New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

[Mia’s Momma]

Hi everyone,
Our vet has just told us that our sweet little Mia (11 year old jack russell terrier mix) likely has cushings. She started having the classic symptoms in November and has deteriorated since : excessive thirst (like 5-6x her normal amount) and urination, accidents (v uncommon for her), muscle loss (canÂ’t jump up on bed or couch anymore), panting, and loss of her beautiful fur. Over the past 2 months, she has also started developing these awful scabs and hard bumps all over her body (looks just like pictures of calcinosis cutis) and theyÂ’ve gotten worse and worse. We gave her an anti fungal bath today (per vets instructions) and a bloody flap of skin just peeled off her head, it was awful.
The biggest challenge is that we live overseas in a country with very limited health facilities, and basically only 2 vets. They ordered blood work (which took 3 weeks to get results) and found sky high levels of cortisol and ALKP and GGT, which led the vet to conclude - along with all the symptoms - that itÂ’s cushings. They donÂ’t have the capacity to do any more complex tests, and they donÂ’t have access to the meds normally prescribed for cushings. They are basically giving her vitamins, fish oil and researching ways to support her liver functions.
We are heartbroken and not sure what can be done to help Mia, given all the constraints. (We are here for a couple more years, and donÂ’t think she would make it on long flight back home anyway.). IÂ’ve been reading the posts and this seems like such a knowledgeable and supportive community. If anyone has any advice on how we can make her more comfortable (esp the CC) or any other suggestions, I would be grateful. Thank you.

[labblab]

Hello, and welcome to you and sweet Mia. I’m so sorry to hear of her symptom progression — there’s nothing worse than feeling helpless in the face of worsening illness in our loved ones! Mia does indeed sound as though she suffers from the classic symptoms of Cushing’s, including calcinosis cutis. And sadly, we’ve found that CC can be the single Cushing’s symptom that can create the most physical discomfort for a dog. However, here’s a link to a thread here that hopefully may offer you some useful suggestions in that regard:

https://www.k9cushings.com/forum/showthread.php?8909-Calcinosis-Cutis-treatment-thread

From the experience of our members, though, we’ve learned that it’s very difficult to gain significant control of the CC unless cortisol levels are lowered significantly. In that vein, I’m wondering if it might be possible for your local vets to obtain access to Vetoryl (the Cushing’s med that is most widely used worldwide), even though they’re not currently aware of it. Dechra is the company that manufactures Vetoryl, and here’s a link to their worldwide distribution map:

https://www.dechra.com/dechra-businesses/international/our-distributor-network

You can check this map to see whether you’re in a country that has access to the medication. If so, there’s contact information provided that might allow your vets to actually obtain Vetoryl on your behalf. If so, there is a new Vetoryl monitoring protocol that only requires a periodic single blood draw that simply measures a dog’s cortisol level immediately prior to taking their daily Vetoryl capsule. So if you can just get your hands on the medication, the monitoring may not be that difficult for you.

We can talk about all this in more detail later on — the first step would be checking the map and finding out if you’re living in a country with a distributor. So take a look and let us know, and we can continue from there. And once again, welcome to our family!

Marianne

[Mia’s Momma]

Dear Marianne,
Thank you so much for the quick reply, warm welcome and helpful information. It’s such a relief knowing there are so many out there who are so supportive and knowledgeable (though sadly I’m sure that knowledge is gained through difficult experiences). The distribution map shows that we have access to vetoryl here in east Africa! I didn’t think it would be possible to monitor/adjust though given the limitations of the labs (the vet needs to send out the blood work and it takes several weeks to come back)... but perhaps I’m wrong about that given the new protocol you mentioned? We will raise with the vet and hopefully he can offer some insights. (They don’t seem to have any experience trading cushings). Thank you!

[labblab]

It’s so good to hear right back from you, too! Here’s a link to a chart that discusses the new monitoring protocol that I’m referring to:

https://drive.google.com/file/d/1gqUchP2gvFIyG8udZgNS1bWfppWW6fin/viewfbclid=IwAR2DelBbsQeFErzcG9ZODzfWJnFdlbMmZz49p 8wpQPcumL9Y6RtbrcaKAE8 (https://drive.google.com/file/d/1gqUchP2gvFIyG8udZgNS1bWfppWW6fin/view?fbclid=IwAR2DelBbsQeFErzcG9ZODzfWJnFdlbMmZz49 p8wpQPcumL9Y6RtbrcaKAE8)

The chart is embedded in this more extensive post about general guidelines for the use of Vetoryl (trilostane):

https://www.k9cushings.com/forum/showthread.php?8925-GENERAL-GUIDELINES-for-Vetoryl-(trilostane)-Dosing-amp-Monitoring-with-ACTH-Stimulation

A lengthy delay in getting blood test results would obviously be far less than ideal. But given your circumstances and your description of Mia’s worsening symptoms — most importantly, the worsening CC — it may be a risk that you’d be willing to take. I don’t mean to scare you, but we’ve had dogs here who have had to be euthanized due to the discomfort caused by uncontrollable CC. If I was in your shoes and I could actually obtain Vetoryl there in Africa, I think I’d be tempted to go ahead and start with a very low dose while watching very carefully for ill effects. If any appear, you can always discontinue the medication, especially during the time period that the blood test is pending. Please know that I’m not a vet myself, and normally I would not recommend treatment without the benefit of speedy testing. But I do think your situation is out of the ordinary. So I’d definitely show this info re: Vetoryl to your vet, and see whether treatment may be a possibility.

Do let us know about any additional questions. We can supply you with more info and more links if you think that might be helpful. Dechra is also very happy to directly consult with vets. That might be the very first step, if your vet is willing to contact them for additional info and support.

Marianne

[Mia’s Momma]

Thank you, Marianne! Showing this info to our vet and seeing what may be possible sounds like a good first step. Fingers crossed.

[Mia’s Momma]

Hi Marianne,
The vet just contacted us and said they got Vectoryl and would like to start Mia on it ASAP! My concern is that they only have 30 mg capsules (leftover from another patient, they can’t import anymore. And when I reached out to the distributor, they confirmed that it’s not available here...despite what the map says). Mia is only 8.5 kg and the vet knows that the recommended dosage to start her on would be 17 mg or so. But he says it’s important to get some meds in her asap given her condition, and strongly recommends we open up/split the capsule and give her half the powder (buried in some minced meat) once a day. While we all keep working on trying to import at the right dosage.
This will of course be very imprecise. (And given the lag time and inability to get blood work done, we know it will be a big challenge to try to fine tune the dosage going forward as well.)
I know it’s not fair to ask this of you since you’re not a vet, but I would love your thoughts on this. Thank you!

[labblab]

Oh my, that’s a tough call. I have a couple of questions for you in the midst of thinking things over. How many 30 mg. capsules does your vet have? Has your vet been able to contact Dechra directly to ask about dosing and distribution? Was it Dechra or somebody else that *you* were able to talk to yourself? It just seems very odd that Dechra would include your part of Africa on their distribution map if Vetoryl truly isn’t available there...

Off the top of my head, here are a couple of thoughts. Dechra specifically warns against opening capsules and dividing powder. Apparently there are several reasons. First, they don’t want humans exposed to the powder through their skin or inhaling it (so gloves and a mask should be worn if you do plan to open capsules). Also, as you already know, it’s impossible to know for certain whether the active ingredient is evenly divided among the powder, so dosing is inaccurate. Finally, it seems as though the medication may not be metabolized as efficiently because it’s not intended to be released and absorbed into the body until it reaches the stomach.

So to me, whether or not it’s worth it to take the risk would likely depend on how many capsules you’d have at this point, and also what the likelihood is that you’d ever get any more Vetoryl of any dose. If you don’t have many capsules on hand and you’re not likely to get more, I don’t really see the point of giving Mia a few doses that may not even be accurate. In order to be therapeutic, she’d need to remain on an appropriate daily dose far into the future without interruption. So if it was me, I’d want to have a better idea as to the longterm gameplan before launching into dividing those capsules that you may have on hand.

I’ve just been scouring Dechra’s international website to try to find some decent and accessible contact information for your vet, but they no longer seem to be very user-friendly in that regard :-((. If the country you’re in is part of the British Commonwealth, though, maybe Dechra U.K. or Dechra Australia would be willing to field some questions. Or if you want to tell us here what country you’re in, I can even try calling Dechra U.S.A. to see if they have any useful suggestions for you.

Circling back to my initial questions, though, do let us know about the number of capsules and your contacts thus far, and then we can keep thinking and talking.

Marianne

[Mia’s Momma]

Thank you for your reply. It’s so helpful to have someone knowledgeable to bounce things off of. .I feel like we are flying blind here and are grasping at straws, anything to alleviate little mias suffering.
So, yes, I was in contact with a Dechra representative (regional sales rep in Europe responded to my email) who told me that Vetoryl is not available in Tanzania (where we are posted) or neighboring countries. I even shared the distribution map, but they said it was inaccurate.

Our vet says they have several months supply of the 30 mg capsules, but he is not optimistic they can get more. While he can write the prescription for it, there is no one in country who can fill it and they don’t have access to a distributor (he says this is only the 4th case of cushings vet seen in their practice, and they are the main - if not only - clinic around). I am talking with some friends though and may be able to get a vet in the US to help write a prescription matching the local one, in which case we would be able to order online through petco or chewys or one of the other online places that can mail to us. So, in sum, I think it is possible for us to get more. (Adjusting dosage and getting the right one in a timely manner is another issue, since mail takes at least several weeks.)
The vet was very insistent that we give this a try and was pretty sanguine about opening up the capsule (I’m more nervous about it, but am willing to try anything that may help, as long as it doesn’t hurt her). I think he was alarmed at mias rapid deterioration. He is apparently consulting with a colleague in the UK, but I don’t know that he’s in touch with dechra itself.

Thank you so much for your time in trying to help us sort through this. Little Mia (and her momma) are so very grateful!

[labblab]

Oh you are so welcome! But that's what we're here for, and Mia is so very lucky to have a momma who's willing to work so hard to help her!!

For all the reasons I listed above, opening the capsules is not a preferred method of dosing. However, having said that, over the years we have seen a few vets who have gone ahead and recommended doing that when other options are not available. So this would not be a "first." In a sense, I view it kind of like a clinical trial for a human patient who has run out of formally approved methods of treatment available to them. You have no guarantee that the treatment will work, and you may even risk doing harm. But when no other alternative is available, the risk may seem worth taking. Given Mia's rapid and significant decline, that may indeed be the choice you make.

In Mia's case, one thing I don't worry about is the accuracy of the Cushing's diagnosis even though your laboratory testing options are restricted. Her symptom profile is classically "Cushing's," and the apparent calcinosis cutis is kind of the frosting on the cake. Even though it requires a skin biopsy to definitively diagnose CC, what you've described with Mia is entirely consistent. And when CC is present, a Cushing's diagnosis is essentially guaranteed. So I do think she has Cushing's, and I don't think she will have the opportunity to improve unless her cortisol is brought under control. So there you have it.

My heart absolutely goes out to you in making these decisions, though. My own Cushpup (my avatar) was a sweet Lab boy who was profoundly affected by his disease. I watched his quality of life disintegrating in front of my eyes. He didn't have CC, but the thirst/urination/appetite, the muscle loss, the balding flanks, the constant search for a cool place to lie down, his growing inability to jump or climb stairs or even to walk for more than a few steps without halting and panting - he was losing everything that made for a "dog-worthy" life. He was actually the first trilostane patient for our specialist here in Atlanta, and so, in a way we were entering a clinical trial of our own. Dosing levels were a lot higher back when he was treated in 2003, and the whole protocol was somewhat different. There was a lot of uncertainty, and I knew we were taking a risk by trying what was then a very new medication. But without treatment, I knew we'd soon be losing him anyway. And so it was a risk I was willing to take to try to make him better. And better he was, for a while. In the end, we lost him to what we assume were the effects of his enlarging pituitary tumor. But I'll never know for certain that we also didn't make mistakes along the way with his medication, perhaps overdosing him to an extent that may have caused some damage. I will always wonder, and I still have moments of such regret and even guilt. Still, if I was presented with exactly the same situation once again, I believe I'd still have opted to treat him in the way we did -- to give him what I'd hoped was his best chance to regain his health.

I'm being so very long-winded here because I want you to think carefully about how you're guessing you'd feel if it turns out that opening up the Vetoryl capsules turn out not to help Mia, or even if they were to make her more ill. It's impossible to know in advance how anything will turn out -- if only we had that crystal ball!!! But as long as you accept that it's a gamble going in, then it may be a gamble that feels worth taking. I know it feels like an awesome responsibility, though.

As far as perhaps enlisting the help of some friends with importing Vetoryl, that would be great. In that regard, here in the U.S. there is an additional option of obtaining custom-compounded doses of trilostane (active ingredient in Vetoryl). Specialty veterinary compounding pharmacies do exist, and would offer a wide range of dosing possibilities. I don't know whether any veterinary pharmacy here in the U.S. will ship medicine outside of the country, whether it be somebody like Chewy or a compounding pharmacy. But if you can get an American vet to rewrite the Rx and the medicine could be delivered to a friend here in the U.S., then hopefully the friend could send it on to you even if the med couldn't be mailed directly. I know, this is all a lot to think about! But kudos to you for taking all these steps to take the best possible care of your little girl!

[Mia’s Momma]

Thank you for all the thoughtful feedback. Sounds like you had to make some agonizing decisions; I am so sorry. We are at that same point right now: she is disappearing before our eyes (we are up most of the night trying to prevent her from scratching b/c of the CC, and we inevitably fail to stop the one scratch that results in a bloody mess); we fear we will lose her very soon if we don’t try something. So, we are willing to take the risk....and live with the consequences, knowing how uncertain the outcome is. So, we opened up a capsule this morning and gave her the first “dose”.
Thanks for the advice trilostane - we are now in an all-out search for a vet in the US to rewrite an Rx. (We actually have a “US address” since we work for the govt, so if they can write a Rx, the rest is “easy”, if slow.). Keeping fingers crossed that all goes well!

[labblab]

Absolutely, all fingers are crossed — and toes, as well!

In your quest for medication, one thought occurs to me. You might try contacting an American Cushing’s specialist who has also served as a clinical consultant to Dechra. His name is Dr. David Bruyette, and he was actually a member of our forum here at one time. I won’t bother listing his many accomplishments and all his expertise because you can read about that elsewhere. But he definitely knows his stuff, and he might be able to offer you some suggestions in terms of your dilemma in obtaining medication. He used to be the medical director for VCA Veterinary Hospital in Los Angeles, but now heads a private veterinary consulting service. Here’s a link to his informational page. I’d suggest you try emailing him personally (his email address is on the page I’ve given you). Definitely tell him you were referred to him with your question by the staff here at K9cushings.com. He has always been especially kind and helpful to our members here. He may not be able to offer any suggestions that you don’t already know about, but you just never know...

https://www.veterinarydiagnosticinvestigation.com/about-us

And no matter what, good luck and please do keep us in the loop!

[Mia’s Momma]

Thanks for the great tip/contact! Will definitely keep you posted...and will no doubt continue to have more questions too. So glad I “found” you all.

[Mia’s Momma]

Hi there,
Quick update on Mia’s situation: we are on day 9 of Vetoryl (15 mg from a split capsule) now. The good news is that she’s had no adverse side effects and seems to have regained quite a bit of energy (so happy to see a little bounce in her step, her wagging tail, and her eagerness to be petted). The bad news is that her CC (and, we think, secondary skin infection) continue to worsen: the CC has spread all over her back and now all over her head, behind her ears, and on her hind side; she is also oozing more and more pus and is itchier than ever.
We will see the vet on Tuesday and they will do a blood test then, but we won’t get results back for a couple weeks. Given the current symptoms, not sure whether the dosage should be increased or not? (We found a an American vet friend who will kindly rewrite a prescription from us after this doctors visit, so we should be able to get the new dose in a couple of weeks!). Also, would welcome any other suggestions for her skin relief. We’re going to ask the vet if he thinks she should be on antibiotics . Thank you!

[labblab]

Welcome back, and I’m so glad to hear that Mia is showing at least a bit of improvement in some areas. How about her thirst — have you seen any changes with that yet? It’s also great that you have a vet in place to help intervene with future Vetoryl shipments. If it just wasn’t for the darn CC, I’d say that things were going as well as we could hope for right now. Since I don’t think there’s any way that you could divide the capsule contents more accurately than just splitting them in half, I fear you’re kind of stuck in terms of dosing options right now. The only alternative would be giving the whole capsule, and it seems as though that would be a stretch until you have the results of the blood testing. Such a frustrating situation, for sure...

As far as the CC, if by any chance you’re a Facebooker, this is a group that’s been recommended to us for support:

https://www.facebook.com/groups/988564191285009/

I’m not registered on Facebook myself, and unfortunately it’s a private group, so I’ve never been able to view it myself. But if you can access it, that would probably be a good source of info and suggestions. Barring that, you may want to take a closer look at the CC thread on our Resources forum here that I referenced in an earlier post.

I sure wish I could be more directly helpful to you, both in terms of the Vetoryl and the CC. But hopefully things will start turning around before too much longer!

Marianne

[LauraA]

A lot of people have used Activated Charcoal with success for CC. You make it into a paste and put it on your dog until it has dried (approx 20 minutes). Then you can just rinse it off. But it is going to make a mess :) DSMO is something else that is commonly used. You only do a small section of your dog at a time though, so one small section each day maybe. Some shampoos that are recommend for CC are Jax and Daisy and trixchlor is meant to be really good.

[labblab]

Many thanks to Laura for her suggestions! Also, it occurs to me to mention that many people have warned that even after effective treatment has been started, CC often tends to look worse before it finally makes the turnaround to improvement. I think this is because the calcium deposits that initially formed have to follow a natural progression of breaking through the skin’s surface before there will be resolution. The treatment of the underlying Cushing’s will hopefully halt the production of new underlying deposits. But unfortunately the ones that already exist will follow that progression, and for a while, the skin may look even worse and your goal remains keeping the discomfort and possible infection associated with the existing and newly erupting plaques as controlled as possible.

I wanted to mention this so as to continue to give you hope even though Mia’s skin may be looking worse. Every step you take to lower her cortisol will hopefully help things in the long run. But in the short run, things may continue to look worse for a while longer. But do hang in there!

[Mia’s Momma]

Thank you for the words of encouragement and the suggestions! Not on FB, unfortunately, but you both have shared some good ideas here. We will give some of them a try (whenever we can get these items here...sigh). With how bad her skin looks, I’m wondering if there’s more than CC going on now...if I can figure out how to post some pictures, I will do so and ask for some thoughts.

[labblab]

Oh, poor little Mia and poor you guys! I’m no expert, but those pictures do look pretty classic for CC to me. I’m going to send a message to one of our other administrators who is very active on Facebook and who first recommended that FB group to us. Perhaps she’s become aware of some other non-FB resources, as well, that she can recommend. I’ll surely hope so.

[Mia’s Momma]

Thank you! I wasn’t sure if I posted the pictures correctly and who could view the album (welcome your suggestions if I should’ve posted elsewhere...still don’t quite get the hang of some of the forum features!). We had a pretty disappointing/unhelpful visit to the vet today where he just prescribed more cream for her skin and said to come back next week for a blood test. Upon our inquiry, he agreed that antibiotics would be a good idea and prescribed some. He said no baths (though she smells awful from all the draining pus and infection) for a while as it would be too taxing for her skin. Sigh.

[labblab]

You posted the pictures exactly correctly. In terms of antibiotics, I think there’s some thought that minocycline may have particular value in treating CC. Don’t know whether that’s available you or not, but here’s a related article:

https://www.k9cushings.com/forum/attachment.php?attachmentid=8268&d=1521729240

And I’m afraid I don’t know what to think about the bathing. I think we’ve heard both approaches — that it’s s good thing vs. that it’s not so great :-(((. I’ve just now sent off my message to our other staffer, so hopefully she’ll have some additional thoughts to add before long.

[Mia’s Momma]

Hi there, we took Mia for her check up and blood work today. She seems to be doing well on Vetoryl (day 21 now, more energy, less water intake) but still awful Cc eruptions and other skin infection. He prescribed more antibiotics and said still not to bathe her but to rub coconut oil on her skin, over the crusty scabs/infected areas (which are mostly drier now, but some parts still ooze pus and sometimes get bloody). He was pretty insistent that coconut oil would be helpful, but we’re a bit skeptical. Wondering if anyone has tried that on bad CC? Thank you.

[labblab]

Hello again! I’ve just now heard back from Glynda, our Administrator who is also active on the CC Facebook group. Here are some suggestions that she wanted to pass on to you. In the event you still encounter problems with having Vetoryl shipped from the U.S., she first leads off with a possible compounding medication contact there in Africa. Her subsequent message relates to the CC. Like Laura, she's also seen the recommendation to use activated charcoal.


[Our new member] can try contacting the Pharmacy Council in Tanzania to see if they can help her find a compounding pharmacy than can compound 10 mg trilostane or repackage 30 mg Vetoryl into 10 mg capsules. Link to that regulatory agency is https://www.pc.go.tz/

With respect to the CC, the two treatments that seem to work best for cc dogs is DMSO which is a long standing treatment but a lot of folks see good results with activated charcoal that you make into a paste, apply and let sit for awhile then rinse off. A member shared a video on how she applies the paste and rinses it off. She uses her hand to gently rub the paste off and the dead skin/scabs wash away. She did this for two months straight and it worked great for her dog. If her dog is itchy or he smells bad, he likely has a secondary bacterial/yeast infection and the vet should prescribe an antibiotic and an antimicrobial shampoo. Hopefully the vet has those. Amazon is global and if they ship to East Africa, she can order the activated charcoal and an antimicrobial shampoo. She or her vet should shave all of the hair on and around the affected parts of his body to keep it as clean and dry as possible. If the dog is rolling around on the floor to try to scratch the itch, she should consider putting a little t-shirt on him.

I remain surprised that your vet continues to advise against bathing, especially if surface skin infection is expected. There are several good quality medicated shampoos that folks have recommended here over the years for skin issues. From my personal experience, I found that Douxo Chlorhexidine shampoo worked very well to heal a recurrent skin staph infection on my nonCushing’s Lab girl when oral antibiotics failed to provide a permanent cure. I ordered it from Chewy, but here it is on Amazon, along with other related products such as spray and wipes. If your vet remains adamant against full body bathing, directly cleansing the lesions themselves with chlorhexidine spray or wipes may be an option for you.

https://www.amazon.com/Sogeval-Douxo-Chlorhexidine-PS-Climbazole-Shampoo/dp/B00G3D8JHO/ref=sr_1_5?crid=5F6MCQYR5J8V&dchild=1&keywords=douxo%2Bchlorhexidine%2Bshampoo%2Bfor%2Bd ogs&qid=1619784699&sprefix=Doux%2Caps%2C198&sr=8-5&th=1

Anyway, we’re surely hoping you’ll soon be seeing some improvement, no matter what route you go.
Marianne

[Mia’s Momma]

Thank you, Marianne! We’ve ordered one of the shampoos (and wipes) and hope that our vet will agree it’s ok to bathe her by the time it arrives. Don’t quite understand why he’s so against it and keeps insisting on coconut oil instead (which I’ve not read anywhere as something that helps CC). So hard to know how best to keep little Mia comfortable. Thank you.

[LauraA]

A lot of people in the CC facebook group do use coconut oil, but they use it in conjunction with the charcoal or DSMO and shampoo. Once the sores/lesions have started to dry out they will massage in the coconut oil. Trizchlor shampoo is another shampoo that is commonly used. But I have never seen coconut oil have much of an effect on CC when it is used alone.

[Mia’s Momma]

Thank you, Laura. That makes sense, using coconut oil in conjunction with other stuff.

[bichons9]

If you don't mind ..What is CushingÂ’s???

[Squirt's Mom]

bichons9, When you see Cushing's with the capital A and weird markings it has something to do with texting on a phone I think. It is not a separate form of Cushing's. It's some sort of typo or autocorrect or somesuch.

[Mia’s Momma]

Thanks Squirt's mom. I never understood myself why my messages came out like that with the A at the end of Cushing's.
So, it's been over 30 days and we are so pleased/relieved to report that little Mia is doing pretty well on 15 mg of Vetoryl: more energy, reduced water intake and urination (to almost "normal" levels) and her CC even seems to be stabilizing (she still has the lesions/scabs, etc all over her body, but they seem to be less itchy/drier with fewer "eruptions" and even a bit of nice pink skin showing underneath and a bit of fur regrowing). While the clinical signs seem to indicate improvement, we don't have any clear signs in the bloodwork. As you may recall, since we are in a developing country with no labs, all the blood work has to go out for testing; yesterday we got blood tests back from a few weeks ago (from Day 20 on Vetoryl). Unfortunately, they misplaced a vial and didn't do the cortisol test (!) so we only got back the CBC panels and a few others, which seemed inconclusive. My concern/question is regarding her liver enzymes, which were already sky high (when the vet last did blood test March 23, pre-Vetoryl) and seemed to have inched up a bit more (ALKP 2460 and GGT 137, and less so S-ALT 135). The vet was not able to clarify if there are any implications and told us to just keep doing what we're doing (Vetoryl 15 mg) and give her some supplements to support her liver. Does anyone here have a sense of whether this is something we should be worried about/watch out for? As always, grateful for any suggestions. Thanks.

[labblab]

Wow, that’s great news about the improvement in Mia’s symptoms, and especially the CC! Hooray!!!!

That’s indeed so frustrating that they lost the cortisol tube, but it sounds as though you guys are on the right track at the moment in terms of dosing. I’d keep up the status quo as your vet is recommending, including the liver supplements. I think the increase in liver enzymes was not surprising since Mia’s cortisol had remained uncontrolled during at least part of the interim time period between blood draws. We are really used to seeing super high ALP levels in our dogs, as well as more moderate increases in other liver enzymes. With continued treatment, hopefully they’ll cycle downward again but they may never return to totally normal range in a Cushpup. Although this is a reflection of the physiological effect of the elevated cortisol, typically this doesn’t mean that the liver is actually impaired to the extent of presenting functional problems.

So all in all, I think this is an excellent report — fingers crossed that it continues!
Marianne

[Mia’s Momma]

Thank you, Marianne! We are so grateful that sweet Mia is doing better and are keeping fingers crossed that she continues along this path. Your message is very reassuring about the liver enzymes - I won’t worry about it anymore then! While it’d be helpful to have accurate/real time blood results and real monitoring capacity, we will take what we can get. And I’m so glad to have you and others on this forum for support and for all the helpful information!

[Mia’s Momma]

We finally got Mia’s cortisol test results back today: It came down from 173 (2 months ago) to 111 (after 30+ days of Vetoryl)! I know it’s not accurate like an ACTH stim test, but still seems like great news. Our vet was excited, and so are we.

[labblab]

Woo Hoo!!!! I think that’s terrific news! For our U.S. readers, that translates into approximately 4 ug/dL, and according to the pre-Vetoryl monitoring protocol, that is right within the desired range for a dog who appears to be feeling good and for whom symptoms are significantly resolving. I’m so happy for you guys!! Under these circumstances, I’d definitely keep on with the status quo. It’s possible that a slight dosage increase might be warranted in the future if some symptoms do linger, especially the CC. But for the moment, I think you have every reason to celebrate! ;) :D

Marianne

[Mia’s Momma]

Thanks, Marianne! Yes, the vet says to continue what we’re doing. It’s great to know the “translation” since that’s how I always see the numbers represented and, more importantly, to know we’re within a good range. We will continue to keep a close eye, esp on the CC which has been so problematic for Mia. Seems like it’s taking forever to resolve, but I understand it usually does take a few months. We are so happy…just 6 weeks ago we were agonizing that we may be losing our pup in days. Now we know we have more time with our sweet girl, what a blessing.

[Mia’s Momma]

Hi Marianne - You mentioned that we may need to consider a slight increase in dosage if the CC doesn’t improve, and I’m wondering when we should discuss that with our vet? The reason I ask is that Mia’s CC not only persists (which we expected since we’re just at the 2 month mark on 15 mg of Vetoryl, then trilostane) but seems to be worsening on her head. On her body, the scabs/lesions etc seem to be drying out and a bit of fur is growing back, signs of a slow recovery at best or status quo at worse. Her head, however, has gotten worse in past 2 weeks. The pustules and lesions etc continue to push through and she wakes up with a bloody head on a daily basis now; it also seems to be really itchy as she is constantly trying to roll around in it to get relief. All her other symptoms seem to be under good control, but we’re starting to worry about the Cc on her head. Appreciate any advice you can share. Thank you!
PS. I tried to add a photo of her head in my album, if that helps.

[labblab]

Oh gosh, I just now saw your photo of Mia’s little head and I feel *so* badly for her and for you guys! So this is what I’m thinking about as far as a dosage change. First of all, here’s that link to the pre-Vetoryl monitoring chart that I’ve been relying on in terms of recommendations:

https://drive.google.com/file/d/1gqUchP2gvFIyG8udZgNS1bWfppWW6fin/view?fbclid=IwAR2DelBbsQeFErzcG9ZODzfWJnFdlbMmZz49 p8wpQPcumL9Y6RtbrcaKAE8

I’m thinking that her situation falls within the first category on the left-hand side of the page: pre-Vetoryl cortisol level between 40 - 138 nmol/l, but still suffering from unresolved Cushing’s symptoms. As you’ll see, the recommendation in that situation is to increase the dose and/or frequency. As long as Mia isn’t exhibiting any symptoms of *low* cortisol (lack of appetite, lethargy, etc.), I’d be inclined to ask your vet about going ahead now with an increase. It sounds as though perhaps you’ve now gotten in a supply of compounded trilostane? How much flexibility do you have in terms of dosing? If it was me, I’d be inclined to increase from 15 to 20 mg. if possible. And if it’s feasible to break that into 10 mg. twice daily, that might help Mia even further by maintaining a more consistently low cortisol level throughout a complete 24-hour cycle. I realize that may not be possible, however, depending on what form your current med supply is taking. Also, if you do switch to twice daily dosing, bear in mind that each dose should be given with a meal and that may or may not suit your household schedule.

So let us know how things stand in terms of your trilostane supply, though, and then we can scheme together a bit more. And please do give sweet Mia a gentle hug from her family here!

Marianne

[Mia’s Momma]

Thank you, Marianne. Your advice is helpful, as always. We now have a vet appointment Friday and will ask him about upping dose and/or frequency. We do have a supply now of compounded trilostane (15 mg tablets), which I assume we can cut up (though not sure about exactly 20 mg)? She’s fed twice a day so we could change the frequency to twice daily dosing if we can get the quantity right. Poor Mia, her head is really bothering her- breaks my heart to look at her, sweet girl. Thx.

[labblab]

Under these circumstances, I might be tempted to give her the full 15 mg. tablet in the morning, and then add a half tablet of 7.5 mg. in the evening. If her weight is still around 8.5 kg. (approx. 19 lbs.), then the daily total of 22.5 mg. doesn’t seem really excessive, especially since the flowchart states that the dose could be increased up to 50% in the event that symptoms remain uncontrolled. Also, in the past, Dechra has advised us that it’s OK if the daily total is not evenly split in half for twice daily dosing. When that’s the case, though, they say the larger portion of the dose should be given in the morning.

Of course, the other option would be to simply give 1.5 tablets in the morning. But if you can handle the twice daily dosing, I think I’d give it a try if Mia were my own dog. Of course I know you’ll be watching closely for any ill effects, but hopefully an increase will only prompt positive changes. If not, you’ll know to quickly back off from the higher dose.

Marianne

[Mia’s Momma]

Thank you for the good advice. Her weight has actually gone back up a little to 8.8 kg, which is great. We will propose your idea to the vet tomorrow. Hopefully, he will agree and it will help. Will keep a good eye on her for sure. Thank you.

[Mia’s Momma]

The vet agreed with your recommendation so we started Mia on 15 mg in am and 7.5 mg in pm yesterday. We’re keeping a close eye - so far so good. (She seemed to sleep better her first night and wasn’t trying to itch as much…we might be reading too much into it too early, but are optimistic). Thx!

[Jonathan]

After reading this thread....I cant even begin to say how impressed by the support given.
And bless you, Mia and her Momma! :)

[Mia’s Momma]

Thanks, Jonathan. And I 100% agree with all the support here - I honestly don’t know what we would’ve done so far without all the insights and support from this group! We are so grateful.

[Mia’s Momma]

Hello Marianne and all,
Checking in to get your advice on a new disturbing development with little Mia. She’d been doing so well on trilostane with her fur growing back etc (though still some stubborn CC on her head). But 5 days ago, she started having very labored breathing. Her breath is so shallow and she often seems to be in respiratory distress. One night it was so bad we didn’t know if she would make it. Everything else still seems ok: good appetite, etc. though a bit of difficulty chewing/swallowing . We plan to take her to the vet soon , but given his lack of knowledge, I wanted to check in with this group to see if any advice (or things we should ask him about? Eg upping her dose?). She’d been doing so well, not sure what’s wrong now. Am a worried mama. Thanks for any advice you can offer.

[Mia’s Momma]

Hello Marianne and all,
Checking in to get your advice on a new disturbing development with little Mia. She’d been doing so well on trilostane with her fur growing back etc (though still some stubborn CC on her head). But 5 days ago, she started having very labored breathing. Her breath is so shallow and she often seems to be in respiratory distress. One night it was so bad we didn’t know if she would make it. Everything else still seems ok: good appetite, etc. though a bit of difficulty chewing/swallowing . We plan to take her to the vet soon , but given his lack of knowledge, I wanted to check in with this group to see if any advice (or things we should ask him about? Eg upping her dose?). She’d been doing so well, not sure what’s wrong now. Am a worried mama. Thanks for any advice you can offer.

PS. For reference, she is breathing quite rapidly at app 60 bpm even when resting.

[labblab]

I’m so sorry to hear about this setback for Mia! One possible explanation that occurs to me is a blood clot in her lungs (“pulmonary thromboembolism”). Unfortunately, Cushing’s can make dogs more vulnerable to developing clots, and her symptoms do seem consistent with that possibility. Here’s a link to an article that gives more info:

https://vcahospitals.com/know-your-pet/pulmonary-thromboembolism-blood-clots-in-the-lungs-in-dogs

According to this article, there may not be a safe intervention aside from trying to keep her quiet during the time it takes for the clot to dissolve. But I confess that I’m not familiar with treating this condition, so you may want to try to research it further if it seems like a possibility to you.

I’m just so sorry to hear about another complication for little Mia after she was finally doing better. Hopefully, whatever it is that’s causing this episode will pass and she’ll stabilize once again. I’ll surely be keeping my fingers crossed!

Marianne

[Mia’s Momma]

Thank you for the quick response, Marianne. This is worrying indeed. (I had hoped it might be something we could address with adjusting her trilostane dosage). We will ask the vet about this tomorrow and will keep fingers crossed in meantime.

[Mia’s Momma]

Hello Marianne and everyone! Hard to believe it’s been almost a year. I am happy to report that after a very rough patch in July where she was diagnosed with congestive heart failure on top of her cushings, Mia has been doing very well! (in fact, we’ve been calling her our little miracle baby, such a gift that she is still with us.) She is on 30 mg of trilostane a day (split b/w am and pm, 15 mg compounded pills) + furosemide for her heart. She’s been happy and active and all her Cushings symptoms (even cc) controlled…until app 2 weeks ago. We noticed those stubborn cc bumps and eruptions starting to appear on her head and behind her ears again and she has been drinking more and more water and is seemingly more lethargic. We are considering upping her dose of trilostane.
As you may recall, we are in Africa with no ability to do laboratory tests in real time (several weeks to get blood work back from labs outside country) so need to go by clinical signs. Would greatly appreciate your thoughts on this, including whether it’s common to adjust dosage at this stage and how much we should consider upping. (She is about 8 kg). You’ve provided such a great advice in the past and we credit this forum with helping little Mia come this far! Thx.

[labblab]

Welcome back, and I’m so happy to hear that Mia has had such a good year! But at the same time, I’m so sorry to hear that some problems are resurfacing. It definitely looks as though her cortisol is elevating once again, and yes, dosage readjustments can be needed at any point in time. So even though it’s frustrating, it’s not unusual for this to be happening.

I do remember all your testing challenges, and also all the hoops you had to jump through to get the medication. You are such good advocates for Mia! And although the lack of the ability to test is not ideal, I really believe the reemergence of her CC is pretty much a guarantee that her cortisol is running too high once again. I know you’ll want to nip that in the bud before it has a chance to really settle in and worsen. I don’t know how quickly you would be able to order some additional compounded meds. In an ideal world, if it was me, I’d probably hope to get some new pills with a dosage strength of 7-8 mg. If I could, I’d probably start out by adding one of those pills to her morning dose. If her symptoms didn’t improve, I’d add another one of those pills to her evening dose.

If you can’t get more pills easily, though, I think I’d go ahead and add another 15 mg. in the morning. In the past, Dechra has advised us that if uneven twice-daily doses are given, it’s best to give the larger dose in the morning. Giving Mia a full 15 mg. increase does seem like quite a jump (50%), but it’s actually within the published guidelines for the Vetoryl pre-pill monitoring protocol when cortisol levels are remaining too high and dogs are symptomatic.

https://drive.google.com/file/d/1gqUchP2gvFIyG8udZgNS1bWfppWW6fin/view?fbclid=IwAR2DelBbsQeFErzcG9ZODzfWJnFdlbMmZz49 p8wpQPcumL9Y6RtbrcaKAE8

Whatever you end up doing, I know you will be watching her like a hawk. So if the increase seems to be creating problems rather than helping, you’d immediately stop it. But if I was in your situation, I believe this is the approach I’d take. I’m certainly wishing you well, and we’ll be so anxious for additional updates when you’re able to give them to us.

Marianne

[Mia’s Momma]

Thank you, Marianne! So helpful, as always. I appreciate the quick and thorough response. Our vet took mias blood today and said the lab situation has improved and we can get results in 3 days now. He suggested we hold off on upping the dose until then. (The results may be generally helpful but she hasn’t had blood work done since last August so not much to compare). Our compounded trilostane pills are scored, so should be easy to cut in half so we can up her dose by 7.5 mg when we hear back. I don’t want to wait too long though - the CC was a nightmare we don’t want to repeat! Thanks, again.

[Mia’s Momma]

Mia is responding well to the increased dose so far. (Drinking less water, scratching less, more energy…and no negative side effects.). Fingers crossed we keep moving in this direction. Thank you, again, for the good advice!

[labblab]

This is such good news — thanks so much for the report! I’ll surely be keeping my fingers crossed that sweet Mia continues to do well.

Marianne

[Mia’s Momma]

Hello again. It seems like I only hop on the forum when a new problem emerges…and here we are again. Mia has been doing great with her cushings and heart condition: all symptoms controlled, happy, energetic, good appetite and as sweet and loving as always, if slower. Then, 2 weeks ago she started exhibiting new symptoms: staring into space/walls, walking around in circles seemingly disoriented and confused, restlessness and pacing (including for long stretches during the night), and not responding/hearing when she’s called. Seems like it might be dementia, which I know is not uncommon given her age. But I also wonder if it could be related to her cushings? Also wondering what you all thought about anipryl (for possible CCD, knowing it may have implications for cushings as well…esp since she’s already on trilostane)? As you may recall, it’s nearly impossible for us to do any testing (aside from basic blood work) and also hard to procure meds, so appreciate any insights you may have. As always, thank you!!

[labblab]

Hello again, and we totally understand that we don’t hear from you as often when things are going well — that makes perfect sense. However, here we are again, and I’m afraid my speculation about Mia’s problem this time is not good. Back when you first joined us and I introduced myself, I spoke a bit about my own Cushpup and the fact that we lost him to what we assume was brain damage caused by enlargement of his pituitary tumor. We never performed imaging to confirm that this was the case, but his symptoms were consistent with brain inflammation/encroachment. Unfortunately, most all of the symptoms you describe with Mia are ones that we also saw in our boy. I don’t believe you’ve ever had access to testing that could differentiate whether Mia likely suffers from a pituitary tumor vs. an adrenal tumor. However, pituitary tumors are much more common. And as I say, her new symptoms are consistent with the effects of an enlarging pituitary tumor. Before going into a lot more detail about that here, I’m going to direct you to a thread on our forum where members have shared their experiences and knowledge about these “Macroadenomas.” I go into a lot more detail about my own boy in a couple of replies that I’ve posted there myself.

https://www.k9cushings.com/forum/showthread.php?3567-Macroadenomas

Unfortunately, I know this won’t be cheery reading for you. After all the treatment hurdles you’ve survived so far, it will seem incredibly unfair if this turns out to be Mia’s problem. And perhaps it’s not — perhaps it is instead dementia as you’re wondering. But go ahead and take a look at this thread, and then we can talk more about the possibilities either way, including medication treatment since I know that surgery/radiation would not be an option for you. For instance, I do think Anipryl could perhaps be added if dementia turns out to be the more likely diagnosis. If a macrotumor instead seems more likely, then Mia might benefit from a steroid to reduce the inflammation (as crazy as it sounds to give a steroid to a Cushpup). So do have a read, and then we can talk more.

Marianne

[Mia’s Momma]

Hi Marianne,
Thank you, as always, for your quick and very helpful response. As I read the macroadenoma thread, it became very clear to me that this is what’s going on with Mia as well. As you noted, all the symptoms are there - and several more I hadn’t mentioned previously (head bobs, tremors, mouth not working properly to drink/eat). It was heartbreaking to hear of everyone’s experiences (including yours with Barkis) and to know that’s the fate that awaits little Mia. (So far, her appetite is still great and her bowel/urinary movements all normal and controlled, so we are grateful for that).

Unfortunately, we don’t have the option of mri or ct scans, or treatment with surgery or radiation (or maybe we’re fortunate not to have those options, as the decisions regarding which path to take can be agonizing). I’m going to discuss prednisone with our vet, though the trick will be balancing that against her trilostane without testing to help us track levels. But, as from the beginning, we will rely on clinical signs.,.and the very helpful insights and suggestions provided on this forum. (He has also given her melatonin in the past to help calm her down when stressed/anxious…I wonder if this might help her sleep?)

I’m saddened to know this is what’s happening, but I’m glad to be armed with info so we can take care of Mia as best as we can and give her some comfort. Thank you for all the kind and loving support.

[labblab]

I am so very sorry about little Mia’s situation. She has been so brave and you have been such a loving advocate for her throughout all her challenges — it broke my own heart to send you to read that thread. But I know you’ll continue to do everything you can to keep her comfortable for as long as possible. Please come back anytime you wish, even if it’s just to tell us how you’re doing yourself. We are always here for your whole family, and I know how challenging this journey can be…

Sending gentle hugs to sweet Mia and huge hugs to you,
Marianne

[Joan2517]

Poor Mia...our 17 or 18 year old Chihuahua is going through doggie dementia and it is so sad to see her so confused. We tried the Anipryl for a while and it did not help. She has been on Gabapentin for a while for arthritic/old age issues and we just started her on Galipent as well since she gets really restless at night...so far not seeing too much improvement. She still knows her Dad and just wants to sit with him all day, but getting her to eat is challenging. She won't eat her dogfood anymore unless I mix beef or chicken in it, but will scream for any kind of meat I am cooking for us. I wish I knew what to do to make things better for her, but I don't. We just roll with the punches and try to keep her as happy as we can...that's all we can do as furparents.

[Mia’s Momma]

Dear Marianne and Joan,
Thank you for the kind words. I’ve so appreciated the support from the wonderful people on this forum. I don’t know if Mia would’ve made it this long without it. I know we all do the best we can for our little ones, and I’m so glad we have this community to help us do that.
Take care and wishing you all the best too.

[Mia’s Momma]

Hello,
Since it’s November 1, I thought I would just send a little check-in update…with some happy news. Our resilient little fighter is still going strong, despite all the odds. Mia has been living with Cushings for two years now, and congestive heart failure for much of that time, and either macroedemas or dementia more recently. But her signs of confusion have abated lately and she’s not going around in circles/panting/digging, etc. She seems almost her happy sweet Mia self, with a good appetite and energy, though with lots of head bobbing. Grateful for every day with her, and for all the support on this forum.

[labblab]

Omigosh this is such good news, and *we’re* so grateful to *you* for returning to tell us!! Reading this has brightened my whole day!! Hopefully we were totally off the mark with the suggestion of the macro. But no matter what, this update is a joy to see.

Please give sweet Mia a ton of hugs from her family here, and continued best wishes to you all. :D:D:D:D

Marianne

[Mia’s Momma]

Omigosh this is such good news, and *we’re* so grateful to *you* for returning to tell us!! Reading this has brightened my whole day!! Hopefully we were totally off the mark with the suggestion of the macro. But no matter what, this update is a joy to see.

Please give sweet Mia a ton of hugs from her family here, and continued best wishes to you all. :D:D:D:D

Marianne

Thank you, Marianne! I don’t know how to account for it, but I’ll take the minor miracle for as long as it lasts! (I’m adding a recent picture of her to my profile; the contrast from the worse days of her CC is striking). Hope you’re well.