Jesse just diagnosed with Cushings

[frijole]

Re: Jesse just diagnosed with Cushings

Patti,

Just letting you know you are doing a great job of this and yes - trilo users "tweak" - Lysodren users "not so much tweaking".

I truly thought when I read the first paragraph of your post I was reading a post from Glynda.

Kim

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi Kim and Glynda,

Glynda, I was just looking over what you sent me about the cortisol and when it rises. Like clockwork, Jesse's head pops up at 2:30 every morning.
That's when I let him out and he goes to sleep on the front porch where its cool.
But - he's awake at that hour. I could set my clock to him.

Patti and Jesse

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi Again,

I'm wondering..... what are some signs to look for when there is need for "tweaking"??

I know someone said to make sure I tell my vet, I would love to but to be honest with you, (there are two partners involved here- of course- just to keep everything confusing like it has been from day one - neither has used trilostane) and I'm actually the one that told them how I wanted to dose.
( Because of the cc forum stories I printed out and put aside). One of them wanted to start with 120 once a day. (The other was on vacation) It just DID NOT make sense to start high when I read about so many big dogs on low doses. And Jesse already wasn't feeling well, why make him more sick. NO WAY.

Anyway, can someone shed a little light on when things may need - or call for "tweaking"

[Roxee'sDad]

Re: Jesse just diagnosed with Cushings

Hi Patty,
It's just my opinion and of course you know your Jesse better than anyone else. I would suggest:
-You think about how Jesse was previous to starting the Trilo.
-Any improvements or declines since he started the Trilo
-If all is at least as good as previously starting the meds with no bad symptoms, I would wait to see how Jesse's 1st acth stim results come out. If they are a little high, the vet will probably tweak the meds a little higher.
-I would give him a chance to accept this new drug into his system and level out. Once both you and Jesse are comfortable with his dosing (meaning no ill side effects) then there are test I learned from Marianne and Glynda, I think it called a UC/CR urine test. Do it with the first pee in the morning and the vet can check the cortisol? levels and see how much the trilo is still affecting the cortisol. (this is all simply put) They can explain it much better than I.

From there you can decide with your vet on the twice a day vs once a day dosing and the possible benifits. Other than that, you have to give it a chance, watch your Jesse, the panting, and other symptoms reappearing and what time of the day he seems to get better or worse. Maybe start keeping a simple diary of the times he sleeps, is it restfull, times she eats and drinks, times she want to go outside etc... Remember that every pup is different. In the meantime watch for current signs of improvement and record them, it doesn't happen overnight as it takes some time to see the affects.

This is just my opinion and I am hoping for the best for both you and your boy Jesse. I can see you have learned so much already so keep up the good work. Patience isn't one of my attributes so I can see where we can get anxious to see results.

Once again, keep up the good work.
John (Roxee's Dad)

[Lulusmom]

Re: Jesse just diagnosed with Cushings

Hi Patti,

John has given you some really good information. We have probably done you and injustice and confused you by using the term "tweaking". A more appropriate term is simply an adjustment to dosing. Sometimes it takes a few adjustments before finding the correct dose. You are just starting treatment so forget about tweaking for now and follow established protocol.

I believe the plan was to do three days of 15mg BID and then 30mg BID for seven days. If Jesse is tolerating the dose well, I would actually give the 30mg BID for 11 days and have an acth stimulation test done on day 14. I can't remember if you had an acth stimulation test done and if not, your vet may want to do one before starting treatment so as to have a baseline to use in assessing how well the Trilostane has effectively dropped cortisol in a 14 day period. Your vet will have to make a judgement call as to adjusting the dose based on the post acth stimulation number and the status of symptoms. Just make sure that the 14 day acth stimulation test is done within 3 to 6 hours after dosing with a meal.

I'd like to blab some more but have to get to work...I'm really late already. I'll be back later to check in on you.

Glynda

[Roxee'sDad]

Re: Jesse just diagnosed with Cushings

Hi Patti,
Just dropping in to see how it's going with your Jesse boy. Hope all is going well and your starting to seeing some improvements.
John (Roxee's Dad)

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi,

Well, I don't have too much time - here goes.
He started Fri. May 1st 15 am 15 pm We were at 2 1/2 gallons of water
Sat 15 am 15 pm
Sun 15 am 15 pm
Mon 30 am 30 pm
Mon 3/4 gallon of water!!!!!, he slept for the first time months from 7 pm till 2:30
When he got up at 2:30 he could barely pull himself up to get on his elbows and he was so weak I had to help him up to get out onto the porch.
Tues am. 15 mg. am still really really weak in the legs.
I decided not to give him Trilostane Tues night.
Tuesday night still incredibly weak in the legs. It scared me and him
Wednesday - a little better. am stronger legs today.
Water consumption is back up it seems.
I don't know what to do.
Should I go back to 15 am 15 pm??
I called the vets and left a message - not that they'll know what to do.
Its their first time with trilostane.
God help me - to help my dog.

Please - we're looking for feedback.
This is really really something else - isn't it????


Patti and Jesse

[Lulusmom]

Re: Jesse just diagnosed with Cushings

Hi Patti,

If I were you, I would stick with the 15mg twice a day until and see what the acth stim test in 10 to 14 days looks like and take it from there. It could be that even though you started slow, the 30mg twice daily may have been too much or it could have dropped cortisol too quickly causing withdrawal. This is more common than you know. There is also a possibility that Jesse could have arthritis that has been masked by the high levels of cortisol. Once treatment has effectively started to reduce these levels, a lot of dogs will start feeling the aches and pains of arthritis.

We're all here for you so hang in there, kiddo.

Glynda

[frijole]

Re: Jesse just diagnosed with Cushings

Patti,

Just chiming in to agree with Glynda and let you know that we really do see this frequently. While I know you will still worry - please know this is common and that's what the "tweaking" discussion was all about. You just "tweaked" to a lower dose because 30 was too high. Hang in there. Kim

[ventilate]

Re: Jesse just diagnosed with Cushings

Patti;
I hope that Jesse is doing OK. IMO if the weakness continues you need to hold on the trilo, as you have done before. Back leg weakness is a sign of having to low cortisol. With your vets lack of experience with Trilostane it is resulting in your dog not getting the excellent treatment he deserves. IMO I would be looking for a internal med specialist to take care of my dog. Trying to do this on your own is not a good idea, as when things go wrong or not quite right like now you need someone who knows what to do, who has done it before. We here have personal experience with the medications and can help guide you from what we have learned ourselves, but we can not take the place of an experienced vet. It would be in your dogs best interest to have someone with experience taking care of your pet. I would ask your vet for a referal as soon as possible so you can get this straightened out as soon a possible and so your dog can continue on the road to feeling better, and you do not need the added stress of trying to figure out what to do, that is what we pay the specialists for.
Good luck
Sharon

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

OH MY LORD!!!!!

I feel like the MAD Scientist!!!

I don't know what I would do without all of you

What do people do with vets that don't know any of this (Most of them)!!!
None of them that I've met!!!!!!!!!!!!

And Peterson and the (other) vet were going to start Jesse right off on 90 mg. once a day - and NO PREDNISONE!! Oh - I hate to think of it!!!

My mother called the vets last night at midnight (emergency vet) to get prednisone (we thought - maybe that's what is was - too much Trilostane for Jesse.)
I explained what was going on - the vets that are working with Jesse now work at the same place. The vet on duty said NO! He doesn't need prednisone with trilostane. Do you know I have asked (lets see) 6 , yes 6 vets and they all said they would not give me prednisone." You don't need it!!!" they insist.
He was drinking from his water bowl and he just fell over - can you imagine what we were thinking at that point.
We were both on the floor all night with him crying our eyes out - all night!!
We had never ever seen him like that. It was awful.

He is almost back to himself at this time today 4:30 - thank GOD.

Yes, 15 / 15. I wonder if I should wait another day. Start Friday - maybe??
Or 15 just tomorrow morning. I don't know.

I do know that his water consumption (I told you) went down to about 3/4 gallon from 2 1/2. Think about it.

And yes, I've learned about the arthritis from you guys and I have UP'D all of his arthritis stuff. Big time.

You don't have to take this personally - But I love you guys.

Thank you from the very bottom of my heart - Jesse's too, and my Mom too.

Patti and Jesse

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi Sharon, Oh how I wish I could find someone.

I've been to the endocrinologist (specialist), he's the reason Jesse hasn't been treated till now - we saw him in January. He told us to NOT treat Jesse because the drugs would surely kill him, yes he said kill him.
When I asked him what would happen if I didn't treat he said "nothing" - Jesse would be just fine.
Well, that was a lie that I'll never ever get over.

This is my 6th vet - and not one of them has used trilostane. I called every vet around, believe me. (One did but he admitted he really didn't know what he was doing - dosing every other day)

Yes, I can see how trilostane could be extremely dangerous

Can that urine test tell "anything" at all that would be helpful till the next blood work gets done???

Thanks Sharon

[Lulusmom]

Re: Jesse just diagnosed with Cushings

Hi Patti,

You aren't the first member whose vet has not used Trilostane. I can think of at least three members off the top of my head that helped educate their vet. Sooo, don't panic, girlfriend. It won't hurt to hold off on the Trilostane until Friday and then only do the 15mg twice daily. It's always better to take it nice and slow. By doing so, you may end paying for a few more acth stim tests but it's worth it to make sure that Jesse doesn't go through this crap again. I think somewhere back in your thread somebody (probably Marianne) told you that UC Davis uses a very conservative dosing protocol, something like 1mg/kg. I can't remember how much Jesse weighs but I would think 15mg twice daily is more in keeping with their protocol. I personally much prefer UC Davis protocol to Dechra's, the manufacturer.

A lot of vets do not prescribe prednisone when treating with Trilostane as it's half life is pretty short. Most dogs bounce back rather quickly by just withholding the dosing. I personally kept it on hand when I was treating my two with Trilostane but never had the need for it. If they ever got sickly, I just took them off of it for a few days. My vet and IM are more familiar with Trilostane and knew that I wanted Prednisone for sleep insurance. Just keep twisting your vet's arm. Tell him that Trilostane can throw a dog into an addisonian episode just as sure as Lysodren can and that while rare, there are documented cases of total adrenal necrosis.

Glynda

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi Glynda and friends,

I am so happy to report that Jesse is Much better today, his legs are stronger.
He slept really good last night - which helps anyone. (not that I would know)
I'm waiting for the vet to call me today, I'll tell him that going up to 30 - 30 was overdosing him.
I'm not expecting him to tell me much, (remember he knows nothing about trilostane) but I'm sure he'll agree with sticking with 15 - 15.
I'm wondering about just 15 once a day.

I know some of you are saying to find and listen to a good vet, and I agree. But already, if I had listened to 3 of them, Jesse might just be a memory.
But he is HERE - RIGHT NOW - and I"M LOVING HIM WITH ALL I'VE GOT

Jesse is back up to 2 gallons a day - which is a bummer.

Having walking legs is a priority. I am so hopeful he gets better, thank you all for your wonderful wonderful support.

A friend of ours is waiting for the cush test report today, a beautiful husky named Sebastian. I'm hoping for best - his parents are incredibly dedicated to him - as all good parents should be. He's a lucky lucky dog and they are lucky lucky parents.

Patti and her boy Jesse

[Lulusmom]

Re: Jesse just diagnosed with Cushings

Hi Patti,

I think Jesse will be okay on 15mg twice daily and at this point. Without having an acth stim test done the day a dog shows symptoms of overdose, it's almost impossible to tell if the adverse reactions are due to cortisol withdrawal or if the dose is too high. Jesse's acth stim will tell the tale.

I do hope you will encourage your friends to join our community. We'd love to hear about Sebastian and help in any way we can. My ears always perk up when I hear Husky and cushing's in the same sentence. They are a nordic breed like my Pomeranians, Lulu & Jojo, and are predisposed to adrenal hormone imbalances. They should never be treated with Trilostane without first having a full adrenal panel done by the University of Tennessee, so remember to pass that on in case we don't get the pleasure of meeting your friends.

Glynda