Nikki 11 y/o min pin/chi question about seizures [Archive] - Canine Cushing's Information and Support Forums

Debbie

01-20-2014, 03:33 PM

Hello! I am new and have read several threads on this board but now have a question I can't find an answer to.
A little info: My dog Nikki was diagnosed last May with cushings and has been on Trilostane and melatonin and lignans since then.
She had a seizure Saturday night and I am trying to find out if it could be related to either the disease or the medication. Her Dr has said to discontinue all meds for 5 days then restart all meds and re-test her ACTH after 2 weeks.
He said it doesn't usually cause seizures but I figured I would ask people with alot of experience (you guys!).
She was diagnosed with an ACTH test and the sex hormone panel done by Univ of Tennessee. She also had an ultrasound of her adrenal glands and a dex suppression test. She has had a consult with an internal medicine specialist but is currently being treated by our regular vet.
I guess one of my concerns would be maybe my regular vet could be missing something? He is very competent but there is always that question in my mind.
Her most recent ACTH test done last week came back very low with the pre sample being .7 (should be between 1-5) and post sample being 3.7 (should be between 8-17.)
she had been taking 4 mg trilostane once per day and now he wants me to have her take 3 mg once per day when I start her back up. She weighs about 8 1/2 lbs.
So, anyone know if the seizure could be related to any of this?
thanks! Debbie

Squirt's Mom

01-20-2014, 03:43 PM

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Harley PoMMom

01-20-2014, 05:21 PM

Hi Debbie,

Welcome to you and your girl! Your membership has now been manually approved, so from this point onward all of your replies should be visible as soon as you post them.

If you could get your hands on all copies of the tests that were done on Nikki and post only those abnormalities that are listed that would be great. We are especially interested in the results of any diagnostic and/or monitoring tests that were done too...Thatnks!

When a dog has Cushing's their cortisol is elevated and treatment is started to control clinical symptoms along with decreasing cortisol production. With Trilostane, the therapeutic ranges are 1.45 ug/dl - 5.4 ug/dl and can go as high as 9 ug/dl if symptoms are controlled.

A higher percentage of dogs with Cushing's are pituitary based, which means that the pituitary gland has a small tumor growing. The tumor is usually slow growing but sometimes this tumor can grow larger and can have adverse neurological effects such as a seizure. Seizure is listed, among others, as a adverse side effect of Trilostane:
In two UK field studies with 75 dogs, the most common adverse reactions seen were vomiting, lethargy, diarrhea/loose stools, and anorexia. Other adverse reactions included: nocturia, corneal ulcer, cough, persistent estrus, vaginal discharge and vulvar swelling in a spayed female, hypoadrenocorticism, electrolyte imbalance (elevated potassium with or without decreased sodium), collapse and seizure, shaking, muscle tremors, constipation, scratching, weight gain, and weight loss. You can find this information and a lot more here: Dechra's U.S. Product Insert (http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf)

I am sorry for the reasons that brought you here but so glad you found us and started posting. ;) Remember we are here to help in any way we can so do not hesitate to ask all the questions you want.

Hugs, Lori

labblab

01-20-2014, 05:30 PM

Hello and welcome to you and Nikki, although I'm sorry for the problems that have brought you here. I do have a couple of thoughts to quickly throw out here, but not a lot of time to post. So I apologize in advance if I kinda jump all around. :o

First off, seizures are not a typical side effect of trilostane, meaning the medication itself. And if Nikki has been taking it since May and this is her first seizure, I wouldn't think it would be the drug that directly caused it. However, there are conditions that can arise secondary to Cushing's and Cushing's treatment that might be linked. But the seizure may be totally unrelated to Cushing's, as well.

First off, can you describe the seizure in more detail? Also, did your vet also test Nikki's blood chemistries and cell counts in addition to the ACTH performed last week, or now, subsequent to the seizure? Abnormal bloodwork could provide some clues as to cause. For instance, low thyroid levels are definitely linked to seizure activity, and it is not uncommon for Cushpups to also be hypothyroid. Additionally, if Nikki's sodium and potassium levels were/are unbalanced, this could correlate with trilostane overdosing. Any lab abnormalities would be of interest.

As far as the ACTH results, the norms you are looking at are actually the norms for dogs who do not have Cushing's. The therapeutic range for dogs treated with trilostane is different, and lower. According to the makers of brandname Vetoryl, a desirable post-ACTH result is 1.45 - 9.1 as long as all symptoms are adequately controlled. If not, the target is even lower: 1.45 - 5.4. So Nikki's post-ACTH result is actually right within the desired range. Her "pre" number is indeed very low at .7, however. We used to think that the pre number did not make much difference, but we are now being told that the pre number probably should not drop any lower than at least 1.45, either. So based on that info, yes, it does seem as though a dosage decrease would be warranted. And it also seems possible to me that Nikki may have been reacting to an imbalance in her blood chemistries on Saturday -- that's why the lab testing would be important.

Also, do you know whether Nikki's Cushing's is caused by a pituitary or an adrenal tumor? Pituitary tumors usually remain very tiny, but sometimes they can enlarge to a size that puts increased pressure elsewhere in the brain. It appears that treatment for Cushing's can sometimes cause the tumors to enlarge more quickly. Seizures are actually not the most common symptom of enlarging pituitary tumors, but they can happen. So that is another possibility.

Having said all this, I currently have a dog who does not have Cushing's but started having grand mal seizures for no reason that we have ever been able to figure out. Her seizures are well-controlled with medication, so I currently just keep my fingers crossed that nothing really ominous is going to surface for her! But the point being, Nikki's seizure may just have been a one-time event. And if not, the cause may have nothing at all to do with Cushing's. But if it were me, the first place I'd start is by ordering a thorough blood panel. Perhaps this has already been done, and if so, we'll be anxious to hear the results.

By the way, for your info, here is a link to the U.S. Product Insert for Vetoryl. It contains a lot of useful information about treatment monitoring and documented side effects of the drug.

http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

Marianne

molly muffin

01-20-2014, 06:03 PM

Hello and welcome to the forum.

I am wondering if the low pre cortisol .7, might have dropped even lower or in fact might be too low for her and throw her sodium/potassium off, which can cause seizures or what appears to be seizures. Did the vet check her electrolytes since or at the time of .7 result?

I would if she is not better since removing the trilostane, take her in for her electrolytes to be checked.

Sharlene and molly muffin

Debbie

01-20-2014, 07:02 PM

Thanks for the replies. I apologize in advance I am not good with posting and don't know how to quote other peoples posts yet or anything. I will try to figure it out but wanted to try to answer some questions.

I have many test results, not sure which you would want me to post? I have full bloodwork including urinalysis from May. I have ACTH and hormone panel from Univ of Tn and Abdominal Ultrasound from May. I have Dex Supp test from July. I have ACTH from July. I have 2 ACTH from August and 1 from Sept.
Her most recent testing was Jan 14th and I do not have a copy of the results yet. She had full bloodwork with urinalysis and ACTH. Her Dr said her blood work was fine except her ACTH was low. I do not know if he specifically tested for electrolytes, would that be part of the regular full bloodwork? I have the copy from May, what would I look for?

I did not realize Trilostane could cause seizures, thank you for that information.

I had my dates wrong, she was diagnosed with cushings in May and I started her on melatonin & lignans at at that time but did not start the Trilostane until August 2nd.

Her seizure on Jan 18th she was sleeping in a dog bed next to me and when I looked down at her she was laying weirdly on her back/side with her neck/head craned back real far like she was trying to smell something. First I just thought she was being weird then realized she was "stuck" like that. I went to touch her and she kinda flopped into a sphinx position and had her legs clenched up tight next to her body and was making weird moaning noises. She looked very strange. We had a dog in the past that had seizures so I was pretty sure that is what it was, but I don't know for positive. Then she relaxed and went back to sleep. Before she went back to sleep I made sure she could stand up and walk around etc.

The bloodwork from May includes sodium and potassium and T-4 and they did the same one on Jan 14th but I don't have the results yet.

Nikki was diagnosed with pituitary cushings.

Should I have her bloodwork redone even though I just did it 4 days before the seizure? What specifically would I ask for if I wanted to have her electrolytes checked?

She has been acting perfectly fine and has not changed any since removing the trilostane. It has only been 2 days though. Last does was Sat 01-18 and he wants me to wait until this Thurs or Fri to restart it (the lower dose).

Thanks again! debbie

labblab

01-20-2014, 09:40 PM

Debbie, thanks so much for this additional info -- you're doing a great job! We definitely don't want to stick you with having to type out all the pages of test results, so usually what we ask for are just those values that are either too high or low (as well as the numbers that constitute the normal range for that laboratory). For right now, though, my main interest would be all the numbers for the diagnostic Low Dex test, as well as all the ACTH tests. Also, when you get the actual numbers for last week's labwork, please confirm whether or not there are indeed any abnormalities at all. Cushpups do typically exhibit certain liver elevations (ALKP, ALT), as well as higher levels of cholesterol and triglycerides. There can be some other abnormalities, as well. So I don't know whether your vet means that all the labwork was totally normal, or instead just that nothing new and worrisome appeared this time around.

If there truly aren't any unexpected red flags, I don't think you'd need to repeat the other labwork now, since Nikki was tested just four days before the episode. And yes, the electrolytes would already have been performed as part of a basic blood chemistry panel (it is a sodium/potassium imbalance that typically corresponds with trilostane overdose).

Aside from the seizure, has there been anything else "off" about Nikki's behavior? If not, and if all her labwork truly is status quo, it seems to me to be less likely that trilostane is the culprit. But that doesn't change the fact that lowering her dose seems prudent. In fact, I'm not sure whether or not the manufacturer of Vetoryl (Dechra) might recommend even a longer "break" for her than just these few days before starting back, even at a lowered dose. The U.S. office has technical reps on staff who are happy to talk with vets, and owners too, about questions such as this. Here is their contact info, and they will respond to either phone calls or email:

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

It's possible that this seizure may have been a one-time event that had no relation to the Cushing's. When my own dog had her first seizure, I learned that isolated unexplained seizures are not all that uncommon in dogs. The issue will be whether or not it repeats. So I don't know how much more detective work you will want to launch into right at this point. If Nikki otherwise seems to be fine, you may want to adopt a wait-and-see approach for the moment. Is your vet suggesting any further diagnostics right now?

Marianne

Harley PoMMom

01-20-2014, 10:19 PM

Hi Debbie,

Did the vet tell you that the Trilostane has to be given with food for proper absorption? And, are the monitoring ACTH stim tests being done 4-6 hours after her dose of Trilostane?

Hugs, Lori

Debbie

01-20-2014, 11:36 PM

Marianne, here are the numbers for the tests you asked about.

07-2013 (before starting trilostane) dexamethasone suppression test
time 1 0900a time 2 100p time 3 500p
cortisol sample 1 2.9 range 1.0-5.0
cortisol sample 2 0.7 range 0.0-1.4
cortisol sample 3 2.6 (HIGH) range 0.0-1.4

ACTH tests
05-2013 (before starting either trilostane or melatonin/lignans)
The results of this test are on a strange page with the hormone results too so not sure how to interpret them but what it says under cortisol ng/ml result (baseline) 31.8 Normal range 2.1-58.8
then under result (post ACTH) 287.4 normal range 65.0-174.6

The other ACTH tests are all standard looking done by Antech labs.

ACTH 07-2013 (before starting trilostane)
Sample 1 2.7 Range 1.0-5.0
Sample 2 16.1 Range 8.0-17.0

ACTH 08-2013 (2 weeks after starting trilostane)
sample 1 0.7 LOW Range 1.0-5.0
sample 2 6.4 LOW Range 8.0-17.0

ACTH 08-2013 (I think we did this one as she had vomited and we wanted to make sure she was okay)
sample 1 2.9 Range 1.0-5.0
sample 2 10.1 Range 8.0-17.0

ACTH 09-2013
sample 1 1.7 Range 1.0-5.0
sample 2 5.7 LOW Range 8.0-17.0

I don't have the results from last week yet but over the phone he said sample 1 was .7 and range was 1.0-5.0 and sample 2 was 3.7 and range was 8.0-17

So it definitely looks like she has been low a lot. It almost looks like she doesn't even need very much medicine she is only taking 4 mg per day and she weighs 8 1/2 lbs. and now he wants her on 3 mg per day. I did take her to an internal medicine specialist (endocrinologist I think) who specializes in Cushings, Diabetes etc and she confirmed as well that Nikki had cushings.

I will have the Dr fax or mail me the full results so I can look at the full bloodwork results.

I am not noticing anything else "off" about her behavior. She is acting normal and so far eating/drinking normal. The reason we started testing her last year was she was drinking large amounts of water.

That is interesting about maybe her needing a longer "break" from the medicine. Do you think they would really tell me their opinion on that if I called? I can try to call them tomorrow.

Lori,

Yes, I give the Trilostane with food. And the testing is done between 4-6 hrs after dosing. In other words I give her the meds at 1030 and drop her off at 2:30pm. They draw the first blood around 3pm I think and the 2nd around 4pm. That is correct, right? I think I read somewhere that it was supposed to be 2-4 hours afterwards or something so that is why I was wondering.

thanks, debbie

labblab

01-21-2014, 08:04 AM

Hmm...there are a few oddities regarding these results. But starting off, we can convert the initial May UTK ACTH results into ug/dl units so they'll conform with the others. They would be:

Pre-ACTH: 3.2
Post-ACTH: 28.7

This result is elevated above the normal range and would be consistent with conventional Cushing's. So is there a reason why you decided not to start trilostane treatment at that time, and instead waited to perform the LDDS in July?

The LDDS is indeed consistent with pituitary Cushing's. But here's the first odd thing: her July pre-treatment ACTH is now down to 16.1, which is within the normal range. The ACTH does have a higher "failure rate" than the LDDS as far as registering a false negative in a dog who truly does have Cushing's, but this is somewhat of an odd scenario to me: seeing the ACTH elevated at one time, but later fall back within normal range in the absence of treatment. Out of curiosity, when did you see the specialist: before or after this second ACTH?

Moving on to the monitoring ACTHs, I first want to repeat that the reference range you've given for the monitoring tests is incorrect for a dog being treated with trilostane. The desired post-ACTH range is between 1.45 - 5.4 ug/dl, with results up to 9.1 permitted as long as all symptoms are resolved. So Nikki's post-ACTHs have never dropped too low -- it is the couple of "pre" readings that are lower than desired. This is one piece of the puzzle that I'd want Dechra's feedback on.

However, looking at the series of monitoring tests, the next oddity is that her results have gone down, then up, then down. Has she remained on the same dose throughout the whole time? Had you temporarily discontinued the drug prior to the test at the time she had vomited (or might she have vomited up the drug)? If so, that would explain why the result was higher that time. If not, it is odd.

Before writing any more, I will wait to hear back from you regarding these questions. Oh, and just a couple more :o. Can you give us the written summary for the ultrasound, and were there any other issues besides the excess thirst and urination that you noticed pretreatment?

Marianne

Debbie

01-21-2014, 05:32 PM

Marianne,

Thanks for converting the Univ of Tenn lab results. That is very helpful. The reason we did not start the Trilostane after those results was because my vet wanted to try just the melatonin and lignans first, he said some dogs can be helped with just that and do not need to go on the prescription medication. So he said to try it for at least 30 days and then retest. Well then I started doing some research and discovered it was good to get a consult with an Internal Medicine specialist so we had a consult with her in June. The specialist is the one that did the LDDS test in July.

Her July pre-treatment ACTH may have been lowered by the melatonin and lignans, do you think? The LDDS test was done July 9th and the ACTH was done July 30th.

Regarding the reference range I gave on the test results, thanks for clarifying that. I asked my vet about the different ranges but I never understood properly the way he explained it. It DOES have different numbers at the bottom that say post-trilostane 1.5-9.1 like you said but at the top it has a different range. So I should always go by 1.5-9.1 with 1.5-5.4 being optimal, right?

Should I try to call Dechra and ask why those pre numbers might be so low?

She has remained on the same dose the whole time 4 mg per day, given once per day in the morning. The test done on August 30th she did not have the drug that day as she had vomited the day before. She had been given the drug August 29th in the morning, she threw up about 5pm and I called the vet and he said bring her in as early as possible the next day without giving her the drug and he would test her. So that day, for that test, no drug.

All the other tests she had the drug 4 hrs before I dropped her off, exactly. And it was given with food.

The written summary for the ultrasound 05-15-13:

There is a sonographically mildly enlarged liver with homogeneous dense parenchymal arachitecture and the liver is mildly increased in echogenicity compared to the falciform fat. The liver lobar margins are smooth and there is a prominent gallbladder wall with moderate amounts of partially immobile echogenic sediment in the lumen. There is a gastrointestinal wall thickening with prominent irregular mucosa. The stomach wall measures up to 6.4 mm and the intestinal walls measure up to 4.9 mm. There is a mildly enlarged, hyperechoic pancreas and there are bilaterally mildly enlarged nodular shaped adrenal glands. The left adrenal gland measures up to 7.5 to 8.4 mm and the right adrenal gland measures 8.3 mm.

Diagnosis/differentials:
The changes in the liver could be most consistent with vacuolar hepatopathy with billary stasis and r/o coexisting cholangiohepatitis and r/o a developing gallbladder mucocele. Neoplasia would be less likely at this time. There is a gastroenteritis with mild pancreatitis present most likely due to dietary causes. The adrenal findings could be due to early Cushing's disease (pituitary dependant).

Recommendations:
Work up for Cushing's disease could be performed and dietary modifications may be necessary. Symptomatic therapy for a hepatopathy/bilary stasis, pancreatitis (actigall, antibiotics, denamarin, VitE, omega fatty acids) and gastroenteritis could be initiated as clinically indicated. Recheck as indicated monitor the findings.

That's it, please excuse any typos. :)

I did change her diet after that to homemade due to remarks about dietary problems and now she is eating The Honest Kitchen food and doing good on that.

The things I noticed pre treatment were increased drinking and seeming more ravenously hungry. She has always been "food motivated" since we have had her (about 3-4 yrs) but she started stealing tissues out of the trash and eating them, things like that. Other than that, she had hair loss on her chest which I had not really noticed too much until it grew back after she started the meds.

Thank you SO MUCH for your help, it is much appreciated!

debbie

goldengirl88

01-21-2014, 05:59 PM

Hi Debbie:
Welcome to the forum. Sorry your baby is having problems. I just wanted to say I am a little confused about the dosing you say you are giving. You said 4mg a day right? Vetoryl does not come in 4mg. Are you meaning trilostane? If so I don't think Dechra will help you if you are using another product. I believe they only advise you on Dechra's product so I don't know as contacting them will do you any good . Blessings
Patti

Debbie

01-21-2014, 06:09 PM

Hi Patti,

I am getting Nikkis' Trilostane at a compounded pharmacy as she needs such a small dose. At first I was using a liquid but now it is a capsule. It does say TRILOSTANE 3MG on it (used to be 4mg). Do you think they are using the real Trilostane or could they be using a generic? Should I ask them before I call Dechra? Or does Dechra not help you if you are using a compounded product?

thanks, debbie

labblab

01-21-2014, 06:12 PM

Hi Guys, I'll try to get back by again later tonight to add a lengthier reply. But Patti, I would expect Dechra to be willing to talk to Debbie because she has no choice but to use a compounded product since Nikki weighs so little and is taking a dose that is not available in brandname Vetoryl. It may even be the case that the compounder is using Vetoryl as the basis for the reformulated capsules.

I think Dechra is more likely to be huffy when it is apparent that an owner is opting to substitute compounded trilostane solely to avoid the cost of buying Vetoryl -- in other words, when an owner is dosing with 29 mg. of compounded trilo rather than 30 mg. of Vetoryl.

Marianne

goldengirl88

01-21-2014, 06:17 PM

I don't think they can legally advise you on someone elses product as they gave that impression to my vet when he talked this over with them. They may talk to you in generic terms about trilostane, it is worth a try all they can do is say they can't help you.

goldengirl88

01-21-2014, 06:26 PM

Nikki:
You are doing real good with all of this so just keep up the good work and things will be alright. Blessings
Patti

Debbie

01-21-2014, 07:06 PM

Well I called my pharmacy and they don't use Trilostane made by Vetoryl. (Or is Vetoryl the name of the drug and Dechra the name of the company?) So I guess that won't work to call Dechra. They said they get a Trilostane powder and compound it themselves. They said they used to have to get it from Vetoryl (from England) and have to compound it from that but about 5 years ago they were able to start getting it directly in a powder.

debbie

labblab

01-22-2014, 09:20 AM

OK, finally back again! Thanks again for the additional info. Yup, knowing that Nikki's trilostane was withheld the day after she vomited helps make sense of that one higher reading. And as far as contacting Dechra, I honestly don't know whether or not they'd consult with you under these circumstances. They still might, but it may not even be necessary, anyway, since lowering the trilo dose as your vet has advised may eliminate the issue altogether.

I apologize for making things seem even more complicated for you, when all you came to us for was some advice about the seizure :o. It sounds as though, overall, Nikki had been looking and doing well. And hopefully this will continue on the decreased dose, along with no more seizures! So there is no need for me to create unnecessary worries for you!

But just to file away for future reference in the event that more question marks arise, I don't think the melatonin could have lowered Nikki's cortisol that dramatically. Our experience here is that the combo of melatonin/lignans is prescribed for management of elevated adrenal hormones other than cortisol. I don't believe they have a significant effect on cortisol itself. That's why I was kinda hoping you'd seen the specialist subsequent to that second ACTH test -- I would have been curious as to her take on that. If Nikki were to have another seizure, I think I would return to her for another consultation and her feedback re: the whole big picture about the manner in which things have progressed after your last visit to her, especially since there were some other abnormalities noted on the ultrasound. For instance, I don't remember the specifics now, but when my Peg started seizuring, I vaguely remember that there were liver/gallbladder/pancreatic issues that could have been responsible.

In the meantime, I believe Patti's Tipper is another dog who had some low "pre" values even though the "posts" were within the desired range, and Dechra's advice was to lower the dose just as your vet is doing now. So hopefully Patti will be back by here again and can fill in some more specifics as to how things have proceeded for Tipper. We'll keep all fingers crossed that the dosing decrease does the trick for Nikki!

Marianne

goldengirl88

01-22-2014, 10:20 AM

Hi Nikki:
I can add a little here about Tipper with her low pre number. We were told by Dechra that when the pre number goes low that the post will surely follow, so they wanted Tipper's dosage lowered. She went from 30 mg Vetoryl to 20 Vetoryl and 6 trilostane then to 20 Vetoryl and 8 trilostane so her current dose is 20 Vetoryl and 8 trilostane and she is exhibiting signs of real hunger so I am having an ACTH at the end of the month and if the cortisol is climbing I will have to go back to 30 mg Vetoryl and just watch her closely and have more ACTH's which I hate doing to her but have no choice.
Now about the seizure. Can you explain to me what exactly it looked like. The reason I am asking you is the Neurologist Tipper sees is trying to determine if Tipper is having focal seizures or tremors. I am wondering if your dog was really having a seizure or if it could have been tremors?? I know that the neurologist told me he would bet on the Vetoryl/trilostane as the cause of it. It sort of falls in line with the other things you are saying happened on trilostane. I am hoping that things are ok now. Marianne is an expert on all this so she will be your best help. Hope some of Tipper's experience helps you. If you have any more questions please let me know I will be glad to help whenever I can. Blessings
Patti

Debbie

01-22-2014, 02:05 PM

Marianne,

Thanks again for your help! Don't worry about making things seem more complicated for me, I am really getting interested now in fine-tuning this and providing the best care possible for my little friend. You all have given me a lot of good information and I have been going over it.

So it sounds like I don't really need to try to contact Dechra, in your opinion, right? What would I ask them anyways? If I should lower the dose?

Do you think 5 days is a long enough break in the Trilostane before I start her on the lowered dose? Or is that something I should ask Dechra? My vet wants me to restart her this Saturday but I am a little worried.

So you don't think there is any benefit to the melatonin/lignans? Do you think there is any harm? My vet says they can have a cortisol lowering effect, but you have not found that to be so in your experience? I don't want to give her anything she does not need or could be harmful (obviously) and I am sure my vet would go along with me if I decide not to give it to her but I do want to continue if there is any chance it's helping.

I will definitely go back to the specialist if Nikki has another seizure, do you think it is okay to carry on with her regular vet if she seems okay from here on out? Do most of you see your regular vets or do you go to specialists?

I read the information from Dechra about Trilostane and see they recommend ACTH test every 3 months after they are stable and it looks like also recheck for electrolytes and I think it said kidneys, etc. So does that mean every 3 months forever they need an ACTH test and a full bloodwork panel?

Thanks! debbie

Debbie

01-22-2014, 02:07 PM

p.s. I just realized I am asking you an awful lot of questions! (sorry) If I am getting annoying please just tell me to shut up!! :)

Debbie

01-22-2014, 02:19 PM

To Patti:

Thanks for the information about your Tipper. It sounds like we are doing the right thing then just by lowering the dose as that is what Dechra told you to do. Did they say they wanted to get her pre-number above a certain amount before you stopped lowering the dose? But now you have to raise it again because she's getting too hungry, right? That's sad, I'm sorry about that. It is really hard when they are ravenous and you feel so bad for them.

Regarding the seizure, she had been curled up sleeping in a dog bed on the floor next to me and it had not been more than a couple of minutes since I had looked at her and she was on the other side of the bed kind of on her back/side with her head/neck craned back real far up against the edge of the bed. Almost like she had started to roll onto her back so I could pet her belly then craned her head way back to smell something interesting. Her eyes were open. I thought this was weird as there was nothing to smell in the room I was in and it definitely was not a comfortable or normal looking position. Then I realized she was "stuck" or stiff and I touched her and she kinda flopped over into a sphinx position and pulled her legs up real tight to her body like a fetal position but she was upright, not on her side. Once again she seemed stuck or stiff. No shaking or tremors though. I put my hands on her to comfort her and then her body relaxed and she tried to hop out of the bed and I held her for a moment to calm her as she seemed "weirded out". Also she had been making weird moaning noises once she went into the sphinx position, not while on her back/side though. Once I made sure she could stand up and walk, she curled back up in the dog bed and went to sleep.

Does Tipper's neurologist think the Trilostane will cause more seizures in her? I hope not. I didn't even realize it could cause that so I am glad I came here to ask.

Thanks for your help! Debbie

goldengirl88

01-22-2014, 02:44 PM

He is thinking the trilostane can cause tremors. He is not sure which one Tipper is having yet. He will determine that I guess after two weeks of meds he gave ordered for her. What you are describing definitely sounds more a seizure. I hope not for both your sakes. I am so sorry your are having these problems. Hope it gets better. Blessings
Patti

labblab

01-22-2014, 04:13 PM

p.s. I just realized I am asking you an awful lot of questions! (sorry) If I am getting annoying please just tell me to shut up!! :)
You are not annoying at all!! :) ;)

It may be tomorrow before I have the chance to answer back, though. But probably you are fine to start back with the Vetoryl on Saturday since you will be lowering the dose.

More later.

Debbie

01-22-2014, 04:36 PM

okay thanks, I was thinking of calling my vet and asking if I should re-start the melatonin/lignans too or just the Trilostane and if I should maybe wait longer to re-start anything but I will wait til I hear back from you. I'm not doing anything until Saturday at the earliest.

debbie

labblab

01-22-2014, 05:28 PM

You know, that is a good question about the melatonin. Normally there are no issues with side effects or safety so there is little risk in using it, and it is certainly true that Nikki's cortisol level reduced after starting it. I am remembering, though, that back again when my Peg was diagnosed, I read some conflicting info about the advisability of giving melatonin to known epileptic dogs. Historically, a lot of sites seemed to recommend giving melatonin so as to lessen seizure activity so I was all set to give it to Peg. But in the last couple of years, there has been some newer research that suggests that melatonin may sometimes do the reverse and stimulate seizures in epileptics.. So I've never given it to her. On the spur of the moment, the best thing I can find right now is this article that summarizes the very contradictory and confusing situation with humans, but I'll bet it might apply to dogs, too. You might want to try to research this more on your own, especially trying to find the newest research available. Again, we don't yet know whether Nikki will ever have another episode. But I agree that what you described sounds like a seizure to me.

http://epilepsytalk.com/2012/11/19/epilepsy-and-melatonin-yes-no-or-maybe-so/

Marianne

goldengirl88

01-22-2014, 05:36 PM

Nikki:
I totally agree with what Marianne said as I had been researching seizures because of Tipper. I did read somewhere to where it said that melatonin would help, but it could have been an older study. If the newer ones say it may increase seizures I would never give it. Thank God for Marianne!! Blessings
Patti

Debbie

01-22-2014, 06:02 PM

well that just confuses things! LOL Do I give melatonin with possibly less Trilostane or no melatonin with possibly more Trilostane? I guess I could continue with everything and of course if there is another seizure discontinue melatonin and see the specialist again. This seems to be one of those cases where more information is not necessarily a good thing! LOL Just kidding, I really do want to learn more about all of this and make the best decision possible.

goldengirl88

01-22-2014, 06:30 PM

Nikki:
Sorry we are not trying to confuse you but rather cover all the bases to keep your baby safe. You will find with Cushings you have a lot of times where things seem confusing, but it will all get straightened out. Just be real watchful of your baby. I am praying for no more seizures. God Bless You Both
Patti

Debbie

01-22-2014, 06:43 PM

Oh I understand and I really appreciate all the help and information. I feel like I have already learned a lot and it will help me make a better decision.

labblab

01-23-2014, 11:10 AM

OK, Debbie, I'm finally back again with answers to those questions you had asked. I hope this info helps! But bear in mind, I am not a vet and I am just giving you my personal thoughts as to how I'd likely proceed if Nikki were my own.

Marianne,

Thanks again for your help! Don't worry about making things seem more complicated for me, I am really getting interested now in fine-tuning this and providing the best care possible for my little friend. You all have given me a lot of good information and I have been going over it.

So it sounds like I don't really need to try to contact Dechra, in your opinion, right? What would I ask them anyways? If I should lower the dose?

I don't think there's any doubt that they'd agree with your vet about lowering the dose. I just find it a bit odd that Nikki's "pre" has been as low as .7 along with "post" values that have been safely within the desired therapeutic range. Under the circumstances, I guess I would have expected her "post" results to be lower, too, and I am wondering if Dechra would think it unusual at all. But this is mainly my own curiosity, and therefore not something I think you have to pursue as long as Nikki's "pre" value rises acceptably as a result of the dosage decrease.

Do you think 5 days is a long enough break in the Trilostane before I start her on the lowered dose? Or is that something I should ask Dechra? My vet wants me to restart her this Saturday but I am a little worried.

If you did contact Dechra, yes, this is a question I would have asked them. But in truth, without a crystal ball, probably nobody knows what the ideal timing would be. Since you always monitor Nikki so closely anyway, there's probably no reason not to proceed as your vet has advised. If Nikki develops any problems, you'll know to stop the medication again. Plus, I'm assuming your vet will want her cortisol retested again within 2-4 weeks. One cost-saver might be to only do a resting cortisol to begin with, just to make sure that the "pre" value is indeed increasing since it's that "pre" value that is worrisome right now. And then you could wait a few more weeks after that before performing a full ACTH to see how the decrease has affected her "post" value as well.

So you don't think there is any benefit to the melatonin/lignans? Do you think there is any harm? My vet says they can have a cortisol lowering effect, but you have not found that to be so in your experience? I don't want to give her anything she does not need or could be harmful (obviously) and I am sure my vet would go along with me if I decide not to give it to her but I do want to continue if there is any chance it's helping.

Per my previous reply to you, normally melatonin/lignans is thought to be a benign treatment. But with the new suspicion of this seizure, I guess if it were me, I'd probably hold off on starting back with that. Even though melatonin may have some cortisol-lowering benefit, trilostane is by far more effective in that regard, so you don't need to worry that Nikki's cortisol cannot be lowered sufficiently through trilostane alone. Since you are trying to identify a cause for the seizure, I think it makes more sense to only add back one variable at a time. For instance, if she has another seizure while she's "off" the melatonin, at least you'll know that it can't be the cause and at least one variable has been eliminated.

I will definitely go back to the specialist if Nikki has another seizure, do you think it is okay to carry on with her regular vet if she seems okay from here on out? Do most of you see your regular vets or do you go to specialists?

If Nikki doesn't have any more problems, I'd probably just continue on with my regular vet if I felt happy with the care and attention I'd been receiving. Some of our members have shifted their care exclusively to specialists, but probably the majority continue with their regular vets alongside periodic consultation with specialists as the need arises.

I read the information from Dechra about Trilostane and see they recommend ACTH test every 3 months after they are stable and it looks like also recheck for electrolytes and I think it said kidneys, etc. So does that mean every 3 months forever they need an ACTH test and a full bloodwork panel?

That is Dechra's formal recommendation. Unfortunately, it does seem as though dogs can end up needing their trilostane dose tweaked throughout the course of treatment. But if Nikki ends up stabilizing on a specific dose for an extended period, you and your vet can decide if you think she can go longer between rechecks.

Thanks! debbie

Debbie

01-23-2014, 02:55 PM

Hi Marianne,

I understand you are just giving me your opinions, don't worry I always make my own decisions after getting all available information, I don't even blindly follow my vets advice if it does not make sense or I have not checked it out. I really, really appreciate your opinion though as it seems you have a lot of information I did not, and also you have caused me to think about a few things I had not previously thought about!

Yes, my vet wants to re-test her ACTH 2 weeks after restarting the Trilostane. I did not know about the possibility of testing just her "pre" value so I will think about that. I do have pet insurance for her, so I only have a co-pay, not the full amount, but it still add up. I may try to call Dechra and see if they will talk to me about how long to wait before re-starting it, but like you said, there may be no set amount of time.

Regarding the melatonin/lignans, I guess in my mind I was thinking the melatonin/lignans was less dangerous than the trilostane, so I would rather do the m/l and lower the dose of trilostane, but I see what you mean about ruling out as many things as possible. I think I will call me vet and get his opinion on this also. He started he our on JUST the m/l as he said he has many dogs in his practice that only ever need that and never have to go on prescription meds and we wanted to see if Nikki would respond enough to just the m/l. So in my mind it seems like if her cortisol keeps being low, we would just lower and lower and then completely remove the Trilostane if necessary and keep her on the m/l rather than remove the m/l and keep her on the Trilostane. But honestly now that she has had a seizure this may change the picture. Definitely something to think about.

As far as the routine testing, I think I will definitely have her ACTH done every 3 months forever, I was just wondering about the full bloodwork being necessary every 3 months. Usually I have her bloodwork done around every 6 months. On our younger dog we do it once a year, but Nikki is older. But with having cushings it sounds like you need to keep an eye on kidney values etc so do most people do the full bloodwork every 3 months too?

Think I am off the make some phone calls... thanks again for all your help, this has been great.

p.s. I added an avatar so you can see a pic of my little friend. :)

Debbie

01-23-2014, 03:15 PM

Okay I called Dechra and they were very nice. I told them her medication was being compounded as it was such a small dose and they didn't question me any further about it being "real" Vetoryl or anything. They said what my vet is recommending sounds reasonable, to have her off the medication until Saturday and then re-start at a lower dose and re-test after 2 weeks. They did say sometimes the disease can progress to a point where it can start to cause seizures in some dogs. In other words, it may have nothing to do with the medication, it may be just due to her having cushings. They said if she continues to have seizures I would need to have her checked out further. (of course)

And of course as we know, it could be something entirely unrelated.

Debbie

01-23-2014, 05:25 PM

I spoke to my vet and our plan is to re-start the Trilostane tomorrow at 3mg once per day and re-start the melatonin at 3 mg once per day instead of twice per day. So we are cutting it by 50%.
We are keeping the lignans the same.

And we are doing an ACTH after 2 weeks.

goldengirl88

01-24-2014, 09:17 AM

Nikki:
I just noticed your babys pre number was .7. That is exactly where my Tipper was. We stopped all meds for 4 days and then resumed a lower dose as her clinical symptoms came back. She was at 30mg Vetoryl when it happened and I started her back with 20 Vetoryl and 6 trilostane. So we went down 4mg. She is now exhibiting signs of higher cortisol and she is on 28mg combined so I may have to go to 30 again but scared her pre will go low. It is just a balancing act on our end. Hoping your baby does well when restarted again. Blessings
Patti

labblab

01-24-2014, 09:34 AM

Debbie, good luck with the dosage changes, and definitely keep us updated!

For what it's worth, since you are cutting back to once daily on the melatonin, you may want to give it in the morning rather than at night since Nikki's episode did occur during the night. Per that article link I gave you earlier:

In other words, while high pharmacological doses are able to decrease brain excitability and suppress seizures, smaller doses of melatonin (administered at night when melatonin levels in the brain are highest), can actually increase the excitability of neurons, making them more susceptible to seizure activity.

This process may be involved with certain forms of nocturnal epilepsy. Thus, seizures can be a side-effect of melatonin.
I haven't tried to track down the actual research citations that support this, but this was the kind of comment that made me nervous about giving melatonin to my Peg since her seizures were occurring overnight.

Marianne