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/showthread.php?185-Trilostane-Vetoryl-Information-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.com/animalhealthinternational.com/media/Animal-Health-International/Training/Dechra/VETORYL-Technical-Brochure-SPreads-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/showthread.php?5908-My-girl-pug-(confirmed-Cushings-amp-confirmed-calcinosis-cutis)-Tobey-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. :D 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/forumdisplay.php?12-Everything-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.

[LeahCC]

So today we accidentally double dosed her and this morning she had 120mg of Vetoryl. I'm waiting for the vet to call me back about it.. Has anyone experienced this? Should I go back home and watch her? The office said I could bring her in for monitoring if I wanted. I should hear from the vet in the next hour or two. The vet tech that is there now said there shouldn't be any ill effects but that they'll run it by the vet when she gets in also.

[labblab]

I’m guessing there’s no need to worry unduly about one single double dose. You may want to skip tomorrow’s dose, however, to give her system additional time to return back to baseline.

Marianne

[LeahCC]

Thanks for the quick response. I've been worried all morning thinking the worst..

So Phoebe hasn't been doing that well over the weekend. We had people over on Saturday and usually she's super happy and excited while they're there. Her energy level was clearly way lower and, other than the normal begging for food, we didn't see a lot of her. She stayed in her bed in the other room a lot, which is unusual when there are guests. That night, she seemed pretty wiped out but was shaking a bit so I gave her a small dose of xanax (.125mg) so she could relax and sleep soundly. She's been shaking a lot lately.. Sometimes she just sits and stares at me and trembles, sometimes she's laying down and shaking.. She clearly doesn't feel good and I don't know what to do to fix it. She's been panting more, and I think the thirst has ramped up a bit; not quite to pre-Vetoryl levels but noticeably more. We should hear about the UTI tomorrow, and see if we need to change or add to her current antibiotic.

It just seems like nothing that we're doing is helping, that she's not getting better, and she feels bad all the time. I know it's only been a few weeks, and for me it seems like if we just push through this rough patch and dial in her meds, that she'll be ok. But I don't want to be that person who keeps the dog too long because I can't let go. And it's heartbreaking to see her in pain. Does that make sense? I think I just needed to vent a little.

Thanks for listening,

Leah

[Squirt's Mom]

If she were mine, I'd be going home at lunch to check on her. I'm a huge worry wort :):o and since she has not been feeling well to start with the double dose would concern me a great deal.

[LeahCC]

I went home during lunch to see how she was doing. She seemed no worse than normal, so I didn't take her to the vet. I saw no evidence of vomiting or diarrhea; just panting and trembling like a leaf. I brought her a plain hamburger and she gobbled it up as per the usual agreement.

I read here and there people using melatonin and milk thistle to help with Cushing's symptoms. Have y'all had any success with this? I have some melatonin at home that I take for sleep sometimes, and I can pick up milk thistle on my way home. I know that herbal supplements are very "your mileage may vary" but I'll try anything safe to make her feel better.

Thanks for the input,

Leah

[Squirt's Mom]

The combination of melatonin and lignans from either flax or Spruce is used to treat a form of Cushing's called Atypical in which the cortisol is normal but two or more of the intermediate, or sex, hormones are elevated. The melatonin used for this treatment is 3mg - plain, not time released, extended, etc...just plain ole melatonin. If using for calming you can start with 1mg and go up from there as needed...again plain, no additives. Milk Thistle is an herb used to support the liver. It can help in some dogs and unless they are allergic or have a sensitivity like my Squirt did it can't hurt. If the dog has seizures then melatonin is not recommended but otherwise it should be fine as well.

Tremors is one of the side effects listed for Vetoryl (Trilostane) so that may be what you are seeing. Hopefully she will adjust in time and that will settle but it doesn't in all dogs.

[LeahCC]

Oh so the tremors may just be a side effect of the Vetoryl and not necessarily indicate that she's in pain? Maybe we can look at lowering her dose if her next ACTH stem test comes back with good results. Trying to get in the Goldilocks zone with the Vetoryl.

I'm pretty sure she has the typical Cushing's so I can bypass the lignans-melatonin combo. I could use the melatonin for the calming properties and see if that gives her some relief. How did you know that Squirt had a sensitivity to milk thistle? Is there some kind of patch test maybe that I can do, or do I need to try a low dose to see if there's a reaction? What kind of reaction could I expect?

Thanks for the info :)

Keah

[labblab]

Tremors and "shivering" episodes are indeed complaints that we've heard before. My own Cushpup was one who suffered unexplained tremors before starting treatment, and for a period of time afterwards. There is still a lot that is unknown about Cushing's, and episodes like this seem to remain one of the mysteries. As Leslie says, tremoring has been listed as a possible side effect of trilostane, but my own dog started his tremoring before he was even placed on the medication.

Under the "Adverse Reactions" portion of Dechra's U.S. Product Insert for Vetoryl, "shaking/shivering" was reported in 10 dogs out of a total of 107 animals included in an American clinical trial. The big question, of course, is whether the shaking was truly caused by the drug or instead by something else. Since the shaking was observed in dogs during the time period they were taking the medication, it had to be listed as a possible side effect. But I don't think Dechra knows of a specific mechanism that would cause this effect.

As I say, my Cushpup definitely started tremoring prior to being treated with trilostane, so the drug couldn't have been the original cause. However, the tremoring did worsen after treatment was begun. So who knows exactly what was going on. For what it’s worth, here’s a related reply I posted to another member a while back.



Through the years, we have had other members who have worried over unexplained tremoring episodes. My own Cushpup, a Lab, suffered from intermittent involuntary tremoring episodes across his shoulder blades that made him look as though he was shivering. For him, the episodes happened most often when he was sitting down or at rest -- even when he was sleeping. Sometimes he would jerk himself awake, they were that severe. But just as is true for your boy, he would usually just stretch afterwards and never seemed to be in any particular pain or discomfort. The tremors began before he started trilostane treatment, worsened significantly when he first started the drug, and then ended up stopping entirely a few months down the road.

We never did figure out what caused them. Through the years, other members here have reported similar issues with their dogs under a variety of circumstances: some using trilostane, some using Lysodren (another medication), and also dogs not yet being treated at all. For this reason, it has been hard to point to a single "trigger." It is true that tremors are now listed as a possible side effect of trilostane. But I've always wondered whether such tremors more often just somehow relate to rapidly changing cortisol levels. But the good news is that they didn't really seem to bother my dog at all -- it was ME who was going crazy trying to figure them out!

So it may be the case that Phoebe will end up improving with a dosage decrease if the ACTH results warrant it. But conversely, she may end up doing better with an increase if her cortisol doesn’t drop down a bit more.

Marianne

[Squirt's Mom]

First, I used an alcohol tincture to give her the MT and she threw up. So I got a glycerite tincture and she threw that up. So I tried using the dried herb sprinkled n her food - she threw up. Last resort I tried a capsule form and she threw up. SO I gave up on MT and switched to an herb called Schisandra that also helps the liver and she did fine with that.

[jrepac]

melatonin, lignans and milk thistle are all recommended non-Rx options. But, I have to agree w/the others, shaking/trembling is a common side effect from treatment...I think it's tied to dropping cortisol levels....but it should pass. If it does not, speak to your vet.

[LeahCC]

Thanks for the insight into the trembling. I really hope it does pass, and soon. She has another ACTH stem test on the 30th so I will revisit the issue with the doctor at that time, if not sooner. That will be one full month on the Vetoryl so we can re-evaluate cortisol levels and dosage. I'm going to order some low dosage melatonin (the pills I have are too high) and some milk thistle and see if that helps. I've seen people refer to CBD oil also.. have y'all had success with it? I think I can order that as well. I'm pretty sure they sell it in head shops around here, also. Is there a difference between the formulation for pets vs for humans?

I'm bringing my cat in today because he's started coughing (of course.....) so I'm going to see if I can get the results of the skin and urine tests for Phoebe that they did last week. Apparently I need to just direct deposit my checks to the vet.............

[LeahCC]

Finally got the results from the most recent blood test (2/9/18) and the LDDS test (2/16/18). I'm having a hard time reading the blood test.. it's in a much different format than the last one, and I can't identify the liver readings.

LDDS:
PRE-DEX 5.2 ug/dL
4 POST-DEX 5.9 ug/dL
8 POST-DEX 7.6 ug/dL

Blood test:
https://drive.google.com/file/d/0B6-wiEv9q8HrZGw4WnJ4Q0NtaEhldDhMUE8wdFdISmd4NEdR/view?usp=sharing

[labblab]

Hi Leah, thanks so much for these lab results. Re: the missing liver values — what I’m seeing on your link is a single page that is reporting blood cell counts (“Hematology”) as opposed to a blood chemistry panel. It’s a chem panel that will include values for liver, kidneys, glucose, etc. So doublecheck and see if you can find another page that relates to blood chemistries.

I’m glad you’ve included the blood cell counts, though, because Phoebe’s abnormally low lymphocytes and eosinophils are characteristic of Cushing’s and add yet more confidence to the diagnosis. Abnormalities in those cells counts are described as being part of a “stress leukogram,” and here’s a link that discusses this in much more detail.

http://35.169.230.41/sites/default/files/attachments/Top%205%20Leukogram%20Patterns.pdf

Turning to the LDDS, it’s indeed consistent with Cushing’s. However, this pattern of results can occur with either the pituitary or adrenal form of the disease, and is actually more frequently associated with an adrenal tumor. I see that an ultrasound was performed at that same time, and I’m assuming that your vet felt confident in concluding that Phoebe has pituitary Cushing’s based on the ultrasound images. By that I mean he must not have seen any adrenal growths or masses. However, in looking back, I don’t see any specific comment about the appearance of the adrenal glands. Typically, you will see enlargement of both adrenals with pituitary Cushing’s. This is not always the case, but usually so. The adrenal glands can be very hard to visualize, though, and GP vets may not have the high resolution equipment needed to get a good view. But you may want to check back with your vet in order to find out exactly how the adrenals appeared on the ultrasound.

Marianne

[LeahCC]

Oh ok yea I see what you're talking about with the blood test. It looks like this is just one page of the test results. I emailed them back to ask for the full test.

So the order of events was blood test, then ultrasound, then LDDS test. The blood test with elevated liver enzymes indicated a problem either with the liver (possibly liver cancer) or Cushing's is what they explained to me when they did the test. The ultrasound was to determine if there was indeed a problem with the liver, and was performed by a visiting doctor who traveled with the ultrasound equipment (they do not have one on site.) She said that there did not seem to be any problem with the liver, and that the next step should be a Cushing's test. Then the LDDS test was performed, and my regular vet diagnosed pituitary-dependent Cushing's. I honestly don't remember if the ultrasound vet mentioned the size or state of the adrenal glands.. All I remember from that conversation is not liver cancer (yaay,) Cushing's (not yaay,) and that the adrenal glands are part of the renal system, thus the name ad-renal. (That's so helpful, right?) Should I start asking about the adrenal glands from the ultrasound? If it's actually adrenal-dependent Cushing's what will be different in treatment or symptoms? I think there's a surgery, potentially..?

Oh and turns out there's nothing wrong with the cat except maybe allergies. I think he was just jealous that Phoebe got to go to the vet every week, so he wanted to go too. Cause it's so fun. :/ But I did get some gabapentin for Phoebe for pain management for the calcinosis cutis on her back. It seemed to help last night, but it's possible that's in my head. I will attempt to objectively evaluate over the next few days.

Thanks!

Leah

[labblab]

That’s good news about your cat! I had to laugh when you wrote about just direct depositing your checks to the vet — I always ask my vet to point out the new piece of office furniture I’ve just bought him :-))).

Yes, I would ask your vet about that ultrasound, because the LDDS results do not definitively point to pituitary Cushing’s. The issue is that Phoebe did not respond to the dexamethasone injection by suppressing her cortisol production to below 50% of the baseline value, either at the 4- or 8-hour mark. Here’s a link that more thoroughly explains the interpretation of this test.

http://veterinarymedicine.dvm360.com/clinquiz-interpreting-low-dose-dexamethasone-suppression-test-results

If she does suffer from an adrenal tumor, surgery might be able to offer a total cure. We have had members who have undergone successful surgery of this type. It is risky and expensive, but it might be good to know whether it’s even an option. Also, there are different types of adrenal tumors, including ones that result in overproduction of hormones other than just cortisol. If that was true for Phoebe, it might account for her tremoring and lack of good response to the trilostane. For instance there are adrenal tumors known as pheochomocytomas that produce bursts of epinephrine resulting in symptoms such as these:


Clinical signs associated with pheochromo-cytoma are often vague and intermittent, and may mimic more common disorders such as hyperadrenocortisism, diabetes mellitus, hepatic or renal disease, or other neoplasms. Clinical signs frequently observed include weakness, collapse, lethargy, anorexia, vomiting, panting, weight loss, anxiety, restlessness, polyuria, polydipsia, diarrhea, abdominal distention, hind limb edema, epistaxis, seizures or acute blindness. The clinical signs are generally associated with catecholamine excess and systemic hypertension. Elevation of blood pressure induced by sudden release of catecholamines can precipitate acute congestive heart failure, pulmonary edema, myocardial infarction, ventricular fibrillation and cerebral hemorrhage. Nonfunctional tumors can also produce clinical signs by their space occupying nature.

Not that you need yet another thing to wonder about, but I did want to at least mention this possibility. I may be drawing you down a false rabbit hole, because your vet may have good reason (like the ultrasound) for ruling out an adrenal tumor of any sort. But he cannot have done so based on the LDDS alone.

Marianne

[LeahCC]

Ohhhh Marianne. The first thing I wanted to do when I read that last comment was go lay down in a dark room under the covers. But I roused myself from my little pity party and remembered that it's not about me, it's about Phoebe getting an accurate diagnosis so she can get helpful care.

Ok so I want to make sure I understand this so that I can ask the right questions when I talk to the doctor. (Unless otherwise noted, all units are ug/dL.) Her LDDS showed pre at 5.2, 4 hour at 5.9, and 8 hour at 7.6. The 8 hour being out of range (1-6) indicates that she is positive for Cushing's, but does not determine which type. If either her 4 or 8 hour values were 2.6 or below, we could conclude that she had pituitary dependent Cushing's. Since it was higher than 2.6 (50% of her initial value,) then it could be adrenal or pituitary. We would have to then either run a HDDS test or check the adrenal glands to see if there is potentially a tumor or if both are slightly enlarged. But since the adrenal glands are hard to visualize, the imaging equipment would need to be very good and the assessment very confident to diagnose pituitary dependent Cushing's. If this synopsis is correct, then it sounds like she needs some other test to definitively identify which type of Cushing's it is... I'd need some real clear imaging to convince me that he could tell what was going on with the adrenal glands. But now that she's on Vetoryl, can we even get an accurate test result at this point without taking her off for several days? And do her ACTH stem results after two weeks of Vetoryl help indicate either adrenal or pituitary Cushings?

[labblab]

I was really afraid I’d totally shake things up for you :-(, but there may be a very easy answer. The ultrasonographer may have been able to see that there were no adrenal abnormalities consistent with a tumor, and relayed that info to your vet. That is probably the most likely scenario that would’ve led him to conclude it’s PDH. But let me go ahead and answer your questions.



Ok so I want to make sure I understand this so that I can ask the right questions when I talk to the doctor. (Unless otherwise noted, all units are ug/dL.) Her LDDS showed pre at 5.2, 4 hour at 5.9, and 8 hour at 7.6. The 8 hour being out of range (1-6) indicates that she is positive for Cushing's, but does not determine which type. If either her 4 or 8 hour values were 2.6 or below, we could conclude that she had pituitary dependent Cushing's. Since it was higher than 2.6 (50% of her initial value,) then it could be adrenal or pituitary.
If you look back at the lab sheet, it was probably only the initial resting cortisol that had a normal range of 1-6. If you check, the normal range for the 8-hour value was probably below either 1.4 or 1.5. This is because a dog without Cushing’s will show significant suppression of cortisol after the dex injection. So with an 8 hour value of 7.6, Phoebe’s cortisol was elevated way beyond the normal range and that elevation is positive for Cushing’s, in general. You are then correct as far as the rest of your interpretation above.


We would have to then either run a HDDS test or check the adrenal glands to see if there is potentially a tumor or if both are slightly enlarged. But since the adrenal glands are hard to visualize, the imaging equipment would need to be very good and the assessment very confident to diagnose pituitary dependent Cushing's. If this synopsis is correct, then it sounds like she needs some other test to definitively identify which type of Cushing's it is... I'd need some real clear imaging to convince me that he could tell what was going on with the adrenal glands.

In that article I cited above, Dr. Bruyette says that he prefers an endogenous ACTH (different than an ACTH stimulation test) rather than an HDDS if people are going to do a blood test to distinguish between PDH and ADH. However, I don’t know whether or not that test would be skewed by Vetoryl. In terms of ultrasound results, Vetoryl itself will cause enlargement of both adrenal glands, so I don’t know how much difference you’d see between an untreated dog with PDH and a PDH dog after it’s been taking Vetoryl. However, the big determinant between PDH and ADH with the ultrasound is whether you see lumps or masses. In fact, with a functional adrenal tumor, what you see classically is one very enlarged adrenal gland containing a mass, and the other adrenal being very small and atrophied.

The first time around, the ultrasonographer may well have gotten a good enough view of the adrenals. And if there was nothing remarkable to be seen, the imaging would then have ruled out an adrenal tumor. In turn, if ADH was already ruled out, then your vet would only have been concerned with confirming the overall Cushing’s diagnosis diagnosis with the LDDS. And if so, I’ve put you through a lot of extra worry for nothing!

But I do encourage you to check with him. I don’t think Phoebe’s response to the Vetoryl now points to one type of Cushing’s over another, so you’ll be looking at either the ultrasound or a different blood test to make the determination.

[LeahCC]

Hello, just checking in. Phoebe hadn't made much progress over the last few weeks, except last night she seemed a bit more alert and shaking less. She talked a little bit last night which she does when she's being playful, and she even tried to jump up on the couch! :eek: I haven't seen her do that in a several months! She wasn't successful, but she felt good enough to make the attempt. At the risk of jinxing it, I wonder............. maybe she's getting better? She has an appointment on Friday for her next ACTH stem test, which will be performed properly this time, so we should get a much better idea where she's at. The only thing that has changed is that I started giving her 1mg of melatonin twice a day and 100mg milk thistle once a day, and time. Of course, it's about to start storming here which makes her a trembling basket case, so I won't be able to get a good assessment of how she's feeling tonight. But I'm hopeful!

I have not discussed the diagnosis with the vet yet to rule out adrenal Cushing's, but we are waiting on the results of the skin test to verify CC. If the results are in, he will call later and I will discuss it then. Otherwise, I will talk to them when I pick her up from her ACTH test.

Thanks for all the support :)

Leah

[LeahCC]

I spoke at length with my vet last night after he had talked to an internist about Phoebe's case. He said that the internist was not that concerned with the shorter time for the initial ACTH stem test, so the results are still meaningful. The internist recommended that we keep the dosage of Vetoryl the same, but split it to be taken twice a day. I'm going to pick up her 15mg capsules when they come in, either today or tomorrow. We're going to hold off on her next ACTH stem test for another two weeks to give the new dosing schedule some time to balance out. I kind of wanted to go ahead and test her tomorrow to see where she was, but she seems to be getting better in the last couple of days, so I would like to see how this unfolds over the next two weeks. He is concerned about the CC, and we discussed DMSO, but he said he's had some experience with it and he'd rather we not have to deal with it. We're going to stick with the MiconaHex+Triz mousse and shampoo and see how that goes. I've updated the google drive with some more pictures over the last couple of weeks, and it's getting worse. But I know that it won't arrest the degradation until her cortisol levels are under control so I'm still in treating the symptoms mode.

[Harley PoMMom]

The internist recommended that we keep the dosage of Vetoryl the same, but split it to be taken twice a day. I'm going to pick up her 15mg capsules when they come in, either today or tomorrow. We're going to hold off on her next ACTH stem test for another two weeks to give the new dosing schedule some time to balance out.

What is the dosage of Vetoryl that she is taking? I skimmed over your thread and found that she was getting 60 mg.

[LeahCC]

She gets 60mg. Sorry, I misspoke.. I'm supposed to be picking up 30mg capsules. (I am ready for the long weekend.)

And now I have $70 worth of Vetoryl I won't be using........ I'll just add it to the tab.

[LeahCC]

On a lighter note, here are a handful of pictures of Phoebe, mostly in repose as she is wont to do. (She's the best at sleeping.)

https://photos.app.goo.gl/mhAxrNtiP8vHdL0a2

[Squirt's Mom]

Oh she's adorable! My Bud sleeps with his arms, one or both, in the air a lot, too! LOL

[Harley PoMMom]

And now I have $70 worth of Vetoryl I won't be using........ I'll just add it to the tab.

One option could be to find a compounding pharmacy that would repackage those 60 mg Vetoryl capsules (which I am assuming is what you can't use now) and make them into smaller doses such as 10 mg or 20 mg.

[lulusmom]

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?)

Hi Leah and a belated welcome to you and Phoebe. To answer your question above, ug/dL is microgram/deciliter. Nanogram/deciliter would be ng/dL which is the unit we have seen in acth stimulation tests done in Europe. I usually have a lot to say but you and your vets seem to have a great handle on things and others have done a great job of providing you with excellent information. I would however, like to add my thanks to you for posting the CC thread in the Everything Else subforum. I see that as being a primary receptacle for all information relating to CC and an excellent source for members who are dealing with CC.

Glynda

[LeahCC]

Phoebe had a rough night last night. She was up pacing and panting twice last night (at least that I could hear and woke me up.) She went to the bathroom one time but not the other, so I don't know if that was related. This is a new thing as far as I can tell. The random panting for no apparent reason has been occurring since she started the Vetoryl, but the night pacing is new. I gave her a gabapentin to try to calm her down a little the first time I woke up, but two hours later she was up pacing and panting again. She's also been wobbly and just seems a bit out of it, which we were attributing to the gabapentin, so we're easing off giving it to her three times a day to see if that improves. The CC is showing no sign of stopping.

I'm picking up her split dose of Vetoryl this afternoon to see if splitting the dose helps with the clinical symptoms. If it does, I may look into seeing if I can get a compounding pharmacy to split the larger dose pills I have. The plan is to have her on 60mg split up twice a day (30mg x2) and do another ACTH stem test on the 13th to see what her levels are. Maybe splitting the dose will make a difference.. She's just so miserable all the time.

Let me know if you have any thoughts on the new symptoms.

Thanks,

Leah

[labblab]

I know you had initially planned to do a monitoring ACTH test on the 30th, but then the internist suggested you hold off since, at that time, Leah was doing well. She is not doing well now, though, and I’d want to proceed with an ACTH instead of waiting another two weeks. Wobbliness and seeming “out of it” could indeed be due to the gabapentin, but it could instead be due to trilostane overdosing and a cortisol level that’s dropping too low. So if she persists or worsens with these ill effects, I think a check of her cortisol level is needed.

Marianne

[Squirt's Mom]

I would want an ACTH asap just to ease my mind that the cortisol was not too low. Low cortisol is very dangerous and cannot be put on the back burner, unlike high cortisol which can take years to do any real damage. So the ACTH would be my first, and immediate, step - immediate as in today. Another thought is doggy Alzheimer's, dementia. My Squirt ended up with this in her last year and experienced what humans with this condition do called "sundowners" - meaning around dark they start pacing, become restless and confused. She would pace and pace and pace until she was exhausted but still couldn't rest well. So I would talk to Phoebe's vet about this possibility at the same time the ACTH was being done. There is no test for Alzheimer's in dogs that I am aware of - it was diagnosed in Squirt based on age and behaviors.

Hugs
Leslie

[LeahCC]

I talked with my vet again and he kinda talked me down from the ledge. He said that considering her cortisol levels the last time she had an ACTH stem test and her current symptoms, another ACTH test at this time would not really benefit her, especially considering that it's immediately followed with a change to her dosing schedule. The panting and pacing in the middle of the night could be because we would give her the Vetoryl super early in the morning (about 4am) and it's wearing off at about that time, which makes sense. Since we switched to 30mg 2x a day a couple of days ago, she has not woken me up panting and pacing, just to pee and drink some water and then go back to sleep. Also, we discontinued her gabapentin for a while and she hasn't been wobbly or stumbling. As a matter of fact, she's been getting herself up on the couch without help apparently. It's a struggle, but she's able to do it, which means she feels good enough to exert herself find a comfortable place to be, rather than just laying down and shaking until she falls asleep.

He offered to do some blood work to rule out any immediate concerns, but I think it was more a compromise than something he thought was necessary. We decided to wait on the blood test and ACTH stem until two weeks after the change in dosing unless her symptoms got worse. Over the last couple of days, she seems to be better overall, so I'm really hoping the change in dosage and scaling back on pain meds is helping.

[LeahCC]

I just realized I've been writing ACTH stem test, not ACTH stim test.

Duh

[Squirt's Mom]

I am glad to hear she is doing better and that her vet was able to help calm you by explaining things in a clear manner. I hope she continues in this trend and that before long you are seeing more and more of your old girl.

Hugs,
Leslie

[LeahCC]

We're still kind of in a holding pattern but I have a quick question.. Has anyone noticed an issue with poop urgency? There have been a few times where Phoebe is pacing and panting and then has to poop suddenly. This is after being outside a lot just moments before. Urgent to where she poops inside if she doesn't go out immediately. It's very unlike her to poop indoors. Her poop is solid.

I think I'm going to take her off the milk thistle and see if that helps..

[molly muffin]

Oh Phoebe is a beauty! You can just right ACTH, we know what you are talking about. :)

We just had a member, whose dog was having soft stools who found that the food was contributing to the issue. So that is a thought too, perhaps in conjunction with medication it isn't working for her now? Just a thought.
Are you going to get an ACTH done?

Poor girl, I'm sure she feels horrible to lose bowel control. Removing milk thistle, might help, and you'd at least see if that is what caused the loose bowels.

[LeahCC]

I have her next ACTH stim test scheduled for next week. Her vet wanted to wait a full two weeks after changing her dosing to twice a day to see what her levels were at. The stool isn't loose (otherwise I'd be worried about her cortisol levels being too low), it's just that it's inside. It's been less frequent over the last couple of days so I'm keeping her off the milk thistle for now. I just didn't know if it was a known thing.

Thanks for the feedback :)

[molly muffin]

Has removing the milk thistle made a difference in her having accidents inside the house (stool)?

[LeahCC]

It has not. Although her thirst has subsided, she still frequently has accidents inside of both types. I'm bringing her in tomorrow for her next round of ACTH stim test and a blood panel to see where she's at. It's been two weeks since she started on the split dose and I'm not thrilled with the results. When she's not shaking, she's panting. She has been getting up on the couch by herself with some frequency so that's promising. But I can see the CC continuing to spread down her back. We'll see where we are this week when the test results come back.

[LeahCC]

So Phoebe went to the vet this morning to do her latest ACTH stim test and my husband picked her. He spoke with the doctor so this is all second hand info from what he can remember. He prescribed her an antibiotic for 10 days because he found bacteria in her urine. This one is supposed to be good for bladder and hair so it'll help combat any kind of infection her skin may be fighting while it treats what he found in her urine. It may help with the frequent urination she's been experiencing. He said that the skin that is bare is looking better, but the skin that has hair where the hair is coming out still looks bad. It appears that the skin where the calcinosis first appeared seems to be healing so the reset of the skin should follow suit. He spoke with two internal medicine specialists and will be sending her results to one of them for treatment recommendations. He said the internist sees stubborn cases like this all the time and has treatment options. The internist had mentioned that splitting the dose gives the best results this treatment path (trilostane) can give, and did not recommend going higher... My husband said that the doctor mentioned some other drug treatment that's more about the suppression of the actual pituitary gland but he's not sure.. I think he may have been talking about lysodren but he doesn't think so. And she doesn't have abnormal Cushing's so I don't think it was the herbal treatment.

We should get the results in a few days and he'll confer with the internist to see what our next steps are. The CC is continuing down her back along her sides so clearly her cortisol levels are still too high, but if she doesn't want to increase the dosage then I don't know what else we would do. She may want to try lysodren to see if she gets a better reaction. I wouldn't be thrilled since it's a more dangerous drug, but this isn't working. She is still constantly either panting or shaking and miserable until she's fast asleep, and even then her shoulders twitch usually.

Hanging in there..

[Harley PoMMom]

One thing to remember is that CC takes a long time to improve so patience is a must (I know how hard that can be as I am not a patient person). An UTI will make a dog drink/urinate more and may even cause some panting so hopefully those antibiotics will help soon, if not, I would ask to have the urine cultured so that the exact bacteria can be known and than the correct antibiotic will be prescribed.

You're doing a wonderful job and thanks so much for the pictures!

Lori

[LeahCC]

Thanks for the comments, Harley :)

I just spoke with her vet and the results of her last ACTH stim test are:

Pre: 2.1 (Range 2-6)
Post: 5.3 (Range 6-18)

He is going to run these numbers by the internal medicine specialist who has been working on her case with him, but he's pleased with the numbers at this time. He says that the CC that I see getting worse may be due to the lag between controlling her cortisol numbers and how long CC takes to rupture and begin to heal, which makes sense. He said that there is for sure new hair growth in the oldest patches that have healed, and that her skin looks good so far, so we're going to stay the course with this treatment. I speculated that the shaking could be from the UTI, which he agreed may be the case. He said that because these are the best her numbers have looked so far, he would like to just slow down and let the antibiotics handle the UTI and see how she does over the next month. He doesn't want to throw a bunch of stuff at her and try to treat different things all at once because it's too difficult to determine what is helping and what is not.

I think we're in a good place with her numbers, and I'm hoping that healing the UTI will improve her overall disposition. She is routinely getting on and off the couch, so that's good. We put our bed on the floor so that she could access it again, and it turns out she's a big fan of bed on the floor... Who knew?? (We knew)

[molly muffin]

CC is calcium deposits under the skin that have to push up and out. That is what causes the sores. As long as cortisol is too high, calcium deposits can form, once there they have to push up and out, so the ones that are healing now, are ones that already have pushed out, the newer areas is where the calicium was formed already. What you want is no new calicum deposits to form that have to come out. Often you for cc to not form any new deposits you want the post number under 5.0, so you are close. That is just what we see on here and every dog is different of course.

It is not unusual for cc treatment to take 6 months or so for skin to clear and that is with no new deposits forming. This due to how long it takes to go through hair and skin cycles.

The UTI could definitely be a factor in the urination frequency, so that should clear up with the antibiotics. (cross fingers0

[LeahCC]

This is a crosspost from the CC thread:

Over the past few days, Phoebe had started whining and pacing for seemingly no reason. She was not favoring any body part or doing anything physically to indicate what the source of the discomfort was. We had been treating her for a confirmed UTI with antibiotics for 10 days, and she seemed to be better for a day about 6 days in, but then started the whining. Also, her back has been very sensitive and, when she is rubbed or scratched there, she rolls into it dramatically and kind of rolls into the floor. (Which proves challenging around any corners as she throws all of her weight in one direction.) I spoke with the doctor and he prescribed some allergy medicine (Apoquel 8mg twice a day) and another antibiotic (Enroflaxacin 68mg) to treat the UTI in case the previous round did not knock it out and that's what is causing the pain.

After starting her on the new antibiotic and the allergy meds, she isn't whining so I think maybe the allergy meds are helping. It's also possible that the CC was erupting through her skin on her lower back by her tail over several days and has finally finished. That area is sensitive for her, and since she's reacting so dramatically to being touched there, I think the CC is making her back really uncomfortable. I'm hoping the worst is over and that's the end of the eruptions. We continue to bathe her frequently with the MiconaHex+Triz shampoo and treat her back with the same spray. I may start looking at some kind of moisturizer to treat her skin as it heals. It seems kind of dry.

Updated photos in her album:
https://photos.app.goo.gl/RilEfECYugjNWcXR2

[LeahCC]

Oh could someone post the link to the information about the alternative to the ACTH stim test? I would like to forward it to my vet and see if he's willing to explore the option.

Thanks in advance!

[lulusmom]

Here ya go. This page from the Dechra website has videos of Professor Ian Ramsey who explains this new monitoring tool in detail. This will make it very easy for your vet to follow the protocol. By the way, this monitoring protocol has been used in the UK for over two years as well in some European countries. Dechra will eventually publish this information to vets in the U.S. however, their hands are tied until the FDA approves this change. That doesn't mean U.S. vets can't start utilizing it now. Hopefully your vet will be open to working with you on this. It's an exciting development that will make treating canine cushing's a lot less expensive. That could mean the difference for a dog whose owner simply cannot afford the cost of acth stimulation tests.

https://www.dechra.co.uk/therapy-areas/companion-animal/endocrinology/canine-hyperadrenocorticism/vetoryl-monitoring-1

[LeahCC]

So I'm not sure what is going on with Phoebe, but she's still uncomfortable. She whines occasionally and I can't find the source of the problem. The likely candidate is her back and the ongoing CC eruptions, but I don't really know what to do about that if that's the cause. She finished her allergy meds and antibiotic yesterday, and this morning she was still pacing and emitting a low whine intermittently. The mornings and afternoons seem to be the worst for her. Often it's right about the time she gets her morning and evening dinner with meds. A bit after, she goes to sleep and seems content (except for the shoulder twitching, which has been constant for months.)

I give her melatonin and CBD oil, and I'm not really sure if that's helping. She also has gabapentin that I sometimes give her, but it makes her kind of loopy so I try not to unless he's really not doing well. Does any of this sound familiar? The panting and pacing and whining.. She even sometimes runs out to the car, which I've neeeeever seen her do. Car rides generally end up at the vet so she's usually not keen on them, and certainly doesn't ever *lead* me to the car.

If it is the CC, is there anything I can do? Any other treatment we can explore to speed up the process or help manage the pain? I know DMSO is often used as a treatment, and my vet mentioned it, but at the time he said it was really harsh and tries to put off suggesting it until it's necessary (which it may be, now.) Is it something totally different and I should bring her in for an exam? When we did her last ACTH stim test, her vet said that he'd like to see her in a month to check up on her. It's been three weeks so I'm thinking maybe I'll take her on Friday and let him examine her CC to see what specific state it's in. I know there is a particular antibiotic that helps with CC (according to a study) but she *just* finished a second round of antibiotics. I don't know if a third round back to back like this is ok for her. Maybe I'm just being impatient with the CC, but she never whines so she's in some kind of pain. Would like to make her more comfortable if at all possible.

Let me know if you have any suggestions..



Thank you,

Leah

[Harley PoMMom]

I'd definitely try tramadol for the pain.

[LeahCC]

(Some of this is cross posted from the CC thread)

The spells of distress (panting, whining, pacing) continues, occurring about every two or three hours that I can tell. I recently set up a camera in our living room to see how often they're occurring when she's home alone. Lately she has been getting really amped up during these spells sometimes, and starts galloping through the house and jumps to land on the couch, but misses and falls. It's pretty frightening because we have wood floors and she is scrambling. Then she'll included jumping up and down from the couch in her pacing.

I brought Phoebe to the vet Friday 5/11/18 and explained what was going on. My perception was that the whining and pacing seemed to coincide with meal time, so he decided to try treating a possible ulcer in her stomach in case her anticipation of food was exacerbating the problem and causing her discomfort. I had her on Pepcid 10mg 2x a day and Nexium 20mg 1x a day for about a week. I did not notice any real improvement, and last Saturday she got diarrhea, so I panicked and decided to discontinue the meds. (I also noticed that there was no real time that the spells occurred, and that was my perception because that was when we were home.) Thankfully, it was just one bout, so her bowels seem to be fine now, and in the mean time I ordered some DMSO with aloe vera and Jax n Daisy lotion for her back. I've been putting the DMSO on every day or so, and the lotion when she seems to be irritated (panting, whining) and I think it's helping. Her back is looking really good and, save a couple of late patches on either side of her spine, most of the calcinosis seems to be erupted and gone. I'm hoping that the residual patches are what is causing the irritation (and her sensitivity in those areas leads me to believe that is the case), and that the DMSO and lotion will continue to help her as those heal. We noticed a small patch possibly forming on her forehead, just above her eyes, so I'll be keeping an eye on that.

Her skin seems to be healing and there are only a few patches of active eruption currently, but her distress seems to be unchanged if not worse. I'm wondering if maybe she's having some hip/joint problems. She kind of struggles to get up when she's been sleeping, although she's up and down from the couch with no problem. I know it's common for the arthritis that has been hidden by high cortisol levels to show up after levels are normalized, so I'm going to resume her glucosmine/chondroitin supplements and see if that helps. I have a call in with her vet to check in and discuss what else might be a problem. I'm also going to get some pain meds for her. I don't really like treating a symptom without knowing the cause, but it's really hard to watch her when she's having a one of these spells and I hate that she's in pain. We were treating with melatonin, but as the distress increases, I've been giving her a low dose of xanax to treat, which calms her down and she naps for a while.

Do y'all have any other ideas what might be causing her this distress? It's been going on so long and doesn't seem to be getting any better. It's so frustrating to see her in pain and not know how to help.

Thanks for listening.

Leah

[LeahCC]

Also, Allivet just bumped up the cost of Vetoryl by $20 for two boxes of the 30mg. Could someone point me to the thread about buying cushings meds online? I couldn't find a sticky or forum post for it.

[labblab]

Hi Leah,

Gosh, I’m so sorry Phoebe is continuing to have these problems. First, I think I can give you an easy answer to your question about internet veterinary pharmacies. I think this is the recent discussion you are referring to (scroll down from the top of the page, and the discussion begins around mid-page).

http://www.k9cushings.com/forum/showthread.php?8932-Emma-New-Member-Post/page2

The much harder question is what may be triggering these attacks. Has your vet consulted with the internist about this specific issue? I’d be interested in the internist’s take on possible causes. This may be quite far-fetched, but I keep returning to the possibility that Phoebe may be suffering from an adrenal tumor (pheochromocytoma) that is periodically releasing bursts of hormones such as epinephrine (adrenaline) in addition to cortisol. Bursts such as this could definitely account for intermittent periods of anxiety/pacing/restlessness, and I don’t believe that the Vetoryl would have any benefit in terms of decreasing epinephrine production. If you feel pretty confident that it’s pain that’s causing her discomfort, then this would not be the answer. But if it’s not pain, then this might be a consideration if you’ve still not ruled out an adrenal tumor as the cause of her Cushing’s.

I’m wondering whether another alternative to frank pain might be some type of neurological disruption. One of my nonCushpup labs suffered from grand mal seizures of unknown origin, and the full-blown seizures were preceded by at least a couple of minutes of fairly frantic pacing and wandering. She actually bumped into walls and furniture as she flailed her way around the room prior to falling over on her side. Fortunately for us, she responded very favorably to anti-seizure medication and those episodes were totally halted.

Once again, if you’re pretty confident that pain is the stimulus, then neither of these notions would have any “legs” at all. And the internist may dismiss them altogether, anyway. But I just wanted to throw them out for your consideration...

Marianne

[LeahCC]

I spoke at length with the vet night before last and he suggested we put her on a mood stabilizer since it seems to be mostly anxiety related. He remembered that she has a bad reaction to storms and fireworks, and her behavior is exactly like there is a huge storm every two or three hours. Also, she reacts better to the Xanax (anti-anxiety) than gabapentin (pain relief); she'll continue to pace and pant on the gabapentin, but she lays right down and is calm with the Xanax. It may be that there is some pain that is causing the anxiety and it just keeps building until she finally calms down. He prescribed fluoxetine 20mg (Prozac) once a day, and we're going to give it a month and see how it goes. Her back is close to being completely healed, so if that was causing the pain, then it will be done soon.

As far as the adrenal tumor, how difficult is it to diagnose? And how urgent is it to diagnose and act on it? I'd like to give the Prozac a shot before going down a potentially expensive and invasive rabbit hole. It takes a week or two to start seeing improvement, and if things continue as they are, I will ask if we should talk to the internist or maybe have some blood work or other tests done.

[labblab]

Probably the best way to investigate the presence of an adrenal tumor is through an abdominal ultrasound, which you’ve already had done. However, I still have the question now that I had back in March.


Turning to the LDDS, it’s indeed consistent with Cushing’s. However, this pattern of results can occur with either the pituitary or adrenal form of the disease, and is actually more frequently associated with an adrenal tumor. I see that an ultrasound was performed at that same time, and I’m assuming that your vet felt confident in concluding that Phoebe has pituitary Cushing’s based on the ultrasound images. By that I mean he must not have seen any adrenal growths or masses. However, in looking back, I don’t see any specific comment about the appearance of the adrenal glands. Typically, you will see enlargement of both adrenals with pituitary Cushing’s. This is not always the case, but usually so. The adrenal glands can be very hard to visualize, though, and GP vets may not have the high resolution equipment needed to get a good view. But you may want to check back with your vet in order to find out exactly how the adrenals appeared on the ultrasound.

Since your vet has never mentioned anything more to you about a possible adrenal tumor, I’m still assuming he was able to rule that out via the original ultrasound. But just for the heck of it, I’d specifically clarify with him exactly what he did see in terms of any adrenal abnormalities. If you do so, probably we can lay the whole issue to rest pretty easily.

Marianne

[LeahCC]

So she's on day 8 of the Prozac and I'm concerned about her behavior. I don't know if these are normal side effects or not. She's pretty lethargic and her appetite is very reduced. Today she didn't eat her breakfast and so I made her an egg. She ate maybe half of it very slowly. Lately she seems confused by what to do with her water. She puts her face really close to it and just sways a little, but doesn't drink. She isn't vomiting and her stool is solid so I don't think it's Addison's, but I don't know what this is. The water behavior has been going on prior to the Prozac, but she was drinking eventually. I read that the loss of appetite and lethergy is a common side effect of the Prozac, I'm just not sure if it's severe or I'm just overreacting. Does anyone have experience with Prozac for dogs? I'm going to call our vet on Monday and talk with him about her behavior. Is it ok if she takes her vetoryl without a full stomach? I'm going to try inticing her with some meat later. Maybe try cooking some hamburger and rice later and see if she'll eat some of that. I read that the loss of appetite shouldn't last more than a few days as she adjusts to the medicine.

Also, I think she may be suffering with hip dysplasia, which is common in pitts. I've started her on some glucosamine condroitin chews. Her gait while she walks is odd, and her back legs slide while she's standing on tile or hardwood, which is the entire house. I've been putting pee pads around so she can get some purchase while standing by her bowl or next to the couch for when she jumps up and down from the couch.

[labblab]

Dear Leah,

Based on this additional information, I'm afraid that I'm now most worried that Phoebe's problems may be neurological in nature. Specifically, my concern is that even though pituitary tumors are most often benign, they can still enlarge over time with the result that they place pressure on other areas of the brain. Referred to as "pituitary macrotumors," these enlarging tumors can result in the types of behavioral changes that you are now describing: loss of appetite and ability to drink, seemingly mindless pacing and anxiety, loss of coordination, confusion, lethargy, and probably also headache pain. I'm sadly quite familiar with this issue because my husband and I believe that this was what caused the demise of our own Cushpup Lab. The only way an enlarging tumor can be diagnosed with certainty is through imaging of the head, either CT or MRI. This imaging can be quite expensive, and therefore it is not performed routinely. We did not opt for the imaging in the case of our own dog because we (and our internist) felt so certain that this was the problem, and we knew we would not pursue treatment, regardless. At that time, treatment involved conventional radiation consisting of a dozen sessions under general anesthesia over the period of a month. Just as is the case with human brain treatment options, there are now more technologically advanced veterinary options such as "cyberknives," etc., that require only a few treatments over the course of a few days rather than a few weeks. But I am jumping way ahead of myself by discussing treatment.

The first issue, of course, remains a diagnosis. But as I say, suddenly many of the pieces of Phoebe's puzzle are forming a pattern with which I am familiar. Your description of Phoebe's behavior at the water bowl is particularly striking to me, because an inability to drink became a real crisis point for us. Our dog, Barkis, had suffered from a dwindling appetite over a period of a month or two until he reached the point where he wouldn't eat at all. But his behavior at the water bowl was the hardest part to watch because it was clear he was thirsty but it seemed as though he had forgotten what he needed to do in order to actually drink. He would walk over to his bowl, dip his head down and make lapping movements with his tongue, but without ever actually bending over far enough to touch the water. It broke my heart to see that. He could make it going without food for awhile, but we knew he had to have water to survive so we ended up giving him Sub-Q fluid injections to buy us some time.

I feel as though I am always the bearer of bad tidings for you. You must be at the point where you hate to see that I've even posted a reply on your thread. I apologize dearly for that. But I know you are so worried about Phoebe, and sometimes knowing what is actually wrong at least brings some certainty as to the path forward. I may be totally off-base yet once again, especially if the side effects of Prozac can also explain some of the abnormalities that you're seeing. However, since the weird water bowl behavior and her tremoring/pacing/whining/anxiety preceded the Prozac, we're still needing to search for the underlying cause.

Given this constellation of issues, I'll be somewhat surprised if your internist doesn't end up considering the possibility of a macroadenoma, himself. My own internist told us that it's always a possibility that he considers whenever a Cushing's patient exhibits cortisol levels that fall within desired therapeutic range, but starts declining food and water. Apparently the part of the brain that controls appetite and thirst is in a location that is vulnerable when pituitary tumor enlargement occurs.

Soooooo...I apologize for spoiling the rest of your weekend once again :-(. But in good conscience, I feel as though I need to share my own experience about all this since there are so many aspects that are now sounding familiar. This is at least a possibility that I'd definitely want to bring up with the vet on Monday.

Marianne

[Joan2517]

My Puggle, Cooper (who is not a Cushpup) was on Prozac for a few months and did not exhibit any of the signs that you have mentioned. It just didn't work for his separation anxiety or OCD behavior. We stopped it and then tried Elavil, which didn't work either. Then Trazadone, which also did not work, then the CBD oil, which did nothing. At this time, he is not on anything. I suspect that Marianne is right and that is what is happening with Phoebe...

[LeahCC]

He's unaware of the decline in appetite and I will bring up her most recent behavior and see what he thinks about the possibility of macroadenoma when I speak with him. I also thought maybe we're seeing some signs of dementia with the staring into the bowl or at the wall sometimes. She's over 13 years old so that's totally a possibility too. I'm going to monitor her over the weekend and see if there's any improvement. Since she started the Prozac, I have to say her manic behavior has decreased dramatically. She still paces, but she's not galloping around the house and throwing herself at the couch, and she stopped the whimpering during the episodes. So that's good I think...?

I appreciate all the info and I will absolutely be discussing it with him. Yea, it may be bad news but at least I know what's going on. I appreciate all the info and perspective. It's helpful to have some more information.

[LeahCC]

Over the last few days, Phoebe has declined significantly. She paces constantly until she's stopped. I find her staring at the wall or in a corner. Her confusion with water has increased; she's pace and pace and get to it and lean down, but just stares at it and then walks off, sometimes stepping in it or another bowl. She'll do this over and over until maybe the 5th or 6th try she will start drinking a little. She won't eat unless it's hand fed to her, and that's very hit or miss. Her coordination has declined as well. She stumbles over things often and has fallen off the couch while sleeping a couple of times. She's been off the Prozac about 66 hours now and I don't see any improvement. Every waking moment is confusion or misery at this point. I talked with her vet and he wants to see her today if she gets worse, or tomorrow if she's the same, but I'm not really sure what the point of putting her through that would be. From what I've read, it sounds like a pituitary tumor (or tumors) that is growing. I can't put her through a diagnosis and radiation treatment at 13 years old after suffering through Cushing's for 5 months.

My husband and I decided to put her down this weekend. We found a place that will come to your house and take care of everything very compassionately. They were referred to us by a good friend who recently lost his girl. I probably won't be back on the forum for a while because it's really upsetting right now, but I do appreciate all of the help that you guys have so selflessly given. It's been a great comfort to me to know that I had a place I could ask questions and be supported.

Thank you all so much. Please keep doing the good work you do.

Leah

[Joan2517]

I'm so sorry, Leah. It is truly heartbreaking when our babies have to leave us. My heart goes out to you and your husband.

[labblab]

Dear Leah, my heart goes out to you, too, truly it does. Everything you describe sounds so familiar to me, and so heartbreaking. But my husband and I made the same decision with our Sweetheart. Even though perhaps there were things that “could” be done, we felt like our boy had been through enough and we could ask no more of him. But the pain from the decision to release him was profound and deep. I still carry it with me today. So please do know that my heart is with you during these final days, and it will remain with you on Saturday and beyond. It may be that we can be some comfort to you as time goes on. So we’ll surely understand if we don’t see you here, but we’ll leap to your side at any time that you choose to return.

You have graced Phoebe with your loving care from the very beginning, and now you’ll be gracing her with the loving mercy of release. But it is such a hard thing to do, and at such a cost to your own heart and home. I am sending my thoughts of peace and comfort to you all.

I am so sorry.

Marianne