REMY diagnosed last week

[labblab]

OK, everybody, we’ve got Claire set back up over on K9D. So if anybody wants to monitor Remy’s journey over there, as well, here’s a link to the thread:

https://k9diabetes.com/forum/forum/d...nosed-diabetes

And Claire, of course you’re always welcome to continue posting here, too ;-)))

[Remy’s Mom]

Thanks for all your help. Since Remy’s problems are both Cushings related and unregulated diabetes I need help from all fronts! This morning is the first time in a week he has down into a normal glue range. He ran above 400 from 5 PM yesterday to 5 AM this morning and suddenly went down. So at least we know he still responds to insulin. Tomorrow we will see the Internist and I think he should check Remy’s cortisol level to see if it’s gone back up above normal or not. He has been off the Vetoryl (trilostane) for about three weeks now. He seems to be very sensitive to it so IF it’s decided he needs to go back on and we know 5 mg is too much for him even every other day, what is the alternative? Mixed opinions on a compounded liquid from what I have read. As far as symptoms, Remy has never had much in the way of Cush symptoms. I’d be very happy for advice here!!

[labblab]

I really do endorse the idea of re-checking Remy’s cortisol. And if the decision is made to restart treatment, I really don’t see how you have a reasonable alternative other than shifting to a compounded product. In general, I personally endorse using brandname Vetoryl if that is “do-able” for the reason given in my quote below. I recently posted this on another member’s thread, so you may have seen it already. But I’ll go ahead and repeat it here.

…over our years here, I think there are few issues that have generated more discussion than the question of brandname meds vs. compounded alternatives. People have had, and probably continue to have, differing opinions. I’ve certainly come to appreciate the fact that compounded trilostane can be a positive game-changer for folks, either because their dogs need doses that aren’t available in brand form, or because the high cost of Vetoryl would make treatment a huge financial burden, or because their dogs simply won’t take pills in a conventional form. However, the downside is that compounded products are not inspected nor regulated in the same manner as FDA-approved pharmaceutical products, and as Marissa has pointed out above, some past studies have shown some dosage/efficacy irregularities in certain compounded trilostane products. So that remains somewhat of a worry to me. And for this reason, I think the reputation of any given compounder is especially important to investigate. On the thread below, we give people some tips in that regard:

https://www.k9cushings.com/forum/sho...ushingoid-Dogs

If Remy’s cortisol is elevated again, then I think turning to compounding is your only viable option — especially as opposed to giving a higher dose on a less than daily basis. As Leslie has discussed earlier, you really want to keep cortisol levels continually as consistent as possible for all Cushpups. But for diabetic dogs, we’ve been told this is especially important. Even to the extent of preferably dosing diabetic dogs twice daily, when that is feasible. Given Remy’s apparent sensitivity to trilostane, once daily dosing probably remains the most likely option. So that would mean less than 5 mg. daily. And that means necessarily switching to a compound.

Even though a compounded liquid would be the easiest route to go, I’m personally not a big fan of trilostane in liquid form. My opinion is not based on any research or professional guidance. But again, over our years here, it just seems to me that we’ve seen more dogs experience unpredictable results on liquid compounds rather than solid compounds of trilostane. Solids do offer far less flexibility. But heck, in Remy’s case you could probably even get an initial batch of compounded pills or capsules in 1 mg. dosages. Presumably a compounder could make it that small. That way you’d have total control over dosage changes. So that’s likely the direction I’d try to go myself if Remy’s cortisol is up again. But again, other folks feel differently about liquids and that would also remain an option.

Definitely good luck tomorrow, and let us know what you find out as soon as you can.

[labblab]

And P.S., I went ahead and copied our conversation here into your K9D thread so folks over there will know where things stand with Remy’s Cushing’s.

[Remy’s Mom]

Thank you so much. The diabetes is a big problem for us especially for me as far as my stress levels (LOL) but despite all our efforts we have not been able to obtain and sustain regularity for him. We thought he was well regulated as far as the Cushings until Christmas when we learned he was now very low. The endocrinologist kind of raised her eyebrows at how long he has been on Vetoryl. We did have an ultrasound done a week ago and his adrenals appear normal and are the same size as six years ago. I might be wrong but I was under the impression that even with pituitary Cushings there would usually be some changes to the adrenals. I will let you know what we find out tomorrow!!

[labblab]

I sure do understand your stress! I’m a champion worrier, myself, and especially over health-related stuff related to furbabies. If *only* they could talk to us and tell us how they’re feeling!

And I really hope you’ll start getting some replies over on K9D. Both their traffic and our traffic has really slowed down these past couple of years as the Facebook groups have become more popular. But hopefully you’ll get some feedback over there soon.

[Remy’s Mom]

Internist sent out a cortisol test for Remy. Hopefully have the results back in a day or so. His glucose curve has been pretty good since we opened a new bottle of insulin. Interestingly his primary care called me today and when I mentioned it he said one of their vet techs had the same experience recently so it’s possible they had a shipment that got too warm during shipping. Meanwhile he is going to give me a Rx for a rapid acting insulin for those times when Remy is uncomfortably high.I should know more when the test results come back in. He did mention compounded trilostane and the controversy about the product. He has a vet friend who has a dog very sensitive to storyline and only gets it once a week which goes against conventional thinking. At this point we don’t even know if Remy will need it. Will keep you updated as I learn more. Thanks for all the encouragement and advice!

[Remy’s Mom]

Everything has changed this past week. We had Remy in for a baseline cortisol recheck and I also asked for an abdominal ultrasound. Got the results Thursday. Cortisol was 6.09 ug/L which would be 168 nmol/L. This was not an ACTH test just a baseline to see if he had recovered from low cortisol since he stopped Vetoryl February 17. Internist recommends we not treat until we see symptoms of Cushings. We know cortisol affects his diabetes and the past few days we had a nice curve going through Wednesday. Now he is trending back to the Vetsulin not lasting long enough.

The big change though is the ultrashowed Remy had transitional cell carcinoma (bladder cancer) so although at the present he is not showing symptoms we know the tumor produces inflammation and this adds yet another dimension to things. At the moment this is my biggest concern because we don’t know how long it has been there or how aggressive it is. I think it is fairly recent. So the question is whether or not to treat it and how treatment will affect all his other issues. I cannot believe Remy is the third dog I have had with TCC! We don’t smoke, don’t use chemicals to clean floors (I just steam them) don’t allow pesticides or herbicides in the ‘dog areas’ of the yard. He hardly goes out except to potty and right back in the house. We are dumbfounded as to how this can be. I don’t use pest control in the house at all which is very common here in south Louisiana. I put up with a few bugs rather than risk my pups. And yet here we are again. Bichons are one of the more susceptible breeds but still it was a shock to learn my fears were confirmed. More decisions to make. Unfortunately I don’t see much in the way of new treatments since my last TCC dog a couple of years ago. Given Remy’s stress levels even deciding where to go for treatment is a decision. I suspect his cortisol level is rising but since 5 mg every other day was too much my options are limited on the Vetoryl. As the cortisol level rises so does his glucose. I’m not sure there are answers anymore for us.

[labblab]

Oh my goodness. Claire, I'm so sorry to read this news. I agree, it's unbelievable that you would have three dogs diagnosed with this form of cancer. And yes, it certainly further complicates an already very complicated situation :-((((. From the standpoint of Remy's cortisol, it's good to know that his adrenal function doesn't appear to be oversuppressed. So that is worthwhile information from the baseline cortisol. However, even if nothing else was at play, I wouldn't feel comfortable starting back with the Vetoryl until a complete ACTH was performed. Random baseline cortisols can vary markedly throughout the day even in normal dogs depending upon stress level, etc. For dogs being treated with Vetoryl, we've been told a random baseline cortisol can reassure that cortisol isn't dropping too low, but otherwise shouldn't be used for dosing decisions. And now, with this new diagnosis in hand, restarting Vetoryl at any level would seemingly present a lot of question marks. For instance, it could be that the cancer itself is stressing Remy's adrenal system right now as opposed to Cushing's. And even though we know higher cortisol can also elevate the glucose readings, maybe a higher level of circulating hormone may have a beneficial anti-infammatory effect on the cancer? I have no idea about that part of things.

I guess (hope!) an oncologist might have better guidance about the path forward. I just hate it that you and your husband and Remy have this additional huge worry. Even if you don't decide to start back on the Vetoryl now or ever, please keep us updated, OK? I continue to send you all my healing wishes.

Marianne

[Remy’s Mom]

Thank you so much Marianne for the support. It definitely makes things more difficult. Now I don’t know if he’s fussy because he is becoming painful, high glucose, Cushings or ‘who knows’ at this point. His glucose was looking pretty good just a couple of days ago, now it’s running high again.Just to come up with an appropriate dose if we wanted to restart Vetoryl would be difficult because we know 5 mg every other day was way too much for him.And we can’t know how much the tumor is affecting things. When we did the baseline cortisol he seemed stable on the insulin and we didn’t know about the the TCC. Now everything changes. And I am torn between pursuing treatment because of his personality and how he is always so stressed with anything new. Being left for six hours of chemotherapy treatment would be very hard for him. First we have to see an oncologist and see what our options would be. Today he is already high glucose at 6 Pm. He was doing pretty well until the last couple of days. I can’t even seem to get one of his issues resolved. Monday I will see if we can get scheduled with an oncologist and go from there. I’ll keep you posted and thanks again!