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Thread: Suni

  1. #91
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    Default Re: Suni

    I agree.....5mg is the most I would want to start with.

    Be prepared....Vetoryl/Trilostane is NOTHING like Lysodren. It works differently, the protocol is VERY different, and the dog's response is different....and the impact on your pocketbook can be dramatic because of the frequency of testing often required. So please don't hesitate to ask questions anytime something seems "off" or different or anything. It can be hard to wrap your head around the differences when you are used to using one or the other and need to switch. But I have full faith you will do just fine!
    "May you know that absence is full of tender presence and that nothing is ever lost or forgotten." John O'Donahue, "Eternal Echoes"

    Death is not a changing of worlds as most imagine, as much as the walls of this world infinitely expanding.

  2. #92
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    Default Re: Suni

    Leslie, you bring me to a question I want to ask and have put off for obvious reasons. What is your opinion of using Lysodren rather than vetoryl? Would it be
    easier on Suni? Is the loading phase the same as 13 years ago? I don't think I would have these questions if she was in otherwise good health. Scares the bejeebers out of me. What would you guys do given my circumstances, please!

  3. #93
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    Default Re: Suni

    Hi Shelba, obviously I’m not Leslie ;-), but I’ll go ahead and leap in with some of my own thoughts, as well. Leslie is indeed a strong supporter of Lysodren, and it will be good for her to tell you why. However, I’m going to go the opposite route and tell you why I’d be opting for Vetoryl in your situation. This way, you’ll have a greater reservoir of information about the treatment path ahead, and that’s always a good thing.

    In full disclosure, I only have personal experience with trilostane. Back in 2003 when Barkis was diagnosed, Vetoryl was not yet available in the U.S. and we were importing a human version of the medication, Modrenal. However, the active ingredient was also trilostane, so that’s how I’ll refer to the drug going forward. Anyway, the veterinary use of trilostane was first researched in the early 2000s, came into wider use worldwide around 2002-3, and received formal FDA approval here in the U.S. in 2009. So it’s now been in general use for 20 years and thus I would no longer consider it a “new” medication. Somewhat surprisingly, as Leslie notes, there are some question marks that still remain about the actual therapeutic mechanism and physiological effects on the adrenal glands, as well as the best way to monitor effectiveness via blood tests. That being said, it has overwhelmingly replaced Lysodren as being the medication of choice for most clinicians worldwide.

    I honestly cannot remember when we last had a member come to us with a dog being treated with Lysodren. I don’t even know whether brandname Lysodren is even readily available anymore, or whether compounded mitotane would be the likely option. So what accounts for the shift? I believe it’s the following. Both trilostane and Lysodren carry a risk for causing longterm adrenal dysfunction resulting in an Addison’s condition. However, I believe permanent Addison’s occurs more often in dogs being treated with Lysodren because its effectiveness hinges on actual erosion of adrenal tissue, and the degree of erosion can be hard for some owners to recognize and regulate. From your own experience with Misty, you know what’s involved with Lysodren loading. So you will know how easy or hard it may be to judge when the loading process is complete. With trilostane, there is no loading phase — you just start dosing daily and then monitor the results both visually and via blood testing. Just like with Lysodren, dogs taking trilostane can also be overdosed with too much suppression of adrenal function. However, the condition is generally more quickly and easily reversed with trilostane, simply by stopping the med for a time. Lysodren overdosing requires actual regeneration of adrenal tissue, and this may take longer time and for some dogs may never occur, resulting in permanent Addison’s. Permanent Addison’s can also result from trilostane, and unfortunately for reasons that are not clearly understood. But apparently it simply doesn’t occur as frequently. Thus, I believe trilostane is perceived by vets to be the safer of the two meds and the easier for novice Cushing’s owners to manipulate simply by raising or lowering the dose minus any loading phase.

    It’s true that trilostane users do commonly need to make dosage changes over time with associated testing, However, I’m less inclined than Leslie to think that Lysodren users are all that much better off in that regard. Historically, I think we had a number of members who had to reload their dogs over time or who had to go through multiple monitoring tests during lengthy loads or during recoveries from overloads. We’ve had folks using both treatments who’ve had easy times and those who’ve had harder times. Unfortunately, you just don’t know in advance how things will turn out for your own dog.

    For sure, trilostane is far from perfect. It is indeed bothersome that questions still remain about its affect on the adrenal glands and also the best course of monitoring. However, even with those questions remaining, it is now the treatment of choice for most clinicians worldwide because it is thought to be less likely to result in permanent Addison’s and is easier to manipulate quickly via dosing changes. Honestly, I think you’d have a hard time even finding a vet now who is experienced with using Lysodren.

    In Suni’s case, specifically, I’d prefer trilostane anyway due to her fragile state. I’d think it might be harder to evaluate the subtle changes associated with Lysodren loading and I’d want to lessen the risk of throwing her into lengthy or permanent Addison’s. Again, I’m not saying this can’t happen with trilostane. It can, and at any point in time and at any dose. But apparently it happens less frequently, and especially if lower initial dosing protocols are followed. By using trilostane, I’d feel more comfortable thinking I had a greater likelihood of reversing any ill effects more rapidly simply by lowering the dose or temporarily halting it altogether. So that’s my two cents worth. And as I say, it’ll be good to get Leslie’s alternative perspective, as well, so that you can gather as much info as possible beforehand. Plus — and perhaps most importantly — you have your own Lysodren experience to remember and evaluate.

  4. #94
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    Default Re: Suni

    Yes, I much prefer Lysodren to Vetoryl and have for years. When Squirt was first diagnosed, Vetoryl (or Trilostane as that was the only form that was available here in the US then) had just hit the market in the UK and I had watched dogs on cc.net get sick, very very sick, and worse over and over on Lysodren. So when my Sweet Bebe was diagnosed and ready to start treatment, I wanted her on Trilo not Lyso because Trilo was touted as safe.

    And that is one of my main problems with Vetoryl/Trilostane. It is touted as a safe, or sometimes more honestly a “safer”, alternative to Lysodren. This has lead to vets, and parents, becoming lackadaisical when it comes to dosing and monitoring treatment. Vets often completely ignore the very specific protocol that comes with Vetoryl and fly by the seat of their pants because this drug “can’t hurt the dog”….and yes, more than one person has reported this or similar from the vet treating their dog with Vetoryl. The nightmares I was seeing years ago with Lysodren when Squirt first started her journey are now magnified with Vetoryl because 1) the sheer number of dogs taking Vetoryl and 2) too many see it as “safe” or “safer” when Vetoryl has the exact same risk factors as Lysodren up to and including death.

    My next huge issue is with the company itself. When Vetoryl first hit the market the starting dose range was very high, MUCH higher than it is today, and dogs were getting sick and dying left and right. Dechra knew this but refused to change their literature for years. When they finally did lower the starting range, it was still too high and a great many dogs were still getting sick and worse. Dechra finally lowered that recommendation a little more….but not enough to keep dogs from getting sick. And this is the range at which the starting dose is presented today. The most current independent research has shown that larger dogs are typically more sensitive to Vetoryl for some reason and need a much smaller starting dose than the drug’s literature recommends. Dechra knows this. They do.not.care. They refuse to change their literature continuing to let vets use outdated information with which to treat their patients. Which means dogs are still getting very sick. Over the years, I have come to despise Dechra. In my opinion, and this is ONLY MY opinion, Dechra has been using our cush babies as a research project for over a decade now. This drug should never have been released when it was because too little was, and remains, unknown. Dechra does not give one single crap about any dog...they simply want to sell more and more Vetoryl, hence the reluctance to lower starting doses which would result in fewer sales. And they fight tooth and nail against Trilostane (compounded forms) because they lose money when we use Trilostane...NOT because Trilostane isn’t effective, but for money, period. THAT is all Dechra cares about. Yes, a company is supposed to make money but they are also supposed to be responsible especially when lives are at risk and in my opinion Dechra is anything but.

    With Lysodren we know exactly where it is working and exactly what it is doing in the body. It works on the adrenal glands, period. Vetoryl works on the HPA (hypothalamus, pituitary, adrenal) axis and a great many things happen on this loop, or axis, other than instructions for cortisol production and release.

    Studies have shown that Vetoryl/Trilostane causes increases in the intermediate, or sex, hormones that are involved in Atypical Cushing’s, (which has normal cortisol but elevations in 2 or more of the intermediate hormones). Lysodren is used to lower these same hormones and is very effective at that job with the possible exception of estradiol which can be produced outside the adrenal (and Lyso works only on the adrenal glands ). Those intermediates can cause some of the same signs as elevated cortisol. So while Vetoryl is lowering the cortisol it is often raising those intermediate hormones at the same time.

    Lysodren is a more stable drug than Vetoryl meaning once a pup is on maintenance they typically remain on that dose for the duration. Some Lyso pups do need increases over time but that is the exception, not the rule as it is with Vetoryl. With Vetoryl the cortisol can suddenly drop or increase even if the pup has been doing well on the same dose for some time...and I do mean suddenly. And it is often difficult to find the optimal dose when first starting out which means there is frequent testing…sometimes every 2 weeks for months at a time while the correct dose is found. And even then the level can change so much so fast that the testing protocol for Vetoryl is more frequent that with Lysodren. On Vetoryl the pup must have the ACTH test 2 weeks after starting treatment; the second test 30 days after starting treatment; and IF the cortisol level is good AND all signs are well controlled at this point, then every 3 months for the rest of the time the pup is on treatment. With every dose change, increase or decrease, this schedule is supposed to start all over at the 2 week mark. With Lyso there may be 2 or 3 tests during the loading phase to make sure the load has been achieved and again in 30 days and 90 days. Then if the dog is doing well testing can be stretched out to twice a year. Of course, the testing starts over with any dose change with Lysodren as well but that does not happen as often as it does with Vetoryl.

    There are a couple of positives in my mind about Vetoryl. It does have a very short life in the body, which is both a positive and a negative. The negative is this results in frequency dosing, daily or twice daily, so not only is the dog having to take more pills we have to buy more pills; the positive is - this means if something does go wrong Vetoryl is leaving the body much sooner than Lysodren can. Usually simply stopping the Vetoryl for a little while and then restarting on a lower dose will do the trick...no pred or other intervention needed with Vetoryl MOST of the time. Not always tho. With Lysodren it can take up to 48 hours for the drug to clear the body meaning Prednisone is a necessity when using Lyso should a problem arise. With either drug, any sign the cortisol is going too low is critical and requires immediate attention...but especially so with Lyso. Another positive is the availability of Vetoryl compared to Lysodren currently. From time to time it has become difficult to find Lysodren but Mitotane, the compounded form, is readily available. Another positive is that due to Dechra’s marketing of Vetoryl, more vets are familiar with Vetoryl than they are Lysodren these days and this is often the deciding factor as to which drug to choose…which one does your vet have the most experience with and the most success with?

    Bear in mind, much of my feelings about Vetoryl VS Lysodren stem from working on the FB groups. There are over 30,000 combined members and the vast majority of them are using Vetoryl…and I see dogs on Vetoryl dying every single day primarily for the exact same reasons dogs were dying from Lysodren all those years ago…arrogant vets who think they know everything, refusing to listen or learn, and uneducated parents. My personal experience is limited to Lysodren. Thankfully, Squirt's vet had never heard of Trilostane and I wasn't too keen on possible issues with getting it in from the UK so we went with Lysodren. For me, I will always choose Lysodren over Vetoryl UNLESS the dog has adrenal based Cushing’s then Vetoryl is usually the best choice simply because of the increasing doses needed to keep control with ADH.

    You must do what you are most comfortable with. You know your precious girl best of all and know her vet best of all. I have no doubt that you will be a great mom just as you always have been regardless of the treatment path Suni is traveling.

    Hugs,
    Leslie
    "May you know that absence is full of tender presence and that nothing is ever lost or forgotten." John O'Donahue, "Eternal Echoes"

    Death is not a changing of worlds as most imagine, as much as the walls of this world infinitely expanding.

  5. #95
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    Default Re: Suni

    Oh my word!! you two are the most informative folks I have the honor of knowing!! This information is so valuable for me to sort through. If we indeed do decide to go forward with treatment, I do believe with these two posts alone, I can make the best possible choice for Suni.

    One more question, if we do choose Vetoryl, can I start off at half of the lowest dose available? Is compounding terribly expensive? I am no longer working
    and on a fixed income, so finances would or could be an issue.

    Throw any advice and info you have at me. I need it!!!!

  6. #96
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    Default Re: Suni

    If you do opt to treat with the chemical, trilostane, the smallest available brandname Vetoryl capsule is 5 mg. Since Suni weighs 12 pounds, that dose given once daily would represent less than .5 mg. per pound. The lowest generally recommended formula is 1 mg. per pound, although some specialists feel even more comfortable with a formula of .5 mg. per pound. So either way, the 5 mg. capsule would already be less than half of the more commonly recommended formula, and also would conform with the advice of those specialists who prefer to start even lower.

    If you want to start even lower than that, though, you would need to have a custom dose compounded. In that event, the good news is that compounded trilostane products are typically significantly less expensive than Vetoryl. So financially, compounding should not present a problem for you if that's the route you and your vet decide to go.

  7. #97
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    Default Re: Suni

    I agree...the 5mg Vetoryl capsule would be half the lowest starting dose so this would be a good place to start. Liquid Trilostane has several advantages tho....it is very easy to give as all you have to do is drop the med into the food, and it is very easy to adjust any dose changes without having to purchase a new 'script. For example, a liquid Trilo might say 50mg per ml so you can easily calculate any dose changes, up or down, using that 50mg/ml. If you need 10mg you would give 1/5 of a ml or 0.5cc, 5mg would be 0.25cc and so on. The liquid Trilostane is the easiest for the dog and the most cost efficient way to go in my mind.
    "May you know that absence is full of tender presence and that nothing is ever lost or forgotten." John O'Donahue, "Eternal Echoes"

    Death is not a changing of worlds as most imagine, as much as the walls of this world infinitely expanding.

  8. #98
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    Default Re: Suni

    I like the liquid idea better for a few reasons. Suni has taken so much medicine the past year that she is beginning to be a pain giving pills. She always, before, would take anything I gave her, but has become a bit rebellious for a few months. I am afraid the capsule would be a bigger challenge than I could successfully manage. And even if we started at the 5 mgs, it could still be compounded, right? So, I am really glad to learn all this. Thanks again ladies.

  9. #99
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    Default Re: Suni

    Theoretically, here in the U.S. it is illegal for compounders to duplicate products that are available in a brand form. This means that compounded trilostane capsules in dosage strengths of 5, 10, 30, 60, and 120 mg. are not permitted in the U.S. since those are the Vetoryl doses manufactured by Dechra. I’m not sure if this extends to compounded trilostane in other “solid” forms such as pills or chewable tablets (which also exist). You’d have to check with the compounder about that. So in other words, you could get a compounded trilostane capsule in 4 or 6 mg., but not in 5 mg. Other countries may not have the same prohibition, but this is the case in the U.S. You’re right, though, that with a liquid suspension, there’s no problem at all in this regard because you get the whole bottle of liquid and then just parcel it out in whatever amount your vet prescribes.

    I do want to again voice a personal caution, though, about compounded formulations and especially liquid suspensions. I certainly understand the attractiveness of a liquid. However, 5 mg. of trilostane that’s ingested via a liquid that’s syringed or chewed after being added to food may be metabolized differently than a powder that reaches the stomach intact within a capsule. All of the original clinical trials that went into FDA authorization were based on medication delivery via capsule, and 5 mg. via liquid (or compounded chewable pill) may be metabolized differently (with different effectiveness) than 5 mg. protected by capsule en route to the stomach. In reality, this may not actually present any problem at all in the case of trilostane. But this is why I personally would feel more comfortable starting my dog on a genuine Vetoryl capsule if I could afford it and my dog would swallow it. I would like to know whether my dog improved without side effects taking the established researched product. If so, and then if there were immediately problems after switching to a compound, I’d be more suspicious that there was some sort of a problem with the specific compounded formulation I was using as opposed to trilostane itself just not working well for my dog.

    For instance, back in the old days when we were much busier here, it seemed to me that we encountered more issues with dogs who were using liquid formulations — cortisol levels that were more erratic and difficult to control. This is solely my personal impression and not based on any actual comparative studies or anything. But I always wondered whether maybe the trilostane wasn’t evenly distributed throughout the suspension, or consistently measuring out the liquid was hard, or the suspension itself had gone bad, or the chemical just wasn’t as effective if absorption started out in the mouth or throat. I can’t argue with Leslie about many of her criticisms of Dechra, but I figure (perhaps naively…) that if the Vetoryl box is marked 5 mg. per capsule, at least that’s the exact dose my dog is getting. And also without any absorption occurring until the powder is released in the stomach.

    Now if Suni (or any other dog) can’t or won’t swallow a capsule, then all bets are off, and we’re very grateful that a liquid formulation exists as a possibility. Or again, if a dog needs a customized dosage for a solid pill or capsule, then compounding is the solution. But I just wanted to explain more fully why I personally continue to advocate for the use of Vetoryl when first starting off if it’s a viable option. And now that I’ve *fully* beaten that dead horse, I’ll shut up about it ;-))))). Whatever you and your vet decide is the best route to go, I’ll be supporting you 100%!

  10. #100
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    Default Re: Suni

    Lena got very suspicious of anything I fed her after she started Vetoryl and I had to get creative, but Gabe was so easy. He ate anything and never noticed a pill or two or three in it. I was very lucky with him.
    Joan, mom to my Angel Lena, Angel Gable, Angel Phoenix, Doree, Cooper, and now Sibble.

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