We will be with you! Give Blue a belly rub from me and tell him things might be getting much better soon!
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We will be with you! Give Blue a belly rub from me and tell him things might be getting much better soon!
We got the blood test results vet said it's through the roof...baseline of 3 and test results at 28 post. Is this bad? It sounds bad. She is starting him on trilostane i have to order it. I have to get the directions yet but I think she said 120mg. I'll know more later today. And antibiotic for his skin issues. I pray this will work and he will get better. I don't know what to expect or how this will go. Thanks for any insight or advice.
I’m so glad you went ahead with the testing. A post-ACTH of 28 is indeed consistent with Cushing’s, but it is far from the highest result we’ve seen here. I think my own boy had a post of 35 before we started treatment. So try not to worry unduly about that level, and now we’re all gonna focus on getting him better! I’m guessing and hoping that you’ll see some fairly rapid improvement in some of his symptoms.
Here’s a big tip about ordering his medication, though. I see that Blue is a big boy, weighing about 100 pounds. So a starting dose of 120 mg. is only a little bit higher than the recommended formula of 1 mg. per pound and may turn out to be fine. However, our experience on the forum is that larger dogs often end up needing only a comparatively smaller dose of trilostane compared to their weight. So if you’re going to be ordering brandname Vetoryl, I’d encourage you to ask your vet to write the prescription for 60 mg. capsules rather than 120 mg. capsules. This will be more expensive to begin with, but you may save money in the long run. You can always change the capsule size once you know for certain what dose Blue ends up stabilizing on. But while you can always give him two of the smaller capsules (or make different combinations with even smaller capsules), you cannot split the 120 mg. capsule. So if 120 mg. is too much for him, all those capsules will go to waste. You might even want to start with only 60 mg. for the first few days in order to help his body adjust to lowering his cortisol more gradually. Dogs tend to have fewer side effects from the trilostane if they start on a lower dose and work upwards, rather than vice versa.
I strongly encourage you to make this dosing suggestion to your vet. Over the years, we’ve really seen this sort of plan work out better, both clinically and financially. And definitely continue to keep us updated, OK? I’m really hoping you’ll see Blue starting to normalize again before long!
Marianne
Did you start him on medication yet? How is it going if you did?
hello! We ordered the meds and it came on Saturday. so I need to be aware of that I guess when it comes time to refill...allow for shipping? We gave him his first dose, 120mg of trilostane yesterday. we are planning on giving it to him in the evening with his dinner, and watch him closely. they said once a day. they also scheduled the next blood tests for april 4th. we are scared to death, but realize he really needs this so we are hoping for the best. his skin condition is getting worse, but doesn't look infected. he is on antibiotics, but hes flaking with scaly bumps on his back, hair falling out in small clumps. i'll keep you posted on our progress. thanks so much for thinking of us.
When dosing once daily, the manufacturers of Vetoryl and also specialized clinicians tell you to dose in the morning with breakfast rather than in the evening. There are a couple of important reasons. First, if your vet is planning to monitor via ACTH stimulation blood testing, the blood should be drawn no later than 4-6 hours after dosing. For most folks, this rules out getting the medication only once in the evening.
Secondly, trilostane remains optimally effective in the body only for about twelve hours. So if you’re dosing once in the evening, the medication is most effective when the dog is asleep, and is already wearing off by the time the dog awakens and is active the next day. As a result, you may be disappointed by a lack of symptom improvement during the waking hours. So unless it is difficult to dose Blue along with breakfast, that’s the better way to go.
Also, I’m now able to supply you and your vet with a link to a research study that highlights the warning I wrote about earlier — that larger dogs often need/tolerate smaller doses of trilostane, per pound, than the general, 1mg. per pound formula. So I continue to caution you to watch Blue very closely for signs of overdose since he is starting out with 120 mg. We’re you able to order 60 mg. capsules, or do you only have 120 mg. capsules on hand?
Here’s the link: http://www.k9cushings.com/forum/atta...2&d=1522092380
Marianne
oh good to know. you are so right! gosh I didn't think that through. how do I switch him over? skip tonight and give it in the morning? thanks so much! and also, yes they only approved the 120 mg tabs for 30 days supply. should I just order a lower dose now? I will definitely talk to the vet about my next order for sure. but for now I only have the 120mg tabs.
Yes, that’s what I’d do — skip tonight and start fresh tomorrow. Also, I think we were typing at the same time, so be sure and look at the info I added to my last reply about larger dogs needing smaller doses.
Since you’ll be seeing the vet on April 4th for monitoring, you can probably hold off on a decision about placing a different order until then. However, this is assuming you don’t see any adverse effects before then. If so, I’d stop the medication and immediately let your vet know. If the 120 mg. turns out to be too high, you can take a break if necessary and await a lower dose to arrive. But if it were me, no matter what, I’d request that the next order be placed in smaller capsules so you’ll have more flexibility to make changes down the line.Quote:
Originally Posted by Larinda
Also, here’s one more helpful link for you. It’s an excellent sheet of trilostane dosing guidelines put together by a couple of our staffers:
http://www.k9cushings.com/forum/atta...3&d=1522092871
4 days in with 120mg vetoryl in the morning with his breakfast, and so far so good. I may see slight improvement, but certainly not any worse than he was prior to the meds. No adverse reactions thus far. Here's hoping to a great weekend with positive improvement daily! His blood test is Thursday April 5th. Praying this works!
Blues acth came back 3.5 pre and 3.5 post. (At the bottom of the results the lab stated an extra lavender tube was submitted and would be held for 48 hours). So I'm hoping they did the tests right. Ever see it perfect like that? The same? Last month prior to vetroyl it was 3.0 pre and 28 post. Doctor said keep him on 120mg daily and unless anything changes with him they would test again in 6 months. He weighed in at 95lbs. Last month he was 106lbs. T4 is 1.7 . I asked the doctor about the dosage and how the guidelines from drug maker may have changed to lesser mg per lb recommendations but the doctor stated he was on correct dosage. I also told him I was new to cushings and I am trying to educate myself and I thought I had read where testing should be 30 days rather than 6 months? He felt if blue is doing well then keep doing what we are doing. If he loses weight or gets sick like vomiting diarrhea let them know. I admit I should be jumping for joy I suppose but I also feel this nervous speculation. I guess I'll take one day at a time and hope for the best. Blue is doing better with his symptoms somewhat. Certainly no worse. His skin is looking better and they gave him 3 more weeks of antibiotic and still prescribing thyroid pill as well.
Blue is on 120mg and went from 28 post cortisol to 3.5 pre and post? in 30 days on 120. And blue weighs 95lbs, so my concern here is that the dosage is too much, that is alot very quickly. 3.5 pre and post means that no additional cortisol was released from the adrenal gland after the ACTH injection.
So, here is what I would do if in your shoes. Based on a the way testing is now being done in Europe and which is actually considered to be a more accurate method of determining how a dog is reacting on the medication. They are testing cortisol levels, with a simple blood draw prior to the trilostane being given to see what the level is. It cost less and is accurate.
This was posted to another member
So I'd print that out, take it to the vet and say just to ease my mind, can we please just check the cortisol before she gets her med one day in a week or two. :)Quote:
Just within the last couple of weeks, those of us in the U.S. have learned that many vets in the U.K. and Europe have shifted away from using ACTH stimulation tests to monitor trilostane treatment unless there is a worry that a dog’s cortisol may have dropped too low. Instead, they are simply measuring resting cortisol right before the next dose of trilostane is due to be given. New research supports the notion that this actually gives better guidance re: the need for dosing increases, and it’s certainly a heck of a lot cheaper. Take a look at this link and the monitoring flowchart that’s included. Your vet may be very interested in this info, as well, and might be willing to investigate it further on your behalf.
http://www.k9cushings.com/forum/show...=1252#post1252
In reading back, I see that Blue started taking the Trilo on 3-25, so he dropped clear from 28 to 3.5 in only two weeks. That is a big, big drop in a short time, and it sounds as though your vet is unaware that cortisol typically continues to drop even further clear through the 30 day mark when treatment is initiated. I agree with Sharlene 100%. I would insist that testing of one sort or the other take place at that time — either a full ACTH or a pre-pill cortisol level. If Blue’s cortisol does remain stable and the dose is unchanged, then I would insist on retesting at the three month mark. Your vet is not following the testing protocol recommended by the drug manufacturer, researchers, and clinicians alike. I do not know why. But as Blue’s advocate, I think you need to insist on the proper monitoring yourself.
Marianne
I had a random question...its 3 weeks today Blue is on Trilostane 120mg daily. He seems to be doing ok. he does look like he's lost some more weight but its hard to weigh him at home. he went from 106lbs march 15th to 95lbs - on april 6. i should probably try to get him weighed again somehow. He had a couple good days this weekend. his eyes looked good. (last weekend his eyes looked dilated or something- it seemed kind of weird). But...I do notice sometimes he breathes kind of different when he's sitting in his chair, and it seems like his heart is beating right out of his chest sometimes. my friend noticed it also this past weekend when he was sitting beside him. why is that? should I be worried or is it just some random thing. I thought I'd see if you've ever encountered anything like that. In the meantime, I did email my vet(she was out on vacation when blue had his last ACTH test april 6) to ask her to review the last ACTH test, as it seemed so "perfect" and I also asked about a 30 day testing rather than 6 months as her associate vet told us. perhaps she will enlighten me more when she returns from vacation. thanks for any insight.
Like Marianne and Sharlene mentioned, there was a huge drop in Blue's cortisol in only 2 weeks so an Addison's crisis could be a possibility. When the cortisol drops too low and/or an imbalance in the electrolytes has occurred many symptoms will present themselves, one of them being a change in breathing and heart-rate so having his cortisol tested is what I recommend.
We spoke with blue's vet today and we are doing another month of 120mg trilostane. (he started this medication a month ago) She then wants to go to 60mg and schedule acth test 10-14 days after the change in dosage. We'll see how he does. So far so good. His skin is looking much better too, and his antibiotics are almost finished. (6 weeks worth). Thanks to all of you who are helping me to better educate myself on this crazy cushings. I know what to be looking for. One day at a time I suppose.
If he is doing well on 120 mg., why would she want to cut the dose in half a month down the road? Has she scheduled another monitoring ACTH test now that a full month has passed? If not, I’m doubly baffled by her dosing plan. If she doesn’t know how the 120 mg. has effected his cortisol level at this point, how does she know it’s safe to continue for a full month as is? And if it is indeed a safe and therapeutic dose, why would she then want to arbitrarily cut the dose in half. I am totally baffled. Can you share her rationale with us?
Marianne
she said....and here goes....
" In regards to the ACTH stim testing: equivocal results pre and post within the reference range are excellent. It means the adrenal glands cannot be stimulated excessively and are producing adequate levels of cortison.
If symptoms are well controlled that easily I usually back off testing for a while as well. Nevertheless I do agree that with the weight loss and the additional research coming out of UC Davis, it is a good idea to try a lower dose of Trilostane.
Let’s go with 60 mg after your next box is finished and monitor his response. If his symptoms return, we will increase his dosage to 90 mg. If he is stable, happy and healthy with no excessive drinking and urinating, normal appetite and energy levels, I still want a repeat ACTH stim test after about 10 days to be able to compare apples to apples.
There are different opinions out about doing resting cortisol levels only, as there can be unexpected fluctuation present on a daily and circadian basis, which in return may lead to us switching his Trilostane dose erratically. The most important factor for us is his quality of life and control of symptoms.
he is currently doing well, tolerating his medicine well and improving. My goal is to see if the lower dose will suffice to help him just as much. I don’t anticipate him having negative effects from staying on 120 mg for 4 more weeks and then switching. So go ahead and finish that box of 120 mg and follow up with 60 mg, thus setting his next ACTH stim test in 6 weeks."
so...I guess that's good news then?
Hi again, Larinda. Thanks for supplying us with your vet’s email. Unfortunately, I still have remaining concerns about your vet’s dosing/monitoring recommendations. Here are my worries.
Your vet hasn’t offered any explanation as to why she thinks it’s OK to back off from testing other than the fact that Blue’s symptoms are well controlled. The problem is that we can expect that Blue’s cortisol level continued to drop even lower after that first two-week testing mark. Outwardly, he may still be looking OK, but inwardly, he may be verging on a cortisol level that may end up being unhealthy for him. Virtually all specialized clinicians recommend that cortisol testing be done at the 30-day mark after beginning treatment. Here’s what Dechra, the manufacturer of Vetoryl has to say: “Given that there is so much emphasis placed on using the control of the clinical signs to monitor Vetoryl, why bother with Cortisol testing? This sounds like a good idea but there is no way of detecting too little cortisol in an otherwise well dog until it becomes unwell – and hypocortisolism can be dangerous.”Quote:
Originally Posted by Larinda
Again, if Blue’s symptoms are well-controlled and his cortisol level does remain within the desired therapeutic range on the 120 mg., I don’t understand why your vet would arbitrarily cut the dose in half. Broken record here, I would want to know where his cortisol level has stabilized after a month on the 120 mg. before continuing for another full month on that dose, or before making any dosing change.Quote:
Nevertheless I do agree that with the weight loss and the additional research coming out of UC Davis, it is a good idea to try a lower dose of Trilostane.
Let’s go with 60 mg after your next box is finished and monitor his response. If his symptoms return, we will increase his dosage to 90 mg. If he is stable, happy and healthy with no excessive drinking and urinating, normal appetite and energy levels, I still want a repeat ACTH stim test after about 10 days to be able to compare apples to apples.
In regards to testing resting cortisol levels alone, your vet is correct that some research done several years ago on testing baseline cortisol several hours after giving trilostane yielded equivocal results. However, she may not be aware of very recent research that has revolutionized trilostane monitoring in the UK and Europe. It utilizes baseline cortisol testing right before the daily dose of trilostane is given (“Pre-Pill” testing). This is now the monitoring testing protocol that is formally recommended by Dechra in the U.K. and Europe. I would give your vet this link so that she can read about the newest monitoring advances. After doing so, I’m hoping she will rethink her decision to delay retesting Blue, whether via ACTH testing or pre-pill resting cortisol level.Quote:
There are different opinions out about doing resting cortisol levels only, as there can be unexpected fluctuation present on a daily and circadian basis, which in return may lead to us switching his Trilostane dose erratically. The most important factor for us is his quality of life and control of symptoms.
he is currently doing well, tolerating his medicine well and improving. My goal is to see if the lower dose will suffice to help him just as much. I don’t anticipate him having negative effects from staying on 120 mg for 4 more weeks and then switching. So go ahead and finish that box of 120 mg and follow up with 60 mg, thus setting his next ACTH stim test in 6 weeks."
https://www.dechra.co.uk/therapy-are...tisolSuperPage
As owners who know our dogs best, we are always responsible for watching them closely and reporting any observable changes to our vets. Unfortunately, though, your vet is placing an extra burden on you personally. By neglecting to test Blue’s cortisol before continuing with the 120 mg., the first warning that you would have of low cortisol is him actually becoming sick, and overdosing can be life-threatening. So you will need to make note of any changes at all that you see, and report them immediately. I have to trust that your vet will know how to respond appropriately by testing cortisol level and if called for, stopping the Vetoryl and giving supplemental steroids as needed.
Marianne
ok good to know thank you so much. I'm a nervous wreck but I watch him closely. i'll keep you posted. thanks for all your advice.
I just want to reinforce something Marianne posted -
By "dangerous" that means up to and including death. High cortisol (hypercortisolism or Cushing's) is rarely life threatening. Low cortisol (hypocortisolism or Addison's) IS life threatening. If you see any of the following you cannot wait - you must stop the med and call the vet asap. If it is after hours, contact the closest ER.Quote:
...hypocortisolism can be dangerous
loss of appetite
nausea / vomiting
loose stool / diarrhea
lethargy
If you see any of the above you must act quickly. So do keep a very close eye on him especially over the next few weeks since he is out in wild waters with his vet's approach to treatment.
Hugs,
Leslie
If you see the first sign, stop the meds and go get an ACTH okay? We are going to worry ourselves silly until we know everything is fine long term. :) I know, mother hens, its just what we do . hahaha
quick check in...Blue had his test and the results are looking good.
cortisol pre acth 2 and cortisol post 3.7
that's good right?
thank goodness we are in a good place right now...with him....hope it continues!!! his weight has stayed at 90 lbs.
hes one expensive pup though! We are doing 60mg trilostane twice a day, as well as his thyroid pill twice a day.
Yes, those results are great as long as Blue is looking and behaving well :-). How long has he been taking the 60 mg. twice a day?
Marianne
A couple of weeks
OK, thanks for the info. If Blue has only been taking this dose for two weeks, do be aware that his cortisol level may continue to drift downward during the first month on any given dose. So you’ll want to remain very watchful for any signs that his cortisol is dropping too low. But we join you in hoping this works out your be the perfect dose for him.
Marianne
hello! hope you are well! I had a quick question. Blue has a dry cough...hack....not constant. started last night. and this morning, and still this afternoon. I initially thought he ate his food too fast. warm dry nose. laying around. but he does that all the time. we are on a wait and see basis, thinking it will get better or worse, right? then we can call the vet if it continues? has anyone had this happen or is it an unrelated issue? thanks for the advice.
Welcome back! Yes, if this continues, I’d contact your vet. I doubt that the cough is Cushing’s-related, but could instead be a symptom of a virus or illness such as canine flu or kennel cough. If so, no special treatment may be required. But I always like to be safe rather than sorry, especially with a weekend coming up.
How’s Blue been doing in terms of his Cushing’s symptoms?
Marianne
If Canine Influenza is present in your area I would get Blue in for testing asap.
He has been doing well. Even his hair grew back on his belly. His next test is next week. It's been 6 months. We did leave him for a few days as my son got married in tampa Nov 17. Had a babysitter come stay with him at our house so he wouldn't get so stressed out. He's been a little off since but maybe it's the adjustment of that? We even wonder if he's getting forgetful ? forgets we just fed him ha. Usually a cookie helps. And I can always tell in his eyes when something isn't right. they get glossy and blank stare. Now the cough. So maybe I'm worrying too much. At least I know his test is soon to ease my mind. I'll keep an eye on his cough. Thanks!
just wanted to check in....we got blue's test results...doing good! total T4- 2.2 - the cortisol-pre ACTH was 1.3 and the Cortisol-Post ACTH 2.1 . his ALP was 642 six months ago and now it is 281. we were happy about that! the Anion GAP number was 29 which was high. should I be worried about that? anyhow...we are winning I suppose. his cough stopped also so maybe he had a bug. thanks for listening.
Thanks so much for updating us! In general, it sounds as though things are looking good. However, depending upon how far out of range the Anion Gap is, that could indeed be a problem. That’s a lab result with which I am largely unfamiliar, but after Googling it just now, I see that there can be a variety of causes for elevation including diabetes, pancreatitis, kidney problems, Addison’s disease, GI problems, etc. Some of these issues can be serious, so what has your vet told you about Blue’s result? Is the result very far out of range?
Marianne
hello! blue's urinalysis came back and I think we are doing good.
the vet stated: Blue's urinalysis results are as expected showing a very dilute urine (caused by Cushing's disease), without protein or blood in the urine. One commonly finds bacteria in free catch urine and without evidence of an active sediment (white and red blood cells), this is considered not clinically significant.
When urine is dilute a regular urinalysis may not pick up bacteria so an urine culture and sensitivity test is recommended.
Lori
Blues eyes are dilated we went to vet his pupils aren't working she thinks sards we are referring to opthomologist. She did test for diabetes and high blood pressure all good there. Ugh.
I am so sorry to hear this, please let us know what you find out...keeping you all in my thoughts and prayers.
Lori
So eye doctor said his eyes are healthy so vet thinks it's neurological in his brain. A stim test showed normal cushing s controlled no overdose on vetryol. We are treating conservatively symptomatic so he's started on low dose steroid last night to maybe reduce swelling his brain. This morning he's peeing in my house. Ugh
Ugh...I'm so sorry.
Blue has passed. We believe it was brain tumor that caused him to shut down. He became totally lethargic didn't engage seemed confused didn't seem to know us had strange distant cloudy look in his eyes didn't want to eat incontinent in house. vet agreed it was time. We are devastated. Thank you all for so much support and guidance. we couldn't have got through all this without you. You were such a great help to us in taking care of blue.
Dear Larinda, I’m so deeply sorry to read your news this morning. Having lost my own Cushpup to what we assume was an expanding macrotumor, my heart goes out to you doubly. We witnessed the same symptom progression, and it was tragic to witness our boy leaving us, step-by-step, right before our eyes. Blue is now released from any more confusion or suffering, but I know the hole in your own heart is enormous. We hope it’ll give you a bit of comfort to know that Blue is now listed on our memorial thread of honor:
https://www.k9cushings.com/forum/sho...Left-Us-(2019)
If you will tell us the day he passed, we can add that to his line. We can also add a photo link at any time. You can send any photo of your choice to us at k9cushings@gmail.com.
In the meantime, please accept my deep sympathy on your loss. And please know that we’ll welcome you back at any time to tell us how you’re doing, or to share memories of your sweet boy.
Sending many hugs to you from across the miles,
Marianne