Trying to post on Stella... Questions Help needed ASAP

[stella]

New to forum. I have a 12 year old husky hounds mix who has been treated for Cushings since May with Vetoryl. She weighs 65 and we are now up to 180. Her last test results showed "5 at resting to 19".... (not clear what the numbers stand for except dosage not working.

Her problems are almost exclusively at night and the worst problem is excessive panting. So loud and upsetting impossible to sleep. She paces and pants for hours at night, has numerous episodes of incontinence (again at night, even after just going out). Looks to get behind furniture, under tables, in corners, on cool surfaces. All those symptoms, check.

She has developed a severe urinary tract infection.

Stella has always been an extremely anxious dog who always panted a lot. This panting at this extreme frightening rate has been going on for over a year now. At first, we thought it was anxiety related due to the death of her dog companion and treated her with several other meds.

On the Vetoryl ,she sleeps almost all day. Weak body. But still has times when she is happy. Often she just lies on her bed staring ...


We just began triple every 8 hour dosing. 60 60 60. The vet says if this doesn't work, we will have to switch her to Lisodren (sp), which would mean she would have to go off the Vetoryl for an entire week and then we would start the process with loading dose, those ACTH tests until we arrive at the right dosage. This dog is in such distress at night i cannot imagine putting her through a week of withdrawals. I dont know if she could make it.

Since May, Stella has had five ACTH tests done $2500 ... She had all the tests done to determine she had Cushings. Last week, she had an ultrasound which showed her adrenals are the size of tennis balls. Each time we up her dose, it seems to work for a week and then we have to go up again after testing

The vet says he is going to turn the case over to an endocrinologist Friday if we see no improvement


I am looking for info from anyone who may have had to do this switch.

And if since her symptoms are so bad at night, has anyone done dosing where a larger dose is given at night? Has anyone had a dog 65 lbs who did okay on over 180 total?

At what point do you decide enough?

[mytil]

Hi and welcome to you and Stella.

I am sorry you are having these these troubles.

I have just a minute, but I am very glad to read your vet is referring you to a specialist. Yes, there is a wash out period when you switch - at least 30 days and another ACTH test performed to get a baseline number.

With her pacing and panting all night from some time now, I am sure your vet has an opinion on whether this is a symptom of Cushing's or not - it could be something entirely different. Or, she could just be one of those cases where she would get better results from Lysodren.

You mentioned the last ACTH test was first draw (5) and second draw (19)? right? Well my understanding is that this should be 1.5 - 9 and not 19. Was the test performed between 4-6 hours after dosing?

Please keep us posted.
Terry

[Bo's Mom]

Hi There,
And, welcome to our group. You have stumbled on one of the best groups of people who will have so many answers to all your questions because they have seen and done it all. At this point, I don't have many answers for you at this point because I am dealing with a dog who was on Lysodren but unfortunately his dose was too high and now we are dealing with a dog who has gone the opposite of Cushings and he is only 9 lbs. But I do want to tell you that many others will come along and chime in with their experiences in a very short while. In the meantime, gather all the test that have been run on Stella and post them up so that the others can give you their advice on where to go from here. Good luck and please keep us posted.

[Jenny & Judi in MN]

I don't know anything about the more rare types of cushings so hopefully some of the long term folks will be on soon. Just wanted to give you and Stella a virtual hug. Judi

[frijole]

I am glad you found this site. I found it over 7 yrs ago and the fine folks saved my dog's life - my vet was over their head -

You have had 5 acth tests at $500 each?! Yikes. That is expensive. Are you in the US?

First off - Terry is right, you can't just switch from trilostane to lysodren. You need 30 to 45 days for the body to cleanse. I can see why you'd not want to do that.

I don't understand the results of 5 and 19 you posted. Can you please look at the lab results and be more specific... it is important if we are able to help you.

From what you have written I would probably not waste any more time with the current vet at $500 a test and no progress. I would move to the specialist NOW.

Two things that stood out to me that you wrote

- one is adrenal glands the size of golf balls.
- second is the fact that your dog is looking to get behind doors/go into corners. By chance is she shoving her head onto the floor/against things as if she has a headache?

Most cush dogs have pituitary cushings which is a tiny little tumor that sends signals to the body to produce excess cortisol. These dogs typically have adrenals that are slightly swollen. I don't ever remember anyone saying golf sized before.

Dogs with adrenal type cushings have a tumor on the adrenal gland and you will see that adrenal gland slightly bigger than the other one.

A smaller percentage of dogs have pituitary tumors that GROW and they become classified as macro tumors. That is where we see head pressing.

For all of these reasons - I would take Stella to the specialist. I think you've given the regular vet plenty of time but that you need someone with more experience.

I highly suggest you get copies of all tests that have been done so you can keep track of what was done over time. It will also help the specialist get up to speed faster and save you from paying for repeat tests. If you post the tests here we would also better be able to help.

Hang in there - you are no longer alone on the journey. Kim

http://www.k9cushings.com/forum/showthread.php?t=180
http://www.k9cushings.com/forum/showthread.php?t=182

[Squirt's Mom]

Hi and welcome to you and Stella! :)

That is a massive dose of Trilo to see no improvements so I have to wonder about the validity of the diagnosis on top of whether Stella is simply one of those pups who does not respond well to Trilo. Could you round up copies of the testing done to diagnose her and post the actual results here? Include all the little letters after the values like ug/dl or mnol/L, etc as well as the normal ranges for each abnormal value. Include all the info from an LDDS, HDDS, ACTH, and/or ultrasound. This will let us give you more meaningful feedback.

What caused you to take her in when the Cushing's was first suspected? What were you seeing in her or why did the vet suggest it as a possibility? Some of us first heard the word when we had blood work done for a minor procedure like a dental. Some of us just saw that our babies were changing and acting differently. It always helps to start at the beginning and fill us in on all the details - and we LOVE details! :D

I want to make sure you heard Kim about the washout period when switiching - your vet is incorrect to say you need to wait a week. The washout is a minimum of 30 days. You and Stella will be miserable, IF she does have Cushing's, while you wait but that little misery is preferable to the risk of rushing the switch. ;)

If I were you, I would insist on a referral to an IMS, Internal Medicine Specialist, asap and I would probably stop the Trilo in preparation for the switch as it doesn't seem to working well for her but that is something you and your vet(s) can work out. ;)

I'm glad you found us and look forward to learning more very soon!
Hugs,
Leslie and the gang

[labblab]

Hello and welcome from me to you and Stella!

Gosh, I am sorry to hear how miserable your girl is feeling. From what you've told us, I agree that the single most important piece of advice that we can possibly give you is to ask for a referral to a specialist. Stella's lack of appropriate response to the trilostane needs to be investigated by an expert. It sounds as though your own vet may already have a specialist in mind. But just to give you some additional resources, here's a link to a website that will allow you to search for an internal medicine specialist ("IMS") in your area:

http://www.k9cushings.com/forum/showthread.php?t=182

For the moment, I am going to assume that perhaps the two numbers you gave us earlier (5 and 19) correspond to a pre-ACTH (resting cortisol reading), and a post-ACTH reading. If that's the case, a post-ACTH result of 19 is definitely far above the therapeutic range that ought be achieved with trilostane treatment. Was that reading taken when she was still on 120 mg. daily rather than on the new dose of 180 mg.? Either way, I'd still get her in to see an expert ASAP.

Just to share some info with you, my own Cushpup was also treated with a very high dose of trilostane. He was diagnosed nearly ten years ago, and the dosing protocols were very different from what they are now. He was about the same weight as Stella, and we actually had him on 240 mg. (120 mg. twice daily) for a while. Even on that big a dose, his cortisol level never dropped dangerously low. But I now know that a dose that high may have interfered with another adrenal hormone level. So that's why I strongly encourage you to consult with a specialist before continuing on such a high dose or considering making a switch to Lysodren.

I'm really glad you've found us, and will be anxious to read more about what you find out.

Marianne

[Steph n' Ella]

Welcome to you and Stella! Hope you can get all your test results soon and post them. You have spent so much $ on those tests...the results are yours! Also, there should be a written report from the ultra sound. They are the notes taken as the tech views each organ. It is always better to have things written down in your files than trying to remember what your vet told you (usually over the phone) weeks ago.

[stella]

Thanks for all your responses. I take Stella in tomorrow for her acupuncture treatment with her Cushing's vets partner. They both work as a team which is wonderful.

Yes, my vet has been consulting with the specialist since we first encountered her not responding to the Veteroyl. She was the one who said we could go to 180, and that we should try 3 doses daily. She is aware of all the test results. and has informed his treatment regime for about a month now. She knows about the results of the ultrasound, which also by the way showed some growths in Stella's spleen, which neither felt significant.

I will pick up test results tomorrow to share with everyone. And yes, the numbers were taken during the stim test with 5 being resting Cortisol and then the 19 after stimulation. This was before we moved to the 180. She was tested again Monday after the 180 dose 2x a day was not working. He consulted with the endocronoligist who said lets try 3x a day at that dose and if that doesn't work I will take over with the other drug.

The weaning off period terrifies me .. I just cannot see her surviving this without intense stress and unbearable discomfort. The amount of panting is phenomenal. I feel no one believes me.

She does not have to hold her head at any angle (as asked above). She just cannot get comfortable.

I will be back with test results tomorrow. Last night I dosed her earlier, as soon as break through breathing began and the 10:30 dose succeeded - she slept until 5 but the dose at around 6 wasn't as successful in calming her down. Although she did manage to settle after a few hours and is sleeping now. But now is the time when she can always sleep without panting because I THINK her cortisol rages out of control in the PM and I think the dosing should be done then. At higher doses.

[labblab]

I'm so glad to hear that Stella's treatment has been supervised by a specialist. That makes me feel much more comfortable about the path forward. As far as the weaning period, the specialist may already have done this, but I feel certain the technical representatives at Dechra (manufacturer of brandname Vetoryl) would be happy to consult about the timeframe that might be best for Stella. As other folks have pointed out, it is true that we have seen published timeframes that list a month or longer. But when I personally spoke with a Dechra rep about this issue, I was told that their recommended washout period depends a great deal upon the specific circumstances of each dog's case. In other words, it is not so much a set number of days, but instead the timeframe can vary depending upon the treatment history/status of each dog. So if you do decide to switch Stella to Lysodren, it might be very helpful for the specialist to give Dechra a call.

I want you to know that I can truly sympathize about the panting. My boy seemed to pant continually until we got his cortisol lowered, and he visibly appeared to be miserable. For many dogs, apparently that degree of discomfort isn't evident. But it surely was easy to see with my baby boy. I could not WAIT to get that first trilostane capsule into his mouth when we finally got the OK to treat! So I am so sorry, and I believe I do understand your worry about leaving Stella untreated for any lengthy time. :(

Marianne

[stella]

thanks so much for this. You know, everyone including the vets only see Stella during the day when she can seem happy and really normal. It helps so much to have someone understand.

And Yes, they have spoken to the manufacturers of the Vetoryl as well. I am looking forward Friday to getting the name of the endo doc so I can start discussions with her.

Thanks again. I am so glad I found this forum.

[frijole]

Panting is a symptom of cushings and it is worse at night. Question - does it seem like at times it is so severe that it could cause cardiac arrest?

I'm asking this because my Annie was misdiagnosed - they thought she had cushings... we went thru almost a year of tests before we figured out she had a very rare adrenal tumor. It wasn't cushings but she had some of the symptoms. This tumor (pheochromocytoma) emits adrenaline and almost every time it was active was at night and she was restless and the breathing scared the crap out of me. She also was hot/feverish during the episodes. It made it really hard to dx because she never had the episodes while at the vets. In short - when active she had high blood pressure.

If this sounds at all similar you might mention it to the specialist when you meet. If it doesn't describe your situation well that is fantastic! Just sharing in case.. hugs, Kim

[molly muffin]

Hello and welcome!! So glad you found us too. You know once you walk in the door, sit down and put your feet up and start posting, that makes you family, right :)
This is a place with a wealth of experience.
Have you thought about recording her at night so you can show the vet what you are talking about.
The excessive panting is worrying. That is a whole lot of stress on one little body.

Hopefully the specialist can figure this out and solve the problem.

Hugs,
Sharlene

[stella]

report in before tomorrow's vet visit. this is night 2 of the 3x a day dose of 60. Last night I gave her the doses a little before the 8 hour period in the evening and early am and her panting is so much better. We both actually slept last night until 5:30...

There is no doubt that this is Cushing's from all the testing they did. I plan to ask tomorrow why both of her adrenals are so huge and why there is no tumor. etc.

I'll know more. But we had a night with no accidents (put some homeopathic drops in her water for incontinence) and panting much less both last night and tonight.

Thanks everyone. I'll check in tomorrow.

[labblab]

Oh, I'm so glad you girls have had some relief!! Fingers crossed that this dosing regimen will turn the tide. I know that 180 mg. seems like a lot medication, but it translates into a formula of 3 mg. per pound daily, and that is still within the original dosing range that was initially recommended by the manufacturer.

I'll really be anxious to hear how your vet visit goes. GOOD LUCK!!!!

Marianne

[Bo's Mom]

Good luck today!!

[stella]

Hello, everyone.

Stella and I met with specialist on Tuesday ... she had ALL of Stella's tests. She has been working with Cushinoid dogs for 20 years. Based on Stella not respoding to the Vetoryl, she said the tests show she was burning through the Vetoryl after six hours and therefore we started the Lysodren on Wednesday. 2X a day with food. Vet called in to check on her every day. The instructions were if there was a change in her eating, drinking, vomiting or diarrhea to STOP immediately and call. So today after her 3rd dose, she woke up with diarrhea and panting heavily. I took her in. They said lets stop and scheduled her for another ACTH test Monday morning. Did a blood test and the electrolites normal.

Stella had been refusing water. We came home. She continues to pant like crazy. I cook her rice and chicken. Vociferous appetite returns.

I guess I am just wondering if anyone here has had experience of really short loading period. If the dog has exhibited extreme lethargy, weakness, (which Stella did on the 2 1/2 days on drug) and was taken off then put back on?

I'm curious to see if this is going to just be a matter of reattempting the loading again. The unfortunate part was that the specialist is away for the weekend. The emergency hospital called her original vet who said he would continue with the Lysodren. But we decided not to and to wait until Monday.

Her's is caused by Pituitary. The sonogram showed her adrenal glands extremely enlarged.

Moderator's Note: I have merged your update on Stella into Stella's original thread. We, normally, prefer to keep all posts on a pup in a single thread as it makes it easier for members to refer back to the pup's history, if needed.

[frijole]

Hi! Glad you found us and most important YOU MADE THE RIGHT DECISION! :D Whatever vet that told you to give lysodren after diarrhea and not drinking water should lose their license. For real.

First off - important I reread your thread and as we mentioned you cannot switch from trilostane to lysodren without a washout period of 30 to 45 days. I understand you don't know us, we aren't vets etc. but we are speaking from experience and quoting from the manufacturers' recommendations - the two drugs interact with each other and not in a good way and I highly suspect that is causing your dog serious problems. If I read your info right you gave trilostane on 8/31 and started lysodren on 9/5 and that is only 4 days.

2 1/2 days is well below the average loading period but it varies from dog to dog. Also if the dose is too high a dog will load fast. Your dog weighs 65 lbs. Please tell us what dosage you are on and how frequent.

Do you have prednisone on hand? It is a MUST if you are loading a dog on lysodren. You give it in case of emergency and it can save a dog's life. I don't mean to scare you but since your specialist is unreachable over the weekend and the number you called gave you AWFUL advice I want to make sure you have it on hand. You give it if your dog continues to have diarrhea, not drink, gets lethargic - usually the dog can't walk/lift head up and is really out of it. It is from cortisol being too low and the prednisone mimics cortisol and gives relief in a couple of hours. If you do not have it on hand call that emergency clinic and DEMAND a prescription and pick it up tomorrow (or tonight if it's an emergency - don't wait)

Here is a link to information on loading that might be helpful as well. Also a link to info on what cushings is that is good for beginners.

Ask us any questions you want. We have been down the path and are here to help however we can. We aren't vets - just people who have been there.

Please don't give your dog any more lysodren. Please confirm you have prednisone on hand and if you don't please get some asap. Kim

http://www.k9cushings.com/forum/showthread.php?t=180
http://www.k9cushings.com/forum/showthread.php?t=181

[Squirt's Mom]

Hi,

How is Stella this morning? I am quite concerned for the same reasons Kim is - there was NO washout period between the two drugs and you were given deadly, literally deadly, advice about continuing the Lyso in the face of obvious distress. There is no way in @#!! I would take my baby back to that vet. :mad:

I hope you have or were able to get some pred last nite and give a dose to Stella. Please, please, please - do NOT give any more Lyso right now. Let us hear from you when you can...and I hope it is to hear that Stella is much better this morning.

Hugs,
Leslie and the gang

[stella]

Stella is a lot better today. The specialist I saw with her has worked with Cushing dogs for 20 years. The doc who said to keep her on the lysodren? We did not follow his advice.

The vet's (specialists) assistant called this morning to check on her.

Here are a few things I didn't report:

When I met with the specialist on Tuesday, I asked her about prednisone, should I have it on hand. She told me that based upon the results of the ACTH stims, Stella's levels of cortisol are SO high there was just no way we had to worry about her going into a low cortisol situation. Again, I do not have the numbers. She said that the of her adrenal glands were enormous.

Right now, the diarhhea is gone. Her appetite is back. Her panting is much under control. I took her for a swim in the creek just now. She is wagging her tail. Picked up her tennis ball.

So what the specialist said in terms of waiving the waiting period. Based upon having had ACTH stims done like once every week for 3 weeks on the Vetoryl, she could tell that Stella was burning through the drug completely after 6 hours. Nothing left in her system. Therefore, she felt very confident that we could do away with the waiting period.

Right now next on the agenda is I drop her off on Monday AM for another ACT stim. At that point, I will ask her about her decision to waive the period and if that contributed to her reaction.

Thanks so much everyone. We made it through another tough night. Stella is incontinent and the vet said we are not going to deal with this until we have her cortisol under control.

I am pretty exhausted and feel kinda in shock and depleted. I've been grieving the idea of losing her so many times in the past month or so. I feel kinda like a zombie right now.

It's just Stella and I living alone and most of my friends have little patience ... they tend to think i am either over reacting or else that i jsut cannot accept the fact that I h ave to put her down and I am prolonging her life for me. Which is not the case.

I will check in on Monday with results. Pray that we make it safely through the next two days. All indications right now is that she is doing fine.

[Bo's Mom]

I just want you to know that WE are all here for you. I too have experienced the friends and even family who think that I am making Bo suffer through all the testing and medicines that he is having to do. This last visit to the specialist was done without me telling any of those people what I was doing. But, I too know that this isn't the case yet. I pray that one day Bo will tell me when it is time. Or, I will have the medical experts to tell me. Until then, I don't worry about the others who think I am doing the wrong thing.
Hoping that Stella keeps feeling well and her days of chasing tennis balls in the creek are still many in numbers. Keep us updated.

[stella]

Im so confused. Stella is scheduled for another ACTH stim tomorrow. Today she has begun exhbiting all the signs of Cushings - excessive panting the Number 1. Im like almost 100 percent sure now that she did not have a long enough induction period and i am just wasting time and more $ with this test, when what we should do is restart her on the Lysodren, maybe a t a lower dose.

So exhaused. She'll be awake at 5 , finally got her to sleep with some Trazadone ...

then have to keep her occupied without feeding her until 8:30...

I just don't know what to do anymore.

[Steph n' Ella]

Since you are testing with the IMS today, I think it will be worth it. It is too bad your vet didn't refer you sooner. :( You may have to start over with loading or have a "wash out" beriod before switching to trilo.

Just remember we are all here for you and will help you get through it! I don't know how you went so long all on your own! It would be great if you could get coppies of all those test results you paid for a post them up here. That way those with all the experience with their own cush dogs can help you out!

[stella]

Began second loading with Stella this morning. Her ACTH came back showing her cortisol level had fallen but not nearly enough. We have cut med back to 1 tab 2x daily with meal. So I am feeding her a bland diet and giving her lysodren wrapped in liverwurst. We are also giving her probiotics, keeping her diet as bland as possible. I am really carefully measuring her water this time.

So far okay today. She slept most of the day. Vet said I could also give her Holy Basil so I gave her some of that. Going to give her some Melatonin as well to help her sleep.

Wish us luck. I was really glad that the vet pharmacist called yesterday and said to call him with any questions and concerns as well.

[frijole]

Could you please post us the exact numbers on the test? It is helpful. Also sometimes labs and others make mistakes - best to always get a copy for your files. Post here and we can help identify if there are errors as to reading the results. Thanks. Kim