Help!

[Melissa456]

Hello,

I can not say how happy I am to have found this amazing forum. My dog Fluppy has just been diagnosed with cushings. I am such a mess as he is my everything. Fluppy is 13 he was my Dads dog and when my Dad passed away 7 years ago I got him. He just started Vetoryl 30mg. He weighs 18.5 pounds. Today is his second day on the medication and he was shaking or trembling for maybe 5 or 10 minutes earlier. It has now stopped but I'm wondering if this is a side effect of the medication. I called his vet and he said it could be but he is not sure. I am so worried and so scared and don't know much at all about cushings. Any advice is super appreciated!!

[labblab]

Hello, Melissa, and welcome to you and Fluppy! I’ve just now approved your new membership, so you should be able to post freely on the forum, now. We’re so glad you’ve found us, and we surely understand how worried you’re feeling right now — and we’ll do our best to help!

I’ll start off by jumping directly to the bottom line: I’m concerned that this beginning dose of Vetoryl is too high for Fluppy, and that his trembling could indeed be the result. When Vetoryl was first introduced as a Cushing’s treatment, the recommended starting doses were higher than they are now. Perhaps your vet is still abiding by these older recommendations, but I’m going to provide you with some newer information that I encourage you to discuss with your vet today. The current initial dosing recommendation for a dog of Fluppy’s weight made by specialists, researchers, and even the maker of Vetoryl is to not exceed a formula of 1 mg. per pound per day. So in Fluppy’s case, the 30 mg. capsule exceeds this recommendation. Likely a safer starting dose would be a combination of one 10 mg. and one 5 mg. capsule, or two 10 mg. capsules if that would be easier. I’m going to give you two links below that better explain this recommendation, as well as treatment with Vetoryl, in general:

https://www.k9cushings.com/forum/showthread.php?185-Trilostane-Vetoryl-Information-and-Resources&p=1251#post1251

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

It may be the case that Fluppy may ultimately need a dose as high as the 30 mg. But the risk of him experiencing unwanted side effects or even overdosing will be minimized if you start at a lower dose and work upwards. If he were my own dog, I would not give him any more Vetoryl until you can speak to your vet and request a lower starting dose.

Also, it will help us a lot if you can tell us more about the symptoms and testing that led to the Cushing’s diagnosis. It can definitely be a difficult disease to pin down, and any additional background info that you can supply us with will give us a better framework for our suggestions moving forward.

I’ll go ahead and close for now, but once again, welcome to you both!
Marianne

[Melissa456]

My replies don't seem to be working.

[Melissa456]

Fluppy has all the signs of Cushings. Drinking and peeing a lot, hair loss, muscle loss in hind legs and head and an extreme appetite. He had the dexamethasone suppression test and tested positive for cushings. I spoke with the vet yesterday and asked if he could have been given to high of a dose and he told me he is dosed appropriately. He said the next lower dosage is 10mg and said that wouldn't be enough for Fluppy. He has a shaking incident yesterday then seemed completely fine until this morning after he had the med. He was falling over not able to stand for a few moments then he pooped and could stand again and shook for maybe 5 mins and is now fine again. I'm not sure if he is shaking from the medication or if it is hurting his stomach which is causing him to shake.

[labblab]

I spoke with the vet yesterday and asked if he could have been given to high of a dose and he told me he is dosed appropriately. He said the next lower dosage is 10mg and said that wouldn't be enough for Fluppy.
Thanks so much for this additional info, and I’m able to see both of the replies that you posted so I hope things seem straightened out to you now, too. Just let us know if not.

Turning back to the dosing, you need to know that I’m not a vet myself and I hate to sound critical of your own vet. But what he has told you really doesn’t make sense to me. Vetoryl capsules are available in doses of 5 mg., 10 mg., 30 mg., 60 mg. and 120 mg. The availability of so many different strengths is so that capsules can be given alone or instead *combined* in order to provide a dosing total that’s appropriate for dogs of differing weights and metabolisms. The downside of combining capsules is expense. For instance, giving two 10 mg. capsules daily instead of one 30 mg. capsule will likely be more costly. But it makes no sense for your vet to rule out options for you other than a single 30 mg. capsule. As I wrote earlier, you could give Fluppy either two 10 mg. capsules daily (for a total of 20 mg.), or you could give one 10 mg. capsule and one 5 mg. capsule for a daily total of 15 mg. With either of these options, giving Fluppy (who weighs 18 pounds) either 20 mg. or 15 mg. would correspond much more closely to the 1 mg. per pound formula.

The fact that your vet is ignoring these dosing options is a concern to me, and makes me wonder how much experience he may have with Cushing’s. Cushing’s can be a challenging disease to diagnose and manage, and not all general practice vets have had a lot of experience in this regard. Sometimes a referral to a more specialized vet can be very helpful during the initial stages of treatment. We can talk about that some more if you’re interested. Either way, though, please continue to let us know how he’s doing. And remember, you can always temporarily discontinue the medication if he continues to seem unwell. Also, has your vet already set up an appointment with you to return for monitoring blood work — that’s also a very important part of the treatment protocol.

Marianne

[Melissa456]

I spoke with the vet again today and he wants me to split the powder from the 30mg capsules in half and try him in that. I told him I don't feel comfortable doing that but he said its fine as long as I wear gloves. I have spent every penny I have thousands of dollars just to have Fluppy diagnosed. Many visits, lab work, ultrasounds, tests. I lost my job due to Covid and I have nothing left. I am in Canada and he said that we only have 10mg, 30mg, and 60mg. I just paid $100 for the 30mg capsules and he said it will cost another $150 for 2x 10mg. So he wants me to split the pills. I asked if that would give him uneven dosages and he said it would be fine. I also asked if he was used to treating dogs with cushings and he said he has treated dozens of them. I am at a loss I have no idea what to do. I love my dog so very much and want to do what is best for him. I'm not sure how to do that. I can't afford a specialist or any other vet. I feel like such a bad dog Mom!!!!!

[labblab]

Omigoodness, you are being a wonderful mom!!! In my opinion, it’s your vet who is mucking things up and making an already stressful time even more difficult for you :mad:. As far as opening the capsules, *you* are the one who is right — the maker of Vetoryl specifically warns people against doing that very thing so as to avoid human exposure to the base chemical. It can irritate the skin and eyes, and also may cause birth defects if a pregnant woman is exposed. Yes, wearing gloves should theoretically offer protection. But even aside from the human exposure, the manufacturer has warned us that the medication may not be divided evenly or metabolized as efficiently if it is not delivered to the stomach intact in capsule form. The bottom line is that your vet should not have prescribed the 30 mg. capsules in the first place, and now he’s asking you to jump through hoops and ignore warnings in order to accommodate his error. It’s always safer to underdose than to overdose if a choice needs to be made, and if he directly sold you the Vetoryl, he ought to take back the 30 mg. capsules and replace them for you with 10 mg. capsules! A single 10 mg. capsule would be a much safer place to start than a single 30 mg. capsule.

But here we are, and I’m trying to think what I would do in your shoes. If there’s no hope of swapping out the capsules and you could afford at least one box of 10 mg. capsules, I believe I’d buy that and start him off with one capsule a day (remember, underdosing is safer than overdosing). You can then hold the 30 mg. capsules in reserve for future use if he ends up needing a bigger dose.

But I’m honestly feeling more concerned after reading your description of what happened today — that he fell over, pooped, and then was shaking. That almost sounds like a seizure to me. If so, that may or may not be related to the medication. And either way, giving him more Vetoryl in any form right now may not be a good idea until you see what develops with these episodes. We’ve had several occasions in the past when members described unexplained shivering or shaking episodes in their Cushpups, both before and after starting treatment. But your description of Fluppy falling over and losing control of his bowels is a more severe reaction, and as I say, sounds more like a seizure to me. I’ve had a dog with epilepsy, and I witnessed episodes similar to what you’re describing, so that’s what makes me wonder.

So as a final bottom line, I’d be inclined to hold off on giving Fluppy any more Vetoryl at all for the next couple of days, in order to see whether these episodes continue. If they stop but then reappear if you restart the Vetoryl, then for sure a medication side effect would seem more likely. If they continue even in the absence of taking the Vetoryl, then we’d have to suspect something else may be the cause. And that information will likely be important to know. Just my two cents worth about everything! (And once again, you’re a wonderful mom!!!)

Marianne

[labblab]

I’m back again this morning with a couple more thoughts to add. Once again, I feel badly that I’m being critical of your vet, but you’ve come to us with your sincere questions and I want to give you my honest feedback. I was surprised by your vet’s statement that only three dosages of Vetoryl are available in Canada, so I’ve just now checked Dechra’s website for its Canadian authorizations, and all five dosage levels are listed there (5 mg., 10 mg., 30 mg., 60 mg., 120 mg.).

https://www.dechra.ca/?geo=CA#/search=Vetoryl/

So then I thought, OK, maybe they’re all technically approved in Canada but they’re not all currently available. However, I’ve just now Googled Canadian internet pharmacies and found several that are listing the full capsule range as being in stock, including the 5 mg. capsule that I was talking about earlier. Here’s an example:

https://www.petsdrugmart.ca/Product/Vetoryl-1153480/3571

So I don’t understand why he’s telling you that the Canadian supply is limited. If he directly sold you the Vetoryl, perhaps his own distributor doesn’t have access to the other dosage strengths. From what I’m seeing online, the pricing he’s been quoting you for the 10 and 30 mg. strengths is competitive, so at least that’s good. But it’s frustrating if he’s ruling out the 5 mg. strength, for instance, if it’s truly available in Canada.

Secondly, I want to clarify why I’m bothered by him saying that less than the 30 mg. wouldn’t be “enough” for Fluppy. Initial dosing for any dog is honestly a crapshoot due to wide individual variation in terms of how dogs metabolize the medication. The formula of 1 mg. per pound is just a starting point, and blood testing within two weeks of starting (or 30 days at a maximum) is necessary in order to judge whether that initial dose is too high or too low. Combined with observation of symptom resolution, the blood work is an important indicator of the medication’s effect on a dog’s adrenal function, and subsequent dosage changes are common as a result. There is huge variability in how dogs respond to Vetoryl. We’ve had very large dogs who require no more than 5 mg. daily, and very small dogs who require significantly higher doses. You just don’t know in advance. But that’s why it’s always safer to start on the lower side and work upward if needed, rather than vice versa. And that’s why, if you’re limited to giving only one capsule daily, a 10 mg. capsule would seem to me to be a safer starting point than 30 mg. for a dog weighing 18 pounds. You can always work upward if necessary.

So there you have it in terms of my own thinking. If this vet is your best or only option right now, then you’ll indeed have to find a way to work together with him. But I do want you to be armed with as complete a background picture as I can provide, in terms of advocating for the healthiest options for Fluppy.

Marianne

[AmySpitz]

Hello Melissa, this is actually my first ever post on this forum as I felt compelled to say a few things after reading your thread. I have actually spent months looking through this forum as it's a tremendously valuable resource for owners with dogs dealing with cushings. My dog Amy was diagnosed with Cushing's via ACTH stim test in Feb, though I have suspected she has had it since at least 2019 when she started showing elevated liver enzymes, though a low dose dexamethasone suppression test at the time came back negative then, I was not familiar with the disease and my vet didn't really push to have it investigated further.

Anyways back to my point... Amy is also on Vetoryl, she will be 13 next month and weighs ~10.8kg = ~23.80lbs. The recommended starting dose is 2.2mg vetoryl/trilostane per 1kg of body weight or 1mg per 1lb. However to be cautious I started her on 5mg twice daily (10mg total daily) and have now slowly worked up to 10mg twice daily (20mg total daily), with ACTH stim test performed 2 weeks after each dose change.

Fluppy is 18.5lbs so I have no idea how your vet arrived at starting him on 30mg. Honestly... I really believe from reading others stories and my own experience that pet owners are usually more knowledgable about the illness/disease their pets have than a lot of vets. Now this is only my opinion but from all my reseach I have done for Amy, the shaking and weakness Fluppy is experiencing is very worrisome and is indicative of hypoadrenocorticism (Addison's) which is the opposite of Cushings. The 30mg most likely is way too much for him and his cortisol is being overly suppressed.

Personally I would've started him on 10mg total daily as he's similar in weight to Amy, had an ACTH stim test performed in 2 weeks and depending on the result either increase it to 15mg or 20mg total daily if 10mg wasn't sufficient.

Also I have no idea why your vet has told you Vetoryl is only available in 10mg, 30mg, and 60mg in Canada. A quick google search showed me it's available in 5mg, 10mg, 30mg, 60mg, 120mg over there. Please also be aware you don't HAVE to get it through him. You just need a pet rx and you can buy it online from a pet pharmacy that carries it, this can often work out a lot cheaper. The fact that he's advising you to open the capsule on a classified hazardous drug just says a lot about the vet. He SHOULD know that even with all the safety precautions, even if you managed to equally split the visible powder in half, that doesn't mean the active ingredients have been split evenly.

I really hope Fluppy starts feeling better soon! This disease is very manageable once you find the appropriate treatment dose.

[Squirt's Mom]

Hi Melissa,

Unlike Marianne, I do not in the least feel badly about being critical of your vet. Simply because I have been a cyber witness to more dogs than I care to remember who died from arrogant vets who refuse to listen to facts over the years that I have been working in forums and groups like this one. Arrogant vets who will not listen are the biggest risk factor in this disease...not the disease itself nor the treatments but vets who refuse to listen to facts pose the greatest risk to our cush babies. We here are NOT professionals in the veterinary field yet we know more than this vet, and many others for that matter, do about this disease and the treatments for it. What we know is readily available to vets everywhere so the things we present to parents of cush pups are not secrets at all. But we have taken the time to stay up on developments in this area...and some vets just don't take the time to do that. Granted they do have a lot more to deal with than we do...all we do is Cushings and related illnesses/conditions. Yet for a vet to turn a blind eye to new-to-them information is inexcusable. You unfortunately have one of those arrogant, dangerous vets and in your shoes I would get Fluppy's records from this office and run, not walk, RUN from them and never return.

You are not a bad mom at all...you have taken the time to learn what is recommended and what SHOULD be done with your baby and you are speaking up for Fluppy. Our babies cannot speak for themselves so it is up to us to speak for them and you are doing an excellent job of this! The ability and willingness to speak to vets as you have is the greatest advantage in this disease any dog could ask for. Fluppy is a very lucky guy.

This medication needs to be stopped until you find a vet who will work with you and listen to you. It is infinitely better to flat not treat Cushing's than to give a dose that is life-threatenting...and an overdose on these meds always presents possibilities we do not want to contemplate. High cortisol causes some problems but, barring one of the rare complications of Cushing's, the dog can live a long time untreated. But they will have a very short life if an overdose of medication continues. In the literature these dangerous vets often claim to refer to it PLAINLY states to start at the lowest dose possible. What you have described fits an overdose without question. Unfortunately, Vetoryl is not stable nor does every dog react the same to it. Some dogs are extremely sensitive to this drug and it may be that Fluppy is one of them and will need a very low dose to start so he has a chance to adapt if he can. Some dogs simply cannot take Vetoryl and have to switch to Lysodren IF available (it is not available in all countries). But those are considerations on down the road. Right now it is imperative that you stop the med and let Fluppy's adrenal glands recuperate before they are permanently impacted.

While name brand Vetoryl may be limited at the moment compounded meds should be available. This is a process where the active ingredient in Vetoryl, called Trilostane, is used to make medication doses and forms that Vetoryl doesn't come in. This means that a dog can get just about ANY dose needed and in any form needed. So Fluppy could have Trilostane in an 8mg chewable tablet or in a liquid form that is very easy to work with when it comes to dose changes (often saving the need for a new prescription) and easy to give. So there ARE other options your vet is also ignoring.

I completely empathize with your situation...I am in a similar place myself and just had a dog diagnosed with Diabetes Insipidus, a rare form of diabetes that has to do with how the body processes water and nothing to do with blood sugars. It took every penny in my saving account for this diagnosis and his first round of meds. From here, it is going to get very tough for us. So I DO understand where you are coming from with the cost. But I again say, find another vet that will work with you and simply don't treat in the meantime. YOU will be the one who is more than likely most impacted by not treating for a bit unless you have trained Fluppy to clean up after himself and let himself out when needed...that has not worked in my home. :D Meanwhile I want to share some links with you that may be able to help financially.

A fund devoted solely to Canine Cushing's:
http://www.tipper-squirtcushingfund.org/

A list of other sources that may be be able to help:
http://www.tipper-squirtcushingfund.org/other-sources-of-aid.html

Croudsourcing sites like GoFundMe may be able to provide an avenue for assistance as well from friends, family, and complete strangers who donate to help Fluppy. You might be surprised at how many people want to help others when possible.

I am so glad you and Fluppy have joined our little family here and I want you to know you will never be alone on this journey. All you need to do is reach out and we will be here. We DO understand where you are coming from because we have walked in your shoes, some of us more than once. And we DO care about you and your precious Fluppy.

Hugs,
Leslie