a truncated timeline of the last three weeks:

2/9/18 - Blood test to diagnose (what turned out to be) Cushings symptoms, elevated ALP levels (I think.) Current weight 44lbs
2/12/18 - Ultrasound
2/16/18 - LDDS test confirms pituitary dependent Cushing's
2/22/18 - Begin 60mg Vetoryl once a day
3/9/18 - What we believe is calcinosis cutis appears and looks really bad, vet visit, she lost 4 lbs in about two weeks (symptoms were better but started coming back). Current weight 40lbs
3/12/18 - ACTH stem test
3/15/18 - ACTH stem test results:

Pre: 8.1 ug/dL
Post: 9.2 ug/dL


Here is the way more detailed account of the evolution of her illness to give you some context:

5/27/17 - Rapid weight gain (approx 8lbs over 6-7 months,) blood test to determine if hypothyroidism is the cause. (54ish lbs) Test results: included a ALP 446 u/l level.

Test was inconclusive for hypothyroidism, so we did an additional thyroid test which was close to higher levels, but not close enough to start medication. (I don’t remember the name and I don’t have access to the results at this time, but I probably could if it’s relevant.) Instructions were to lose weight, but the doctor warned me that we shouldn’t be surprised to have to address a thyroid issue the next time we had a checkup.

Thanksgiving 2017 - Small intestinal bacterial infection, diarrhea, treated with antibiotics, weight is normal at about 45ish lbs. I don’t think the illness is necessarily related, but it was the first confirmation that she was again at a normal weight.

2/9/18 (The last three weeks) - Over the past couple of months, we noticed muscle loss along the spine and dramatically increased thirst/urination (pu/pd), as well as intermittent trembling without obvious stimuli (no thunder, not cold.) She was going through about 2.5 gallons of water over two to three days and having accidents inside, which was highly unusual behavior for her. Had another blood test, the doctor said that her ALP levels were twice as high as the last blood test from May of last year. (Full disclosure, I’m pretty sure they were talking about ALP levels, but I’m not positive. I can get access to the blood test records if that’s more helpful.) Possible liver cancer or Cushings and ordered ultrasound for diagnosis.

Ultrasound the day after blood test results indicated that there are no problems with the liver, so Cushings is now the main suspect. Low Dose Dexamethasone Suppression Test (LDDS) conducted (8 hour test.) Doctor confirms that it is pituitary dependent Cushings and prescribed 60mg Vetoryl (Trilostane) once a day, and explained that we will need to do an ACTH stem test within 30 days if her symptoms improve, or sooner if we see any complications.

For the first week of treatment, we noticed improvement in symptoms: decreased thirst/urination, decreased trembling, and it even appeared that her back was filling in… or so I thought. During the second week, we noticed that her back had formed some thick layer of scaly skin that, when you ran your hand against the grain of her fur, sounded like shuffling a deck of cards. It seemed very sudden, but I can’t tell for sure because I wasn’t rubbing there all the time. I brought her in to the vet the next day (15 days after start of treatment, this past Friday the 9th) to examine her back, and report the resurgence of some of the symptoms: the excessive thirst/urination had decreased, but the trembling had come back and we discovered that she had lost four lbs in about two weeks. He gave us some medicated mousse to treat the back while he sent a sample to get tested, but theorized that it was calcinosis cutis. (I don’t have the name of the product but I can add it later when I get home.) We also scheduled her for an ACTH stem test for this past Monday. I have not spoken to the doctor yet but I have the results of her ACTH stem test (see above).

So I have a few questions... Can you help me understand these results? Is calcinosis cutis showing up suddenly after treatment begins a normal thing? Or is it possibly something else? Our doctor did mention that he can recommend two internists if we get to the point where we need more specialized care.. Should that be the next step? I feel like he’s done a really good job explaining each step, and he has been clear that he has no problem with us seeking a second opinion or asking questions.. I get the impression that he will be honest and let us know if he reaches the limit of his knowledge.

I recently read (in this forum) that it is better to give her the Vetoryl in the mornings because of the half life of the drug (as it wears off, the symptoms may appear while she is most active if given in the evenings.) We currently dose her in the evenings. What is the best way to transition to morning? Should I gradually back it up over several days, or can I just switch?

Also, should I look into some supplements? I currently just give her glucosamine/chondroitin twice a day, but I heard that some give milk thistle and I read some good reviews of Cushex. Of course, with any supplement, often the results are inconsistent, but I’m willing to try something if it won’t interact with her meds and it might help her.

I really appreciate any input and suggestions for questions I might bring up with the doctor. Sorry if this is a bit rambling.. The last few weeks have been hard on all of us, especially Phoebe. We just want her to feel better.

Thanks in advance,

Leah

[labblab]

Hello and welcome to you and Leah, and thanks so much for all this great information! There is lots for us to talk over, but I have only a few minutes available right now so I want to focus on a couple of things that seem really important. They relate to your current dosing schedule and Leah’s first monitoring ACTH results.

I recently read (in this forum) that it is better to give her the Vetoryl in the mornings because of the half life of the drug (as it wears off, the symptoms may appear while she is most active if given in the evenings.) We currently dose her in the evenings. What is the best way to transition to morning? Should I gradually back it up over several days, or can I just switch?

From a safety standpoint, the bigger issue associated with dosing only once in the evening is the fact that by the time the ACTH is administered the next day, cortisol levels may already have returned to baseline. For monitoring purposes and decisions about dosing changes, you need to know what the cortisol level is at its lowest — at the time that the medication is maximally effective in the bloodstream. According to Dechra, the maker of Vetoryl, the medication generally reaches maximal effectiveness by 1.5 hours after dosing. Over time, the medication’s effect lessens and it generally exits the body altogether after 12 hours. For this reason, they recommend that ACTH testing be performed 4-6 hours after giving the Vetoryl in the morning along with breakfast (it must be given alongside food to be metabolized efficiently).

So the point of this saga is that unless Leah’s monitoring ACTH test was performed in the evening after taking her Vetoryl with dinner, those results do not tell us the true effect of the medication. Presumably, her cortisol may be much lower during those initial hours after dosing. Both for the sake of safety and therapeutic effectiveness, that ACTH really needs to be redone under different circumstances. As far as changing her regimen, I’d simply hold off on giving her the Vetoryl one evening, and just start giving it along with breakfast the next morning.

Additionally, most clinicians and researchers now advise against starting any dog with a dose greater than 1 mg. per lb. of body weight. So 60 mg. daily is a heftier dose than we’d generally have recommended for Leah. However, it doesn’t sound as though her cortisol is likely being oversuppressed given her ACTH results. As I wrote above, I feel certain they’d have been lower had she been tested within the recommended timeframe. However, if they’ve rebounded back to that point by the next day, I doubt that the dose is actually too high for her, and that may be the right dose for her to continue on. But as I say, you need to know for certain where her cortisol falls at its lowest point.

Just have time for one more comment. With CC, it’s our understanding that the calcium deposits form under the skin and over time eventually push out on to the skin’s surface. So even though it seems coincidental that you’re only noticing the plagues now, right after starting treatment, they may have been forming under the skin for a while now. In order to ultimately heal, they have to first erupt. So you may actually be at the very beginning of that whole process.

OK, gotta run for now. But once again, welcome!
Marianne

[LeahCC]

Hi, Marianne! Thanks for the quick reply and I appreciate all the feedback! One quick note: I'm Leah and my dog's name is Phoebe. It's kinda weird reading about my cortisol levels though...

For her last ACTH test, we did let the doctor know that we are currently dosing her in the evening, so the day of the test, we just fed her a few hours earlier and gave her the pill after dinner like normal. (Usually she eats at about 6pm, instead she was fed and pilled at 2:30ish and then dropped off at the vet right after, then was picked up at 5:30 after the test.) I believe the vet is aware of the parameters of the testing procedure

So assuming the test was correctly administered and these results are accurate, could this be the appropriate dose? If so, does that mean that this may be as good as it gets for treating the symptoms? Or maybe we'll see an improvement in symptoms over time? I'd be interested to hear similar experiences so I can temper my expectations. Also, I'm not opposed to splitting up the dosage and giving her 30mg morning and evening. If the effects tend to lessen after 12 hours, I would rather her experience the maximum benefit for the greatest amount of time, especially if it makes her feel better.

As far as the CC goes, I plan to do some more research for treatment. At this time, it just looks like it's on her back so hopefully it will stay localized. It makes sense that it's an original symptom that has just now become apparent, rather than a new symptom that occurred after treatment began. (Which also has the added benefit of giving me some piece of mind that it should get better.)

Thanks again for the info. It really helps ease my concerns.

Leah

[LeahCC]

I just spoke with the doctor about her ACTH stem test and they said that her cortisol levels are dropping, and, since there is an improvement in symptoms, we'll give it another two weeks and perform another test to see where she is. We are taking her to have what they called a guided urinalysis to test for a UTI this afternoon. I mentioned that her thirst seems to have improved, but her urination is still fairly frequent. The doctor explained that Cushing's pets are more susceptible to infections in general, and she may have a UTI that slipped under the radar because of the normal Cushing's symptoms. Since the urine of Cushing's dogs is usually fairly dilute due to the thirst, they want to get a sterile sample from inside her bladder. I hope she hasn't had it long.. I hate to think she's been in pain for a while and we didn't notice because the symptoms were masked by the other Cushing's symptoms.

We're still waiting for the results of the skin test, but CC sounds like the culprit. The doctor did mention that her Vetoryl dosage is on the high side, so we definitely don't want to increase it until we're sure it's necessary. Considering that her levels are dropping, I doubt it will be.

I feel a lot better about her current status now. I think my husband was starting to prepare himself for the worst, but I'm not ready to give up just yet, and now I can convince him he doesn't necessarily need to be either.


Thanks again for all the info and the opportunity to vent!

Leah

[Squirt's Mom]

Hi Leah and welcome to you and Phoebe!

To help you, and your vet, understand the very specific protocol that applies to Vetoryl (Trilostane), here is an excerpt from the brochure included with the med and also found in our Helpful Resource section here under "Dechra's U.S. Product Insert***" - http://www.k9cushings.com/forum/show...-and-Resources

2. Action at 10-14 day evaluation (Table 1) After approximately 10-14 days at this dose, re-examine the dog and conduct a 4-6 hour post-dosing ACTH stimulation test and serum biochemical tests (with particular attention to electrolytes, and renal and hepatic function).

and...

4. Long term monitoring Once an optimum dose of VETORYL Capsules has been reached, re-examine the dog at 30 days, 90 days and every 3 months thereafter. At a minimum, this monitoring should include: • A thorough history and physical examination. • An ACTH stimulation test (conducted 4-6 hours after VETORYL Capsule administration)

and from the following site - http://www.animalhealthinternational...s-v6-15-15.pdf

After the administration of VETORYL Capsules with food, cortisol levels are most significantly
suppressed for 3 to 8 hours.
Therefore, in order to obtain results at the peak time of effect, the ACTH
stimulation test should be performed at 4-6 hours post-dosing. This will ensure you are assessing the
dog’s cortisol levels when they will be at their lowest, thus uncovering any unintended oversuppression of
the adrenal glands that would indicate the need to decrease the dose.
A positive response to the administration of VETORYL Capsules will manifest as an improvement in clinical
signs and post-ACTH serum cortisol concentration between 1.45 - 9.1 μg/dL (4-6 hours after dosing with
food).

So the ACTH needs to be performed in that frame - no earlier than 4 hours after dosing and no later than 6 hours after dosing WITH a MEAL.

One of our former members dealt with CC very successfully!; here is a link to Tobey's thread where you can read how her mom, Renee, handled her CC - http://www.k9cushings.com/forum/show...bey-has-passed

I'm glad you found us and look forward to learning more as time passes!
Hugs,
Leslie

[labblab]

Hi again, Leah, and I’m so sorry I confused your name!!! LOL, I was in such a rush to get a reply written that I obviously missed some important info...:-)))).

From what you’re describing, it does sound like your vet is on top of things. The decision to test for a UTI makes a lot of sense, and I’m very relieved to know that the ACTH testing was carried out per general protocol. Leslie’s right that Dechra recommends a timeframe of 4-6 hours, but other specialists prefer that the monitoring ACTHs be performed sooner after dosing. For instance, I believe the clinicians at UC Davis Vet School endorse a testing window of 2-3 hours after dosing, and it sounds like that’s the type of timeframe that your vet is using. So that’s fine as long as future testing is consistent with the same timeframe so the results will be directly comparable.

I think your current gameplan seems very reasonable. If Phoebe’s cortisol is still hanging up there in the 8-9 area after the next test — and if CC is confirmed — you may well consider a dosage increase at that time. Experience among our members treating CC is that skin improvement often doesn’t occur until post-ACTH levels drop down to 5 or below. But it’s wise to hold off on an increase for the time being. Definitely keep us updated, OK?

Marianne

[molly muffin]

Hello Leah and welcome to you and Phoebe.

Ultimately to get good control of cc we have noticed that a post ACTH result of 5.0ug and under is desired so that no new calcium deposits form. Since cortisol can drop on the same dose for up to 30 days, it makes sense that your vet wants to see where she ends up at on this dose and then increase as needed.

Frankly, your vet seems to be knowledgable about what he is dealing with and on top of the treatment plan, which is exactly what we like to see and is to be honest, quite wonderful to read. so Yay!

Don't get too discouraged about the cc. It looks awful, but hair and skin are always the longest to clear up and the hardest to get to clear up. The skin/hair cycle is just longer. But you want that post down under 5.0 so no new deposits form and then you need to make sure they are clean and dry so that they don't get infected. Its very easy to get say a bacterial infection in the sores.

Welcome again. I think you are on the right track and that is a good thing. If you do decide to go to mornings, I'd transitiion, either skip the night dose and just give the morning dose or give the night dose around noon and then give the morning dose, but I'd personally opt to skip the night dose and go right into the morning. Depends on what works better for you.

Some dogs also do well on a split dose of instead of one 60mg, two 30mg, one morning, one night.

[LeahCC]

Hi, all! Thanks for the info. Especially about the CC not seeing improvement until her cortisol levels drop below 5ug/dL. (I read that as nanograms per deci-liter.. is that right?) That better shapes my expectations so I can monitor her progress better.

I spoke with her doctor for a while last night after she had the guided culture taken, and we discussed her next ACTH stem test. For context, this clinic has several vets so I don't see the same person every time, but there are two main vets that run the show. The one I spoke with last night I think has a bigger role in treating their Cushing's patients than the others, so I'm going to discuss seeing her exclusively to avoid any confusion. She actually addressed the last test before I could bring it up; she said that there probably wasn't enough time elapsed to get an accurate result, so from this point forward, we would be performing the test over four hours, not two. We both agreed that the results probably aren't totally inaccurate, and can give us an idea where she is, but that from now on, the tests will be consistent and within recommended parameters.

We also talked about her calcinosis cutis and the UTI. She prescribed Phoebe cefpodoxime 100mg antibiotics (1x/day for 14 days) to battle any skin infection that may begin, and we should have the results of her urine culture and the skin test on Tuesday. For now, she suggested we continue administering the MiconaHex+Triz medicated mousse twice a day on the affected area. It's an antifungal, antibacterial, and barrier repair so she said it should help with her skin healing. I asked why we couldn't just have her take a different antibiotic to address both, as she's clearly in pain from what I believe is a UTI, and she explained that the different antibiotics address different parts of the body and there really isn't one that could address both. We might see some improvement from this antibiotic, but we'll most likely need to either start another or a different one after this round is complete. She mentioned that she often will prescribe Cerenia when treating a UTI because, although it is an anti-nausea medication, it acts as an anti-inflammatory for UTIs (I think she said for the bladder..) so it helps with pain. I called today to ask they prescribe me some for her because she's clearly in pain.. She sits and just trembles and she flinches when we touch her. It's upsetting.. I'm waiting to hear back from her on that. My only concern with giving her the Cerenia is that I don't want it to mask nausea that might be caused by her cortisol levels being too low. But I'm monitoring her bowl movements and everything is solid, so, combined with her last test results, I think we're ok on that front for now.

I'm thinking of creating a new thread focused on the CC issue. I started a google photo album that I want to use to document her treatment. I looked at Renee/Tobey's thread that Leslie recommend, but it's reeeeaaaalllly long and the subject matter is all over the place. There's some good information, but it's buried in threads that span several years. When I get some time, I may cull through it and pull the relevant parts out and add them to the CC thread. Do y'all think that would be useful? I'll be documenting it anyway, but it'd be helpful to have some additional feedback.

Thanks again!

Leah

[Squirt's Mom]

I'm thinking of creating a new thread focused on the CC issue.

If you do one of us will just merge it with this tread. We like to keep all info about each pup in one thread. That way it is easier to keep up with the history and keeps everyone from chasing down info. HOWEVER - if you would like to start a thread about calcinosis cutis in the Everything Else forum that would be fine. We have a thread there devoted to macroadenomas which is a rare complication with Cushing's (PDH form). You can find that forum here - http://www.k9cushings.com/forum/foru...verything-Else

Thanks!

[molly muffin]

I think it is ug/l (micrograms/litre) it is the standard used in the US.

I am so sorry to hear that she is in pain. That is of course very distressing, so I hope that they can give something to help with that and that the anitibiotics work quickly. Poor baby.