Molly. 9 year old, JRT with cushings on trilostane tremors

[dajophlptt]

Can you that have experience with trio share your exp with tremors . Molly has been on med for about two months 15mg twice a day. She has no symtoms now, looks great, no weakness weighs 16.5. She has been getting more tremors every week and when she is laying down on her side to rest is is like she has contractions from her neck on down that seem to be timed with inhaling. Is this what we can expect? Is there anything else we can do? She is under treatment at Purdue U.
Thanks
Dave

[labblab]

Dear Dave,

Welcome to you and Molly. I am glad to hear that Molly is otherwise doing well, but sorry to hear about the tremors. We have had other dogs who have experienced odd tremoring or shivering episodes, and rather than repeating what has already been written elsewhere, I'm going to give you a link to another member's thread in which a similar question was asked. And you'll end up seeing that there is yet another link contained in that thread which I think will be of interest to you as well:

http://www.k9cushings.com/forum/showthread.php?t=3658

Do take a look at the replies posted in these threads, and then let us know what additional questions arise afterwards.

Also, here are a couple quick questions for you, too. Can you tell us whether Molly's trilostane dose has been changed during her two months of treatment? Also, it will be great if you can tell us what the actual numbers have been on any monitoring ACTH tests performed during this time. Last but not least, please fill us in on her general Cushing's history -- symptoms, diagnostic tests, any other health issues, etc. All this info will help us give you our most accurate feedback and suggestions.

Thanks so much!
Marianne

[frijole]

Hi and welcome from me as well. Did Molly have the tremors before the cushings dx? I ask because you also used the word shivers. My dog Annie had shivers all over - never in front of a vet of course. :p Come to find out she had an adrenal tumor. Every time she had the shivers her skin turned pinkish (bright), she was feverish and she quit eating.

Obviously it could be the dosage of trilo but it could be something else so I'm sharing my story. Good luck. Kim

[dajophlptt]

Don't think I used that word, however I don't remember any problem before all this started last July. She has had extensive (expensive) testing at Purdue, two ultra sounds no tumors or anything that did not seem normal. Just to look at her she looks great, the symtoms she had were excessive thrist and urination which the trilostane stopped. She has had at least three ACTH test since with good results. I have not seen the test results. It is not easy to contact vets at Purdue like it is a local vet.

[Bgoods]

Don't think I used that word, however I don't remember any problem before all this started last July. She has had extensive (expensive) testing at Purdue, two ultra sounds no tumors or anything that did not seem normal. Just to look at her she looks great, the symtoms she had were excessive thrist and urination which the trilostane stopped. She has had at least three ACTH test since with good results. I have not seen the test results. It is not easy to contact vets at Purdue like it is a local vet.

On the ultrasounds, did they see both adrenals? If both were enlarged, then you most likely are looking at a pituitary tumor, either a micro- or macroadenoma. This could be confirmed by advanced imaging (MRI/CT). I mention this because if it is a macroadenoma, the tremors could be a direct result of the adenoma instead of a Cushing's or trilo-induced symptom. (THINKING THROUGH THIS -- SPECULATIVE) I think I would ask my vet about it as at least something to chew on.

I guess it all depends on how aggressive you want to be. In the case of our Rolo, we decided to go the most aggressive (MRI is the preferred diagnostic at least here at UT). I am thankful we did. The diagnosis of the macroadenoma and its size left us no good alternative other than radiation, which Rolo began on Monday (less than one week from MRI date).

PS -- Yeah, I probably do see big macroadenoma's lurking now behind every corner since Rolo's diagnosis last week. It was somewhat scary seeing just how huge that thing was in his head. I am thankful that we didn't see worse symptoms that were probably just around the corner untreated. In this, I am reminded of an old saying:

"Just because you are paranoid, it doesn't mean someone is NOT out to get you." I think this applies to tumors too.

[dajophlptt]

Molly is much worse now, still more weight loss, no energy, I can tell she feels bad. Purdue has ran all sorts of tests except MRI and do not seem to know what to do next. I am unable to put all of this in writing and express what you want to know on this forum but I sure need advice. I have read everything I can find on cushing on here and the internet.

Dave

[frijole]

Dave, Can you tell us if you are still giving the trilo? Also, when was the last acth test and what was the cortisol reading? Thanks, Kim

[dajophlptt]

Yes we are still giving trilo Most test they tell me tests are at 4-5. She gets so bad after a few days I take her off for a day or two. We now have her down to 21m in three doses. She gets bad after a few days and even starts to lose appetite. Appetite lose has never been a problem before. She is not bouncing back after removal like she did at first. She has bad tremors a lot and most always shakes.

[frijole]

Have you or the folk at Purdue called Dechra, the manufacturer of the drug? They have been very helpful in the past at answering questions when problems arose. While it has obviously helped end the urination issues and lower the cortisol to a good level, the tremors, weight loss and lack of energy are cause for concern.

I think a call might be beneficial. Perhaps there is something in trilostane that Molly just can't tolerate. Kim

[dajophlptt]

I don't know if they called. I only get to talk to lower level vets that are supervising students. They do however speak with higher up people and have told me about it several times. I will call tomorrow and push now to get some answers. Since she is only getting worse we need to find out more.

[frijole]

Great. If you are concerned about the bureaucracy getting the message right FYI you can make the call. We have had members call them with great success. I have not used trilostane but I am sure someone on the board will have a name and phone number. Sending positive vibes to you and Molly. Kim

[dajophlptt]

Still waiting for Purdue to call back 24hrs later.

One thing I did not mention before was they found on ultrasound that she has a mass on her spleen.


Here is what they called it and what they did. Nodule was noted on spleen. Sample was taken using ultrasound, and cytology. The results were extramedullary hematopoiesis and not unusual in older dogs.

[Squirt's Mom]

Hi Dave,

The mass on the spleen concerns me a great deal. Here's why - when Squirt was first diagnosed with Cushing's they told me she had PDH, the pituitary form. After the second ultrasound I was told about a tumor on her spleen. Our IMS and surgeon said there was no question that it had to come out. The danger was that the tumor could cause the spleen to burst, causing her to bleed to death internally. They had her in surgery as soon as the surgeon could get her in - a matter of a couple of days. I was given explicit directions on how to carry her, pick her up, what to let her do and not do in order to protect the spleen and try to prevent a rupture.

Once that tumor and half her spleen were removed, Squirt's cortisol returned to normal. The stress of that tumor was causing the elevations in her cortisol. She did not have PDH even tho she tested positive on five different Cushing's tests. If I had started treatment for Cushing's with that tumor present, there is no doubt in my mind that Squirt would not still be with me. So I urge you to get a second opinion on the spleen mass.

Hugs,
Leslie and the gang

[dajophlptt]

Yes I was aware of your situation on the spleen. I don't known why they are not concerned. Maybe it was small. I don't know what else to do they are supposed to be the experts. I showed them your post about your dog.
Dave

[Squirt's Mom]

:D:D Yup, I've reached that age where I repeat myself. :D:D I am also one of the biggest worrywarts on the planet. :p

I, and everyone here, simply want the best for you and Molly. ;)

[tiggylola62]

Hello Dave,

Our thoughts are with you.


love from Linda and Tiggy xx

[dajophlptt]

:D:D Yup, I've reached that age where I repeat myself. :D:D I am also one of the biggest worrywarts on the planet. :p

I, and everyone here, simply want the best for you and Molly. ;)

I sure did not mean anything, I appreciate all help. It looks like after some reseach that nodules are quite common like Purdue said. However large mases are life threatening.

[dajophlptt]

We are considering switching off Trilostane and using Mitotane. Has anyone done this? How long do we need to wait to start treatment?
Purdue called last night and we had a long discussion and she (vet) will be calling Dechra for advice.

Dave

[lulusmom]

Hi Dave,

I switched both my dogs from Trilostane to Lysodren. We waited until both dogs were symptomatic again and an acth stimulation test was well above normal. My littlest one didn't start showing symptoms again until her post stimulated cortisol was above 22 ug/dl. It was at least two months before I pulled the trigger and started Lysodren loading. My dogs were on Trilostane for two years and while it has a short half life, it seems that it's inhibiting effect on cortisol production lasts a lot longer than you would think.

Glynda

[dajophlptt]

Thanks, that is interesting Molly will start drinking in about 3 days after stopping trilo. Restarting it will take four or five days to stop drinking. She just feels so bad taking trilo and no quality of life. She has had almost no other symptons. She does however have trouble maintaining weight.

[lulusmom]

Dave, are you still giving Molly Vetoryl? What is her appetite like? I should mention that just because Molly's excessive drinking and peeing returns quickly, that doesn't mean you should start on Lysodren right away. My dogs were on Trilostane for two years so I'm sure there is a big difference between the state of their adrenals and Molly's. Do not feel panicked about getting Molly on Lysodren. If you can deal with the excess peeing and drinking, then wait at least a month. By that time, I'm hoping that Molly's appetite will have increased considerably. It is a very bad idea to administer Lysodren to any dog who is not eating normally.

[frijole]

If I recall someone called Dechra and they said a minimum of 30 days before starting lysodren. I think you are doing the right thing Dave. Gotta think of Molly's happiness which you are obviously doing. Keep us posted on what Purdue finds out. Kim

[labblab]

Even though Dechra's published literature cites research recommending a 30-day washout when switching from mitotane (Lysodren) to trilostane, I recently called Dechra's U.S. office to ask about switching the other direction -- from trilostane to Lysodren. The rep with whom I spoke said that the time frame "all depends" on a variety of factors, and that there isn't one standard wash-out period that fits all dogs. I would recommend that your vet contact one of Dechra's technical representatives directly in order to discuss the specifics of Molly's situation.

http://www.dechra-us.com/Default.aspx?ID=365

Marianne

[dajophlptt]

Dave, are you still giving Molly Vetoryl? What is her appetite like? administer Lysodren to any dog who is not eating normally.

I stopped yesterday after two days back on 14mg per day. She was off over the weekend. She already feels much better today and is eating.

Why did you take your dogs off? Are you satisified with new treatment and how long have they been on it?

[dajophlptt]

[. I would recommend that your vet contact one of Dechra's technical representatives directly in order to discuss the specifics of Molly's situation.

http://www.dechra-us.com/Default.aspx?ID=365

Marianne[/QUOTE]

The vet at Purdue will be talking to them I even gave her phone numbers. She was very interested in what they will have to say. I suggested she call after it was suggested here.

[dajophlptt]

Molly is feeling better today and drinking has not been to bad. She is playing with a ball right now and even waged her tail for the first time in a long time. I am giving her Ophiopogon powder from my local vet who does western and hol medicine.

[busyman370]

Hi Dave,
I wanted to bring up the number of dosing times per day. I was under the impression that giving one dose daily has a positive effect regarding the adrenals. Sorry I can't remember the details, but I wanted to get this out as quickly as possible. I know that there are folks on this forum that do know what I am talking about.

However, I do know that there are plenty of folks giving twice daily doses, but felt worth mentioning about the effect and the adrenials.

I say this only to try to help by turning over any rock that may uncover something that will help you.

I am wondering since she is getting such a constant stream of Trilostane that it may be having an adverse effect on her, again referring to the adrenals and the need to give them some off time from Trilostane.

I repeat, I looked but can not find that info regarding what I've said, but since I remembered reading something about it, thought I'd get it on the forum and hope that someone can jump in and conclude it.

Fred.

[dajophlptt]

When she started drinking again on the trilo we went to two doses and then three does and reduced the total amount to 21mg. It sure did not work out. Thats a interesting thought about one time per day. Maybe some else has something on this.

[busyman370]

When she started drinking again on the trilo we went to two doses and then three does and reduced the total amount to 21mg. It sure did not work out. Thats a interesting thought about one time per day. Maybe some else has something on this.

Maybe when she started "drinking again" she should have had another ACTH test, and or, her once daily dose of Trilostane increased.

However, I am only trying to bring something up that may help you correct your situation.

My "freshman" take on this is that her once a day dose should have been increased, then see how she was doing from there.

I will try to find that info relating to the multiple daily doses, as it relates to the adrenals, and post it. I just don't know if I saved it, or was just something I read.

I do hope that some of the more knowledgeable folks here on the forum will comment on this soon with some usable information that will help to address the doses per day as it applies to your present situation.

Fred.

[busyman370]

Oh, I forgot something. Maybe you should consider taking her to a "regular" Vet and let them step in to the picture. Seems like your trying to work with Purdue is costing you to waste precious time trying to get answers. They've done all the diagnostic tests, now you need someone to focus on the treatment. As far as tests like ACTH and blood work, a regular Vet - WHO IS COMPETENT - can handle those easily.

Scout around your area and look for the better local Vet hospitals, then contact them, discuss the details, and see if you feel they are qualified to handle your case.

It may help if you started working with someone that you could have a more direct relationship with, and get your answers much more quickly.

Fred.

[dajophlptt]

I have been to four vets including my local vet that we have used for several years. My local vet is not available a lot, he goes all over the country working on horses his main thing. The last time I waited four days for him to look at test results and call me. He was in town working during this time. They including his staff do not seem to be very concerned about us.
Trilostane makes Molly sick, she feels bad, she shakes and has large muscle tremors, I sure would not want to give her more and make her feel worse. Her ACTH test always showed in normal range around five every time she was tested which was a lot of times.
The vet at Purdue is very concerned about Molly she even called me at 9:30 pm and talked a long time after she started work at 7 am.

[dajophlptt]

My main concern right now while we wait between treatments is that it appears she is still losing weight. I feed her Sojo complete, a little Wellness dry to help clean teeth. She also loves canned tripe which I given her very little in the last six months. I weighted her on my scale and it appears she has dropped below 15, she was holding at 151/2. Need to take to locate vet to get exact weight. When she was healthy she weighted around 18 for years. Her sister Ollie has also lost weight on Sojo, she was a little overweight before.

[dajophlptt]

Nobody has anything to say?

[lulusmom]

The vet at Purdue is very concerned about Molly she even called me at 9:30 pm and talked a long time after she started work at 7 am.

What was the vet at Purdue's major concern with Molly's case?
Did you discuss Molly's weight loss with the vet at that time and if so, what did s/he have to say about it? Was Molly at a healthy weight before starting treatment with Vetoryl? Do you think the weight loss is due to Molly's loss of appetite after starting treatment with Vetoryl or is she eating well and still losing weight? Has her appetite returned to normal since taking her off Vetoryl? Did the last vet to physically assess Molly mention that she was underweight? Is there any way you can post a picture of Molly as she looks now?

[frijole]

I have been waiting to hear what the vets at Purdue found out when they phoned Dechra. I assume that hasn't happened yet? As I mentioned earlier - you can phone them directly. They will talk to pet owners. Its an option if this drags on much longer I wouldn't be afraid to do it.

I also assume you are still withholding the trilo. Have you seen any return of the cushings symptoms yet?

You have two options re the cushings: lower the trilo dose and intentionally keep her levels higher than a 5 to see if that helps OR take her off, wait six weeks. If her symptoms return at that point you could consider lysodren.

The weight loss has me stumped. This is not normal with cushings nor trilostane usage. So it concerns me that perhaps something else is causing tremors and weight loss. I would also assume that Purdue has done follow up blood panels to check that out.

Other than weight loss and tremors - does Molly appear to be normal? Is she eating normal quantities but still losing weight?

Thanks, Kim

[dajophlptt]

What was the vet at Purdue's major concern with Molly's case?
Did you discuss Molly's weight loss with the vet at that time and if so, what did s/he have to say about it? Was Molly at a healthy weight before starting treatment with Vetoryl? Do you think the weight loss is due to Molly's loss of appetite after starting treatment with Vetoryl or is she eating well and still losing weight? Has her appetite returned to normal since taking her off Vetoryl? Did the last vet to physically assess Molly mention that she was underweight? Is there any way you can post a picture of Molly as she looks now?

All the vets have been concerned about weight loss, but don't know what to do about it. Molly was at 19 when all this started last August. Her loss of appetite has only been a couple times. Taking her off of trilo returned it. She is eating good now. I feed her up to five times a day way more than she should need. Purdue has ran multiple tests and two ultra sounds. They are stumped about weight loss. They have done Lepto (2) xrays, blood work, urinalysis, bile acids elevated 50, They did mention at the last visit to Purdue 3-14 more weight loss. Local vet weighted her 3-28 at 15.8. Looking at paper work Purdue never puts weight on it. She has been off Trilo since the 24th. Excessive drinking, 24 oz yesterday feels much better. Has drank as much as 32oz in a day. I have loads of paper work from Purdue, I can scan an email them if it would help, way to much to put on here.
Thanks Dave

[dajophlptt]

I took some pictures but she looks just fine in them and you won't be able to see anything. She never has shown the appearance symptons that others have. She did lose a small patch of hair on her shoulder (3/8") that grew back. Her hair got thicker and wavey on her rear half. Her coat has a thick ruff appearance that she never had before. She gained a pound at onset. Very slow to regrow hair after her three ultrasounds. Never had any weakness and still could jump like a JRT. Not doing much jumping now. Does not want to sit on lap, goes off by herself. Allmost never wags tail. Messes in her kennel and carpet if not let out often enough.

Dave

[lulusmom]

Hi Dave,

We have had other members report that their dogs experienced weight loss on Vetoryl but I don't think anybody determined the cause but the one common thread was Vetoryl. The problem is that while Dechra lists weight loss as a side effect, they don't indicate whether it is due to hypoadrenocorticism (cortisol way too low), which is to be expected, or if it can be a persistent side effect in dogs who are eating normally and whose cortisol is within the published therapeutic range. This would be an excellent question for your vet to ask the technical reps on staff at Dechra. If Molly lost weight while eating normally, she may be one of the few dogs who simply can't tolerate Vetoryl.

Glynda

[dajophlptt]

I will be weighing her tomorrow at local vet and calling Purdue and maybe Dechra. I sent e-mail with details about last few days already. I just looked at some old pictures of her. She was robust with muscles popping out everywhere. She looks nothing like this now. Molly is on the right and Ollie on the left in avator.

Dave

[dajophlptt]

Hi we weighted Molly Monday and she was down another 1/2 to 15 pounds. She still has a lot of tremors that are more like contractions of her whole body. Now drinking out of control up to almost a 1/2 gal a day. Panting some and getting more hungary each day. Eating stuff she had refused to eat while on Trilo. Not feeling near as bad as she did on Trilo.
We are going to do MRI and try to find out what is going on before we try milotane (spelling?).
The Purdue vet spoke with Dechra and decided Trilo was not for Molly.
Any thoughs appreciated.

Dave

[lulusmom]

Hi Dave,

I'm glad the Purdue vet talked to Dechra and decided that Vetoryl is not for Molly. I've been out of town and trying to keep up to date but with no time to post. I had every intention of expressing my opinion which is the same as your vet's....stop treating with Vetoryl so I was happy to see your latests update. I'll be looking forward to hearing about your MRI appointment.

Glynda

[frijole]

Good to hear from you Dave. Glad you are going to try lysodren/mitotane. The reason for the water intake is that cortisol is high again due to being off of the trilostane (waiting to start lysodren) so that doesn't surprise me. I assume they told you to not restrict her water as she needs it as crazy as it seems.

The shivering... have they checked her BP? Probably did but my Annie had all trembling due to high blood pressure. It was caused from a tumor. She would shake all over and sweat and her skin was bright pink. This caused her to lose weight. Although you ruled out an adrenal tumor I was wondering if it could be bp and that maybe that caused the weight loss.

When did you take her off trilo? Trying to figure out how long til you can start lysodren... Kim

[dajophlptt]

She has been off since the 24th 10 days. She did have blood pressure that was high. We did a recheck at local vet after visit and it was ok. They though it might have been stress during Visit at Purdue. Purdue visits do not go quickly since students are involved. She normally does not have problem with vet visits and is very calm and is the best behaved dog in the waiting room.

Where was the tumor at that caused the high BP?

Dave

[frijole]

Dave, It is a very very rare type of adrenal tumor. The episodes would come and go (regardless of if it was cold or hot outside so I knew it wasn't weather) and she just shook. I took video and its on Utube if you want me to find it I can.

Anyway this tumor is called a pheochromocytoma. Most often it isn't diagnosed until the dog has passed away - I discovered it because I was relentless and went to Kansas State Univ vet school finally. The tumor sits inactive and the dog appears normal. When it is active the tumor emits adrenaline which results in HBP. It took a long time to confirm the HBP because most of her episodes were at night and by the time I got her to the vet she was normal.

I had already treated a dog for cushings and thought this dog also had it. We tried lysodren and it didn't work. That is when we knew something else was going on. She went from 18 lbs to under 11 lbs in 2 years. If you go to my profile you can view her photos, her name was Annie. She lived with this for 2 years and was truly a fighter. She passed on Feb 25th this year.

I hope this isn't what Molly has but if it is and you catch it early enough surgery would still be an option as she is young! I'd mention it to the vets at Purdue and perhaps they could take another look at the adrenal ultrasound that was done to make sure they were able to get both adrenal glands on the film.

Kim

[dajophlptt]

I will bring this up our vet seems to be opened minded and really wants to figure this out.
She shakes almost all of the time and the large tremors she has are very often. She will lay on her side and pull her legs up with her whole body contracting. They will stop after a while and she will sleep. While she sleeps I notice that sometime her breathing is much faster than normal. During these tremors she is alert and able to jump up quickly in case there is a squirrel that needs to be chased off.
Her first ultrasound noted that her adrenal glands were a little small. The last ultrasound after the trilo they noted they were both enlarged and noted that was to be expected of a dog on Trilo.
Her symptons are like Cushings except she looks good (thin) no pot belly, coat nice and thick, one small spot of hair loss that grew back.
Right now it is a full time job bringing water and letting her out or cleaning carpet. She is way over 2 quarts today.

[dajophlptt]

Just got back from Purdue with nothing but bad news. Molly has tumor near pituitary gland. I saw the MRI and it looked like it was as big as my thumb judging by the overall size of her head, They called it a pituitary macroadenoma. She did not do well with anesthesia and they stopped MRI because of heart rate and blood pressure. They had already got what they needed. She has not had any heart problems before.
We have an appointment for Monday with radiation department.

Dave

[frijole]

Hi Dave. Me again. Sorry for the update but at least you know what you are dealing with and it explains the symptoms. Macro tumors are found in a small % of cushings cases as you by now know. I am linking you to some info in our resource area that might be helpful. Also I'm linking you to a thread a member created about treating macros. I'm not sure if these members read often but we can help put you in touch if you'd like.

Hang in there Dave. Enjoy every minute and please continue to ask us questions. We'll research and help all we can. Kim


http://www.k9cushings.com/forum/showthread.php?t=229

http://www.k9cushings.com/forum/showthread.php?t=3567