Roark, 11 year old Yellow Lab, tried Trilostane and Selegiline - where to next?

[kpearce]

Hi all.

I will read through other stories, but wanted to share ours.

Our 11-year-old yellow lab Roark has Cushing's Disease and is suffering from dementia. He is constantly (20 hours a day) stressed and anxious. He pants a lot. He tries to crawl into small spaces. He makes a mess of the house trying to get into closets, bathtub, whatever. He is only happy when his nose/head are elevated at a 45 degree angle. He can't sleep. (Therefore we can't sleep.) (Do any of these symptoms indicate something other than Cushing's/Dementia?)

Beyond Roark's discomfort, this affects us as well. As I mentioned, one of us is up with Roark for a few hours each night. I cannot leave the house unless I absolutely must because of fear of what mess Roark will make. (I have a meeting today, so I am paying to board him at the vet's.) Yet I can't work here because he is too needy. He is also starting to 'herd' our toddler. (He is generally great with our toddler though and Roark's worst day, anxiety-wise, is always Monday when Toddler goes back to daycare.)

I am terribly sad that Roark is unhappy and that death is on the horizon. But I also do not know how much more we can do to accomodate him - we already aren't sleeping at night, I can't go to campus to work nor can I work from home, and we're considering keeping Toddler in full-time daycare this summer because it is too hard for 1 adult to deal with both Toddler and Roark all day (and this creates a greater financial burden). No one wants to visit or babysit because of Roark. We can't go out of town anymore. These things are not really sustainable.

What we have tried: Trilostane (caused diarrhea) and Selegiline (caused diarrhea). Currently he takes Tramadol for pain, Metronidazole for killing off bugs (he has tummy issues often), and recently the vet gave us Acepromazine as a sedative so that he (we) can sleep. (This makes him have cherry eye. Gross.) Vet suggested Benadryl as a mild daily sedative recently. Yes, I keep talking with the vet. She said that there is another drug but that it is pretty dangerous. She also suggested that we might go to see a specialist (that is 2 hours away). We're going to try the Selegiline again for a few weeks and switch to a different treatment that is "riskier." We're also switching to Prescription Diet bd. I just bought an Anxiety Wrap, a dog phermone diffuser and dog phermone collar.

At this point I don't know what to do. How much do these specialists cost? Can they do much? I've read that diet can help, but does it really? What about crating him? (He can get through baby gates easily.) What about doggy daycare during the day so that I can get some work done? How can we help him keep his nose/head at a 45 degree angle? At what point do we start seriously discussing putting him down? Our goals are to make him comfortable while also making our lives less stressful. Right now he is obviously not comfortable.

Thanks everyone. HUGS.

[labblab]

Welcome! I just wanted to tell you one quick administrative "note." In order to complete your registration, you need to check your emailbox (or spam folder) for a communication from us. Once you respond to that email, your membership will be finalized, and anything that you post will become visable on the the forum immediately. Until that time, your replies must be manually "approved" by a staff member before they are visable to the public -- so there may be a bit of delay between the time that you write your replies and the time that you actually see them.

We're so glad to have you with us!
Marianne

[kpearce]

Thanks. Nothing's popped up in Spam or Inbox yet. :(

[acushdogsmom]

Thanks. Nothing's popped up in Spam or Inbox yet. :(Your user account has just been manually approved.

[kpearce]

thank you!

[acushdogsmom]

You're welcome. :)

You may receive another e-mail confirming your registration. You don't have to reply to it, however. Your account is now fully activated.

[kpearce]

Here's Roark a few weeks ago with our toddler.

http://farm5.static.flickr.com/4029/4561189759_722e63e4b5_o.jpg

[Harley PoMMom]

Hi and welcome to you and Roark from me and my boy Harley. I am so sorry for the circumstances that brought you here but very glad you found this forum.

I am not that familiar with Canine Cognitive Dysfunction Syndrome but these articles I am posting a link for you have some good information about it, altho none do say anything about the 45 degree angle that Roark has to have his head at to be comfortable.

I, personally, do recommend an IMS because they have more experience with the pups that have complicated illnesses or are hard to diagnose. They usually also have the state of art equipment, like ultrasound machines, MRI's, to help with the diagnostic testing. The cost is a little higher but it is worth it.

Could you tell us more about Roark and his cushings...what tests were used to confirm his cushings? What symptoms led you or your vet to test for cushings in the first place? Has a chemistry panel/CBC blood panel been done on Roark lately? Was anything on there marked abnormal?

We are here to help you and Roark in any way we can, so ask all the questions you want and we will try to answer them the best we can, ok.

The articles:
http://www.petdrs.com/cds.htm
http://www.peteducation.com/article.cfm?c=2+1551&aid=1095
http://lbah.com/cds.htm

Love and hugs,
Lori

[kpearce]

Thanks Lori.

My partner is picking Roark up from the vet tonight and is getting all his labs and I'll post 'em!

Thank you!

[labblab]

Hi again! I'm glad the registration issues have all been taken care of. ;)

As you can see from my avatar, I'm a Lab lover as well :o. Lori has already asked you some good questions and provided helpful resources. I only have a couple of questions to add at this point. First, can you tell us a bit more about Roark's experience with trilostane. Can you tell us how much he weighs, and what dose of trilostane he was given? Also, how long did he remain on the trilostane?

Most commonly, diarrhea would be an indication that his dosage may have been too high. So I am hoping to get more info re: his experience with the medication. If Roark's Cushing's is totally uncontrolled at this point, that could account for a number of his issues. I would not yet give up on him, by any means! With effective treatment, you may see a significant change in him and in his behavior.

So please do tell us more...

Marianne

[BestBuddy]

Hi and welcome,

I have a little min poodle Phoebe (no cushings)who has geriatric issues. She takes selegiline and it has helped her a bit. She also likes to have her head elevated and luckily she is small enough to nurse with her head on my shoulder then I can place her in her bed with her head on a pillow and that works for us. When she gets up to pee during the night (usually twice) I have to nurse her back to sleep so I know how tiring it is.

I have not been able to find out if the head thing is because of neck or shoulder pain or helps with breathing. She is now 18yo so I just have to take every day and see how she is and enjoy the time I have with her.

Jenny

[kpearce]

Okay - here are Roark's stats (hopefully this is helpful!)

His weight fluctuates, but he is about 83 lbs. right now.

2/3/10:
Dexamethasone supression test
pre dexamethasone 11.6 HIGH
post 4 hr 5.6
post 8 hr 4.5

2/18/10:
ACTH Stimulation
pre-ACTH cortisol 6.3
Post-ACTH cortisol 26.0

Total health plus: - I'll only report on what is marked HIGH or LOW
Alk. phosphatase 1438 HIGH
ALT (SGPT) 198 HIGH
CK 328 HIGH
Cholesterol 426 HIGH
Neutrophil SEG 87 HIGH
Lymphoctyes 5 LOW
Eosinphil 0 LOW
Auto platelet 546 HIGH
Absolute NRUTROPHIL SEG 12180 HIGH
Absolute Lymphocyte 700 LOW
Absolute eosinphil 0 LOW
Ph from urinalysis 7.0 HIGH

[kpearce]

Thanks Marianne. Your lab looks great.

Roark was on 50 MG of Trilostane and weighs ~83 lbs. right now. Do you think that this is too much?

He was on it for 9 days.

As I recall (this was mid-February), he was having loose stools and I asked the vet and she said take him off of it.

Thoughts about this?

Thank you!

[kpearce]

Thanks so much Lori (and everyone).

I posted Roark's most recent blood work. I also have some blood work from him from September if comparison would help.

As far as our diagnosis, here's our story.

Winter of 2007 or so, we noticed that Roark was getting more lethargic and having looser stools. But he was 9, so we figured it was just old age.

Throughout 2007 and 2008, Roark was getting worse and worse with his loose stools. We took him to the vet a few times and they had no answers. He also started panting a lot and sometimes when we'd go on walks, he'd sit in the grass and not move.

I was on fieldwork for the spring and summer of 2008, but my partner reported that the loose stools continued. We had a housesitter for 2 months (my partner came to visit me on fieldwork) and the housesitter reported loose stools as well.

When I came back in the fall of 2008, I noticed that the panting has increased. I took him to the vet again and again nothing. At this point I was fed up and switched vets. Our new vet, upon one look at Roark said, "I'm pretty sure this dog has Cushing's." At that point she gave us the Tramadol and told us to keep an eye on things.

We then had a baby and not surprisingly, it was harder for us to keep an eye on Roark's health. But we were also home a lot more and were spending much more time with Roark. We all saw that Roark was in decline. Loose stools continued. This was most of 2009.

The Tramadol worked a bit but last fall (2009) I escalted with the new vet to see if we could get a formal diagnosis. We started doing the senior check ups then and by February 2010 we got a formal diagnosis of Cushing's.

That's when we started the drugs.

I like our new vet, but I wish that she was more hands-on with us. I now believe that I need to take matters in my own hands. I really appreciate all of your expertise. We love our dog and while our first priority is to ensure that he is comfortable, we'd also like to extend his life (as long as he is happy and comfortable, of course.)

Thanks again,
Katy, Walter, Thatcher and Roark

[zoesmom]

Hi and welcome Katy and Roark-

Love the picture. It says it all. Labs and kids - always a perfect combo. I understand how exhausting it must be with Roark's issues and a toddler. But based on what you've said, I don't think I'd give up on Roark just yet.

So the loose stools were going on long before the cush dx and trilostane, right? The cushings looks like a certainty. I can't say for sure about the CCD but perhaps many of the symptoms that suggest CCD would actually improve if his cushings was under control. The selegeline is sometimes used for the cognitive problems but in most dogs, it does little to help with cushings. I think the first step is to try and get Roark back on an effective cushings tx. Where in CA do you live? We have lots of members there and might be able to point you to a vet who can better help you.

We just lost our lab mix, Zoe, a month ago but she had soft stools for a long time and there is a fairly safe drug called tylan that does wonders for dogs with IBD issues. Is Roark still having the loose stools? And the CCD diagnosis was based on which symptoms? Correct me if I'm wrong, but right now, he's not on either the trilo or selegeline? The dose of trilo that you mentioned was not excessive for an 83# dog, but some big dogs need less and some small dogs need more. It just depends. Was another acth test run, after the 9 days of trilo tx? I'm assuming those acth results of 6 and 26 were before the trilo was started? If we can get some more details and specifics, maybe we can help you get Roark back to where his life is dogworthy again . . . and yours has some semblance of sanity!

Sorry for all the questions, but that's how it generally works here. Sue

[kpearce]

Thanks so much Sue.

We're in Santa Barbara - if any members have any ideas. We'd be willing to drive to Los Angeles if we had to, but obviously a vet around here is easier.

Our vet said that she could do a referral to an IMS, so I am going to call today to get that set up.

Roark's stool issues have been going on for 3 years or so.

6 and 26 were before trilo. I think that they didn't do the 2nd ATCH test because they took him off of the trilo.

The vet had us add Selegeline yesterday (upon my insistance) and Roark actually seems great today (Coincidence? Possibly!).

I'd like to try the Trilostate again.

I just want to say again, I really appreciate this hand-holding. We were 100% sure that we'd have to put Roark down yesterday and this is giving me some hope.

Thanks again,
Katy

[labblab]

I'm back again, and just want to "second" everything that Sue has said. If Roark was having loose stools long before starting the trilostane, I'm not sure why your vet decided to end the treatment after only nine days on that basis...:confused: It doesn't sound as if Roark had any chance whatsoever to adjust to the medication or benefit from it, which is too bad.

It is true that trilostane can cause diarrhea -- either due to overmedicating, or just as a side effect even when the dose is correct. But his starting dose was very low, so it seems less likely that he was overmedicated. And given his history, the diarrhea may not even have been related to the trilostane.

For what it's worth, my own Cushpup (my yellow Lab) also had intermittent loose stools prior to beginning treatment. Ironically, even though the treatment for some types of GI complaints is to administer steroids, my specialist told me that the chronic overproduction of cortisol associated with Cushing's can also result in GI inflammation. So successful Cushing's treatment can sometimes resolve pre-existing intestinal disturbances.

But I am rambling. And my point is just that it doesn't sound as though Roark was given a fair chance on the trilostane before it was discontinued. I do think that a number of his problems could be improved with effective treatment. Perhaps you or your vet could consult with a more specialized vet regarding Roark's situation? Many otherwise excellent general practice vets are just not that familiar with Cushing's. That's why many of us have ended up with Internal Medicine Specialists -- these are vets with additional training related to more complicated diseases. As Sue has said, perhaps one of our other members in CA may be able to point you in the direction of a reputable specialist...

Marianne

[zoesmom]

We have a member, Annie's mom, who is in SB. She doesn't stop by the site every day, but I have her private e-mail so wil contact her and perhaps she can give you the name of her vet. Don't remember if she is satisfied or not, but if not, I seem to recall (from our previous cushings board) that there are some good ones further south from you, but like way north of LA for sure. Let's see what else pops up as suggestions, too. Sue

[labblab]

Katy, I'm back again...I was writing my last reply just as you were posting your's. So in terms of IMS referrals, here's a link to a search that I just did for California (do see that there are five additional pages beyond the first page of the link):

http://www.acvim.org/websites/acvim/index.php?p=228

Also, among the listings you'll see Dr. David Bruyette at VCA West Los Angeles...I know you'd rather not drive to L.A., but Dr. Bruyette is a nationally-known authority on Cushing's. Here's a link to a video of his about trilostane dosing that we maintain on our important resources forum:

http://veterinarymedicine.dvm360.com/vetmed/Medicine/Trilostane-dosing-and-monitoring-recommendations-4/ArticleStandard/Article/detail/567360

He really might be a referral vet that you'd want to consider, given Roark's history of problems and Dr. Bruyette's Cushing's expertise.

Marianne

[kpearce]

Thanks everyone!

It does seem like Roark wasn't given a fair shot with the Trilo. I will push the vet to re-try.

I called our vet this morning and asked for a referral. Their IMS person is mobile and comes to their office.

I think that we'll give that IMS person a shot, especially if it is soon. I'll talk to her about going back on the Trilo.

Bruyette in LA sounds like a really good resource as well. Maybe if this IMS doesn't work out (and quickly), I can call him. Or maybe I should call him now...

Thanks SO much everyone. I can't express to you the relief that you're giving me.

Katy

[jrepac]

It really does sound like the Loose Stools are a separate issue from the Cushings/Dementia. And, are you sure dementia is present? From what you describe, Cushings disease could drive your lab to the behaviors you describe. Your ACTH numbers are indicative of Cushings, but not horribly high (subjectively). How long were you on Anipryl? Anipryl is used for both Cushings & CDS and can help with the symptoms you describe. But, you may need to give it a go for 2 months to really determine if it is working. Diarrhea is not a typical side effect; in fact, anipryl has very few side effects, which is a plus.

And, as the others have inquired, how long were you on the trilo?

Some of these treatments do take time to "kick in".

I'd seek out another vet's opinion on your Lab....seems like the bowel problem is preventing you from treating the cushings, so that may need to be addressed first. Diet change may help.


Jeff

[mypuppy]

Hi Katy and Roark,
I haven't been keeping up to date or posted to your thread before, but wanted to say a belated welcome from myself, Jeanette and my 7 year old chocolate lab, Princess. Princess suffers from pituitary cushings and is currently on trilostane as well (1 60 mg pill) per day. I am so sorry that your precious Roark has not been able to be successfully treated due to his digestive issue. When you say he has loose stools, does it mean full blown diarrhea or just bulky but loose? Just curious. I'd have to agree with what Jeff suggested in his last post and perhaps get a second opinion and definitely a diet change helps at times. I'm not sure what brand food Roark has been on? I'll share my personal experience with Princess regarding diet. For the longest time, she would vomit her entire meals, almost every week or so. I didn't know what was going on with her. Finally I switched her to Merrick brand (dry and wet), and low and behold, she stopped the throwing up episodes almost immediately. I have kept her on this food ever since and she has done wonderfully on it. I also learned that this food does have digestive elements added to it, therefore, if so, it has made a huge difference. But again, that is my personal story and not to be compared with your Roark until you have followed up with a thorough evaluation with a specialist. I certainly do hope you get all the answers in order to bring him back to health and get your old pup back to enjoy. I look forward to some positive progress on him. In the meantime, please hang in there, don't give up, he's precious, and btw, so is your little toddler. I have a 5 year old and 13 year old. You can check out pics of them in my albums. Take care of you and I'm sending you some tight hugs and lots of belly rubs for Roark. Luv ya bunches, xo Jeanette and licks, Princess

[lulusmom]

Hi Katy and welcome from me too.

You've already received some excellent input from members so I won't be an echo. If the mobile IMS doesn't work out, you might want to seriously consider consulting with Dr. Bruyette at West Los Angeles VCA. Given Roark's issues, it might be worth the drive. Dr. Bruyette is the Medical Director for VCA West Los Angeles and he's not only a reknown expert on cushing's, he is also the developer of Anipryl (Selegiline), and a reknown expert on CCD. He also sits on the Board of Directors of UCLA Radiation Oncology and is involved in ground breaking research on hypophysectomies, which is the surgical removal of pituitary glands. This surgery is done routinely in the Netherlands but for some reason it's not caught on here in the states.

One of our members, Gina, has a beautiful baby named Lucy, who was part of that research and several months post surgery is doing beautifully. Lucy had a very large pituitary macroadenoma that was causing severe neurological problems. I mention this because there may be a remote possibility that some of Roark's issues might be neurological as opposed to dementia problems.

I am including a link to Gina's thread as well as to VCA West Los Angeles.

http://www.k9cushings.com/forum/showthread.php?t=1009 (Archived original thread)
http://www.k9cushings.com/forum/showthread.php?t=534 (Updates on Lucy)
http://www.vcahospitals.com/west-los-angeles

This is all food for thought and no matter what you decide, I'm pulling for you and Roark.

Glynda

[Annie's Mom]

Hi Kate,
This is Barb (Annie's mom). I also live in Santa Barbara. I will send you a PM (private message). I recently switched vets here in SB to one I feel has a good grasp on Cushings. I also am familiar with an IMS. If you can't access your IM, write back here. The men and women on this forum have been a life saver for me and Annie! You are getting great advise and direction here ! I am new to all this, but I have learned alot in the last 6 months! Barb

[Annie's Mom]

Katy,
I had to rush to a meeting earlier. The IMS that cared for Annie when she was hospitalized last fall (for severe pancreatitis and complications) was Dr. Andrea Wells at CARE Hospital. She has many Cushings pts that she cares for in her daily practice. My current GP vet consults with her. I was also told there is a good IMS in Ventura at VMSG (Dr. Ortega). I sent you a private message with contact info. Barb

[kpearce]

Hi all.

Sorry for the long absence.

Since my original post, we have lots of updates.

Roark started seeing a local IMS and she helped us get our dosing straight. He's on 30mg of Trilostane, although we're working up to 45mg soon.

Roark had a STIM test last week and was post 9! His anxiety is quite improved as well.

We've had some trouble with his appetite, but this is par for the course, right?

Anyway, thanks everyone!
Katy and Roark

[BestBuddy]

Hi Katy,
That all sounds like good news. A post of 9 is worthy of a celebration. If you have not been on the 30mg for long it is possible that that number will come down even more without an increase. A lack of appetite in the beginning is pretty normal but if Roark stops eating then you need to check with your IMS. Did your IMS say what post number he was trying to achieve? Some dogs do better with a particular range some higher and some lower.

Jenny