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Thread: Introducing Fraser - our sweet Fraser has crossed The Bridge

  1. #1
    Join Date
    Nov 2012
    Location
    West Australia
    Posts
    464

    Unhappy Introducing Fraser - our sweet Fraser has crossed The Bridge

    Hi Everyone, I'm just going to start with an introduction for myself and Fraser and give you all a bit of the back story. His official Diagnosis of Cushing's was just over 2 weeks ago, and he has now been on Trilostane for 2 weeks exactly. Before I go any further, so far so good! (by the way, now that I get to the end of the post, it turned out to be a long one! Sorry)

    Anyway, so the questions started about 2 1/2 months ago. I took both of my boys (he has a brother - Oscar) to the vet to have their teeth cleaned. Because of their age Fraser 13, Oscar 12 1/2) they underwent pre anaesthetic blood tests just in case. Osca'rs came back fine but Fraser had some elevated levels. The Vet said to me it could be a freak result, nerves etc, or just ageing, but that we would test again in a month to be sure. Meanwhile be on the lookout for signs of Cushing's or Thyroid. So off I went, did some reading to find out what the different symptoms were for both (they gave me a brief run down, but I like specifics) and the observations began.

    Meranwhile, 1 week later, Oscar decides to jump off a wall at the park and ruptured his cruciate ligaments in his right back knee. Surgery for him, complete 100% rupture. Due to the treatment required for Oscar (not to mention the price) Fraser's tests got put off a little longer than planned. Meanwhile, I had been watching him closely anyway, and in my mind he was showing classic signs of cushiness. Pot Belly got a little rounder (he has always had a slight pot), drinking more, eating alot (didn't realise at the time he was actually eating half of Ozzie's as well!) and then the skin infections started. Again he has always had flaky skin on his belly, but almost overnight it got worse and little puss spots started that would then turn scabby, the skin would pigment and then peel off in great clumps. I also noticed that his muscle tone had shifted a little around his legs. Now the good news is, he didn't lose any hair (I have one partially bald boy at this point anyway due to surgery, didn't want another!) and his legs didn't seem to be significantly weaker. He can still jump into the car and chase his ball.

    I do remember saying to my sister about six months ago that he had suddenly got old - which I now know is a common thing and why so many don't spot this right away - but his mood hasn't changed, he is still a velcro dog (wants to be with you 24/7 and follows me everywhere - even to the bathroom!) he chases his ball at the park, demands his daily walk etc. So it was only the physical symptoms that had it in my mind.

    Anyway, so after my wallet recovered a little, I took Fraser back to the vet to run another blood test on him. This was just an inhouse test, to see if those initial results were a fluke or not. As expected, results came back high, much higher again that last time. So next we ran a full blood screen and sent it to an outside lab for deeper screening. Results came back high and liver enzymes were elevated this time too. Vet wanted to do an ultrasound at this point and then the LDDST - honestly at this point I couldn't afford both so we went straight to the LDDST. Results came back - yep, definitely cushingoid.

    Now after reading many threads here over the past few weeks (OMG some amazing superheros on this site! Seriously strong people here) I know many of you are sitting there saying "What were the numbers". I don't actually have copies of them - yes I will rectify this and get them - but I can't answer that for you at the moment. I have learnt already to ask for copies, just in case of emergency if nothing else, so will make sure I get that next time.

    Anyway, we ordered medications - Trilostane - and guess what, only avalable in quantity of 100 capsules, so horrendously expensive outlay again. I really hope his dose is right - don't want to be stuck with them if not! (I'll get to that in a minute) It seems Vetoryl is not sold here, but there are certain pharmacies who will supply Trilo to the vets, in large quantity only. This is not reassuring if his dose has to change.

    Yes the dose - seems we aren't starting low, but going straight to 60mg once a day. Fraser weighs just under 10kg. He is a Maltese Scottish Terrier cross. I questioned the vet about the dose and she said because it is so expensive they went straight for a dose that seems to be the most common maintenance to hopefully reduce likelyhood of changing. I'm still not sure, but so far it seems ok.

    So he has now been on Trilo for 2 weeks. On day 4, appetitie dropped dramatically and he started being his usual fussy self again, only picking out the good bits (they get home prepared food specific to them - not table scraps, they aren't kibble dogs. Actually they eat better than I do!). His water intake has slowed down, and this sudden burst of energy appeared! Without knowing, I started giving him his capsule with dinner (they don't eat breakfast) so a couple of hours after dinner he would start jumping on me with his toys wanting to play! Haven't seen this amount if energy in a while!

    A few days later I read here that the cap should be with breakfast because of the monitoring tests, spoke to the vet and changed to mornings instead. They now both eat breakfast too. So after two weeks now his skin has cleared up really well too, still flaky as before but no infection spots now. Energy levels are amazing, yet he is quite happy to stop and have a sleep too. Running after his ball well, panting less (forgot to mention that one earlier) and just looking brighter over all. And as far as I'm concerned, the best bit is he never stopped giving cuddles or trying to push me off the bed at night! Still very affectionate and loving.

    We are due for the STIM test next week to check his progress and I will make sure to get those results along with the others, but I just wanted to introduce ourselves and say Hi. Give you a bit of backstory to start us off, and next post I will probably bombard with questions. Such as "When is the other shoe going to drop?" I can't believe it has been this easy so far, from everything I have read, it shouldn't be. Don't get me wrong, I have been plenty stressed and tearful about the whole thing, but he just seems to be getting better! No side effects to date, happy little chappy.

    So on that note, we are off to the beach with my sisters and the rest of the K9 family (4 adults, 1 4yr old and 4 dogs). Thanks for reading this marathon post and I will check in again shortly.

    Naomi and Boys.

  2. #2
    Join Date
    Apr 2009
    Location
    Nebraska
    Posts
    5,606

    Default Re: Introducing Fraser

    What a cute dog! Thanks for sharing your story - can tell you've been reading on here and learning alot! You are off to a great start. Keep up the good work. Glad you found us and look forward to updates. Kim

  3. #3
    Join Date
    Jun 2012
    Location
    Canada
    Posts
    16,150

    Default Re: Introducing Fraser

    Total cutie pie. Hello and welcome Naomi to you and Fraser both.
    You know us well around here, that numbers things. I do like the way things are going for you so far, all well is a good thing. Hopefully he'll just settle onto that dosage and be happy. You either have or can get pred if needed? It does make one feel more comfortable to know you have it in hand, just in case.

    Where is here? Not sure since you said they can get Trilostane but not Vetroyl and only in 100 mg via compounding pharmacy? We have members from all over, so never want to assume where in the world someone is located. I'm in Canada btw.

    Really glad you took the time to drop a line and say hello. Don't worry about long posts, I do it too and some of the members can give you a long post run for your money! LOL

    Can't wait to hear more. Crossing fingers for good test results and a good week ahead.

    Sharlene and Molly Muffin
    Sharlene and the late great diva - Molly muffin (always missed and never forgotten)

  4. #4
    Join Date
    Nov 2012
    Location
    West Australia
    Posts
    464

    Default Re: Introducing Fraser

    Hey again, thanks for the welcome and sorry, should have said in my user details where I am, I'm in the most isolated city in the world - officially! Yup, Perth West Australia. (I'll change the profile in a sec) And Molly Muffin, just to clear it up, we can get different strengths of trilostane, just not different quantities. 100 Capsules per bottle at the cheapest available price of $460 per bottle. After dropping just over $6k at the vet in 8 weeks, this wasn't pleasant news I can tell you! It's weird actually, the eastern states get Vetoryl, but apparently there is some different regulation in WA that means we can't Typical, just because we are isolated we get slugged with the weird stuff

    Anyway after spending an hour at the beach with him and coming home for a bath, he has now finally decided to have a sleep (he ran and swam non stop. I swear, you wouldn't believe he is 13 if not for the copious amounts of grey fur!)

    Before I head off again, just a quick couple of questions. I hear a lot of people talking about muscle weakness in the hind legs. Is this something that develops from cushing's or trilostane use, or something that happens because of the age of them naturally. I'm just curious as at the moment he is still pretty strong and I just want to know if it is something I can expect? I haven't really found anything on long term effects with use of Trilostane, so it is pretty much up in the air of what I have to expect from him in future. My other question then is, if a cortisol crash happens, how long does it take to present? the reason I ask is until now he has had company almost 24/7 but I will have to return to work again in a week or so and just need to be sure that he will still be safe if left for 8-9 hours at a stretch. Currently he gets his cap at 8am, I would normally leave for work within 10-15 minutes of that, but often don't get home till after 5pm. If he crashes and I come home to a non-responsive dog, I'm praying it wont be too late? While the vet didn't give me any pred, I do have a fair bit on hand anyway from Oscar's bouts of the itchy scratchy's, so we are safe that way. I told them this too, so the vets know.

    He doesn't take anything else except a bit of Sacha's Blend with dinner for arthritis - it's amazing stuff, I haven't seen him limp at all for ages! While I realise some of this could be due to the cortisol in his system, he hasn't started limping again since starting treatment either. In saying that, we are heading into the warm stretch now, it's 35 degrees Celsius here today (perfect beach weather) and will probably stay around that or higher for the next 2-3 months at least. So I guess I have pretty much until June before the cool sets in and the arthritis might possibly show up again. Generally, apart from a mild heart murmur and Cushing's, he seems a pretty healthy old boy. I just pray it stays that way!

  5. #5
    Join Date
    Jul 2012
    Location
    Omaha, Nebraska
    Posts
    1,194

    Default Re: Introducing Fraser

    Hi Naomi, and welcome to you and Fraser! He is so cute! If you haven't seen it already, there is a thread in the Helpful Resources area of the forum with all the needed information about trilostane/Vetoryl. I think the recommendation is to have a stim test at the 2 week mark of being on the medication, so it is a good thing you have a test scheduled soon.

    My baby was on Lysodren, but I believe the warning signs of low cortisol are the same for both meds. You need to watch for loss of appetite, vomiting, diarrhea, lethargy. It sounds like you have emergency prednisone on hand, so that is good. If Fraser would develop any of the warning signs, you would stop the trilostane and contact your vet to have an ACTH test done to check the cortisol level. The prednisone can be given if needed.

    I am not sure how quickly the signs of low cortisol can present with trilostane, so I don't want to give you any incorrect information. Some of the experts should be along to provide more info for you. I just basically want to welcome you to the forum. Since it sounds like you have done a bit of reading here, I am sure you have seen that this is a wonderful bunch of knowledgeable and caring people here!

    Hugs,

    Tina and Jasper

  6. #6
    Join Date
    Apr 2008
    Location
    Tennessee
    Posts
    6,593

    Default Re: Introducing Fraser

    Hi Naomi and welcome to you and Fraser (and Oscar)

    I'm happy that you will be getting copies of all tests done by your vet to diagnose Fraser and will be looking forward to seeing the results. I will tell you that 60mg is a pretty hefty dose for Fraser and I am concerned that it has been two weeks since initiating treatment and your vet has not yet done an acth stimulation test to check cortisol levels. Cortisol drops like a rock in the first few days and it will continue to drift downwards, even in the first 30 days and beyond. A dog can get sick rather quickly if it drops too low so the first order of business is to get Frazer in for an acth stim test asap. Your vet needs to check electrolytes as well.

    I am including the url to treatment and monitoring charts and I would suggest that you share this with your vet so he understands and follows proper protocol. You will need to give Fraser his dose with a small meal and have him to your vet's office within 3 or 4 hours so that the test can be completed within 6 hours after dosing.

    I'm usually long winded but have an early vet appointment this morning so you are going to be spared the usual novel I post. I am sure that others will be by to welcome you as well as share their opinions and experience with trilostane.

    Glynda

  7. #7
    Join Date
    Apr 2010
    Posts
    7,965

    Default Re: Introducing Fraser

    I just have a moment but wanted to welcome you and Fraser. It sounds like you have done some homework

    Please heed Glynda's advice for an ACTH test asap.

    Just remember, when in doubt, dont give the pill

    I am so glad you found us.
    love,
    addy, zoe and koko


    My little dog - a heartbeat at my feet. ~Edith Wharton

    Memory is the power to gather roses in the winter

  8. #8
    Join Date
    Apr 2009
    Location
    Georgia
    Posts
    15,292

    Default Re: Introducing Fraser

    Hello and welcome to you and Fraser!

    I'm pleased to tell you that we do have other Australian members, and even one from Perth . So hopefully they'll soon be stopping by to greet you, too.

    In the meantime, as you already know, it will help us a great deal once you are able to retrieve the actual numerical results for Fraser's testing. But the symptoms you describe are indeed consistent with Cushing's, and I'm very glad that he seems to be responding well to the trilostane so far.

    Given the expense of the drug, though, I must admit that I am really puzzled as to why your vet would not have placed this initial prescription in the form of a smaller dose. You can always give multiple capsules if need be in order to increase a dose, but there are explicit warnings against opening/splitting a larger capsule in the event the dose needs to be decreased. It is not at all uncommon for the initial dose to require tweaking upwards or downwards, and often not in large increments. So here you are, stuck with 100 capsules of 60 mg. strength -- much too large to be able to make any incremental dosing changes. If it does turn out that Frasier's dose needs to be altered, I'm hoping that you may have a local compounding pharmacy (at least that's what we call them here in the U.S.) that would be willing to professionally repackage your capsules into a smaller form. Of course, there will be a charge, but at least the drug won't go to waste. And in the future, given the fact that you have to buy in increments of 100, I'd always opt for a smaller dosage strength so that dosing can be manipulated more easily. Fraser may end up needing a dosing change at any point in his treatment.

    I'm doubly concerned about this because, given Fraser's weight, 60 mg. is at the very highest end of Dechra's published initial dosing range -- it is not even in the middle (2.2-6.7 mg/kg). So the chances are very good that he may need a dosage decrease. In answer to your question about crashing, cortisol levels frequently continue to drift downward during the first 30 days of treatment. Having said that, episodes of low cortisol can happen at any time during treatment. So if there are any "work" mornings for you when Fraser appears to be at all unwell at breakfastime, I'd personally hold off on giving any trilo that morning and wait to resume the med until you can assess how he's doing upon your return home.

    Here's a link to the U.S. Product Insert for brandname Vetoryl. It contains a lot of helpful info about treatment and monitoring:

    http://www.dechra-us.com/files/dechr...ts/Vetoryl.pdf

    Once again, welcome, and continued good luck with Fraser's treatment! By harping on the dosage strength, I don't mean to be negative about things. It's great that you are seeing these improvements. But I just wanted to offer some tips that may help with future dosing.

    Marianne
    Last edited by labblab; 11-17-2012 at 08:55 AM. Reason: To add something.

  9. #9
    Join Date
    Nov 2012
    Location
    West Australia
    Posts
    464

    Default Re: Introducing Fraser

    Back again.

    Thanks everyone for the welcomes! I'm going to take Fraser in for a ACTH stim on Thursday when I have the day off again. This will be slightly longer than the usual 14 days, but not by much.

    Marianne, I agree that it was a high start dose, I even questioned the Vet on it, but I guess if worst comes to worse, my Dad is a pharmacist (albeit retired very inconveniently) but he has the contacts that I may be able to get the caps I have adjusted for a fee. I don't know but the potential is there at least. Apparently there isn't a huge difference in price with the lower strengths I was told, but at least my vets are in contact with our only Vet teaching hospital/University in Perth - Murdoch. That's where they got the dosing advice from so at least they have made the calls. I'm also lucky in that I have been going to the same vet practice for a looooong time, and they all know me really well. I have even spoken to all of them (all 4-weirdly all girls too) in the course of diagnosis and treatment, so if I do have an emergency I at least have access and it wont matter who is on roster that day. There is also a relatively new 24/7 emergency practice fairly local to me that has excellent reviews and my vet has ties to them as well. I think I'm covered as far as access to vets go.

    Thanks for the links too, I have read all of the Dechra info and looked at the helpful resources page on here too over the last week. I have spent a LOT of time trying to find out what we're in for.

    Just with regards to a potential crash, I'm wondering if it happens in a matter of hours, or if it develops over a day or so. I guess my fear is that Fraser is fine in the morning, I give him a pill and go to work, but get home that evening to find him sick. At the moment I am so paranoid I am taking time off work to watch him (and Oscar with his cruciate recovery), I wake up at night to check on him, waking him up too. As I said before, I am waiting for the other shoe to drop. It has all been positive so far, call me a pessimist but when's it going to go wrong? Has anyone ever had smooth sailing with this disease?

    Anyway, thanks for the tips. I'm signing off now, time for bed. Night!

  10. #10
    Join Date
    Mar 2009
    Location
    rural central ARK
    Posts
    14,549

    Default Re: Introducing Fraser

    Hi Naomi and welcome to you and Fraser!

    You are off to a great start educating yourself - THE most important factor in Cushing's.

    Has anyone ever had smooth sailing? Oh, yes....those are the ones we rarely hear from! My Squirt has had a fairly smooth journey - I first heard the word, Cushing's, the end of 2007...and she will be 15 this Feb, still here, still going strong for an old broad! So, hold on to the belief that "the other shoe" has been lost.

    There are some really good things about Trilostane. One, it doesn't stay in the body very long at all - only for 2-12 hours - so if there is a crisis, the drug is leaving the body quickly. Also, it is very easy to stop and restart this drug without losing ground like we Lysodren users can. So, if you see that Fraser has some signs that something may be up, like loose stools, lower appetite, nausea, you can withhold the next dose with no problem. Always listen to your gut when it comes to him - you know Fraser better than anyone.

    The first 30 days are the most nerve-wracking as that is the period when the cortisol is dropping, and it drops fairly rapidly with Trilo. So you want to keep watching him like a hawk...something you seem to have a solid grasp of.

    Keep reading, keep asking questions...and welcome to the family!
    Hugs,
    Leslie and the gang
    "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.

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