Tucker Cushings and Muscle Weakness

[CJandTucker]

Hi,
I am new to the forum. My Old English Sheepdog, Tucker, was diagnosed with Cushings about 3 years ago. We have been treating her with a pretty low dose of Lysodren.
She will be 13 years old in July. I have a couple of questions, that I thought folks here might be able to help me with.
First
Tucker is doing pretty well has no hair loss and no pot belly, but she has extreme muscle weakness in her back legs. Extreme to the point that she often can't get up on her own. Once she is up, she gets around really well and can manage long walks. Is there something else I can be doing for her muscle weakness?

Second
Tucker has been on Rimadyl and then Deramaxx for quite awhile...since before she was diagnosed with cushings. I can't get the Deramaxx anymore, and I am considering switching to Metacam. She has been on the medication so long, I can't even remember what it was like without it. Should I let her go off for a bit? If she still needs it, do folks have a recommendation?
Thanks,
CJ

[lulusmom]

Hi CJ and welcome to you and Tucker.

I'm sorry to answer a question with questions but we'll need some information in order provide you with meaningful feedback. Can you tell us what type of cushing's was diagnosed? When you started treatment with lysodren, did you go through a loading phase. This is where a dog gets rather large doses of the drug needed to effectively erode enough of the adrenal cortex tissue to slow down the flow of cortisol. Once that has been achieved a dog is put on a weekly maintenance dose. How much is Tucker receiving now? When was the last acth stimulation test done and if you have a copy of the results, it would be great if you can post them here.

I'm asking all these questions because if Tucker's cushing's is not being adequately controlled, her weakness could be the result of continued muscle wasting due to the catabolic effects of cortisol. Cortisol is the body's natural anti-inflammatory so dogs with high cortisol are self medicating and the pains of arthritis are not usually felt. So what we need to know is what's causing the weakness. Is it muscle wasting or is it arthritis? At 13 years old, one would think that Tucker would have some joint issues; however, your answers will help us figure things out.

I'm not a fan of NSAID's so when the vet prescribed Metacam for my Jojo, I reserved it for really bad days. As it turned out, his weakness was apparently from muscle wasting because after several months on Lysodren, he slowly regained some muscle mass and his problems disappeared.

Looking forward to hearing more about Tucker. Congratulation on doing a great job of nurturing your almost 13 year old girl. That's a real testament to what a great caretaker you've been.

Glynda

[CJandTucker]

Hi Glynda,

Tucker was diagnosed with pituitary gland cushings. We did go through a loading phase. For us it lasted about five days. We split the dose between morning and evenings. We were fortunate to have a vet who had a dog with cushings, and he was very current on the disease. We have been on a maintenance dose for quite awhile. We have made numerous adjustments to the size of the dose and the frequency of the does over the past few years. Most of those adjustments were made in conversation with our vet and based on my observations of her behavior (appetite and thirst mostly). When the doses get too frequent she loses her appetite. Most of our changes over the past few years have been reductions in the dose size and frequency. We have gone from 1 pill every seven days to 1/2 a pill every 10 days. We did have to increase the frequency once when we noticed some cushings pattern hair loss.
For the first few years we had regular ACHT tests, but we haven't had one in quite awhile--maybe a year.
Unfortunately our old vet retired, and our new vet doesn't seem very knowledgable about cushings. They could certainly administer an ACHT test, but they are very expensive, and we weren't learning much from them. I am pretty sure that I have the results from her last test in my file, but I think it is too long ago to be relevant now.

I am certain that she has muscle loss in her back legs...it is very visible. What I don't know is how much of it is due to aging and how much due to cushings. She probably has arthritis too.
Hope I caught all your questions.

Thanks,
CJ

[CJandTucker]

So does anyone have any suggestions about helping with the rear muscle weakness?

[Squirt's Mom]

Hi CJ and welcome to you and Tucker! :)

It would be a really, really good idea to have another ACTH done asap to see where Tucker's cortisol is now. Taking a maintenance dose once every 10 days is not protocol for Lyso treatment. The maintenance dose is the same amount used during the load that is divided over a week. ie if a pup took 500mg a day for the load, they would take 500mg a week on maintenance divided into 2-4 doses per week. So with him only getting a dose every 10 days, he may have lost the load...tho you haven't mentioned any strong signs that would indicate this. I still think it is a good idea to find out where he stands today before trying to figure out why the muscle weakness since that is one common sign that the cortisol is too high.

I would also suggest that you have him seen by an ortho doc to make sure there are no issues with his spine, knees or hips that is unrelated to Cushing's. Large breed dogs are prone to these type problems as they age.

Duralactin is a viable med to help with arthritic conditions as are fish oils and some other supplements and herbs, which we can help you with. Several pups here have had acupuncture for the weakness and it has helped many of them. Hydro therapy is also good - if you have a pool he can swim in so you can be by him just in case. After my Squirt had one of her knees redone, we spent time swimming every day and it did her a world of good!

But before addressing the weakness, it would be best to know why it's present in the first place. If it's the cortisol running too high again, getting it back under control could help more than anything else. If his cortisol is within range, then we start looking into other causes and ways that might help. Even when the cortisol is well controlled, the muscle weakness can take a long time to improve. One thing to keep in mind - cush pups are prone to ligament tears in their legs, especially the rear legs. So even when they are feeling good and wanting to tear through the house, it isn't always wise to allow them to do so. ;)

Hope this helps a little bit!
Hugs,
Leslie and the gang

[marie adams]

Hi CJ and welcome to you and Tucker!!:)

I treated my Maddie with Lyso and we dosed 3 to 4 times a week. She was a 70 lb Aussie. She too had hind leg muscle atrophy, she didn't seem like she ever really got it back, but I know once she was loaded and on her maintenance dosing she could climb the stairs and get up better. I am sure she had arthritis which showed up after we had the cortisol under control

You are in good hands her and I see Glynda and Leslie are already helping--more experts will be along shortly. They are all a wealth of knowledge and will answer all of your questions. So keep asking them.

Take care!!:)

[CJandTucker]

I'll make an appointment to get an ACHT stimulus test done as soon as I can. In the mean time, I have taken her off of the deramaxx, and she seems to be doing pretty well.

Thank you all for the warm welcomes and the advice.
CJ

[CJandTucker]

I went to my vet last Friday to pick up some dog food for another one of my pups who has urinary track issues. While I was there I asked what they charge for the ACTH test. The woman at the front desk couldn't find it, so she asked a vet tech. The vet tech said there are two tests and it depends on which one. I thought that was odd, because I thought there was only one. The cost of the test ranges from 200-400 dollars. I figured there must be some kind of small confusion.

So today I called again to schedule the test. I talked to the vet about a few questions I had. I couldn't remember if the test was fasting or not, and I was wondering when in her Lysodren cycle we should do the test. The vet said that we shouldn't give her the Lysodren on the day she does the test. This worried me because the way she said it made it sound like she thought my dog was getting Lysodren every day. They don't have the stimulus on hand, so they will have to order it and it will take two days. The vet gave me back to the receptionist to make an appointment.

From here it got even more complicated. The receptionist said she needed to schedule my dog for a full day surgery for the tests. I said, all they need to do is take her blood, give her the stimulus and wait an hour and take more blood. Can't I just go there with her and wait? After several times running back and forth to the vet tech, she said that she would have the vet tech call me.

I got a phone call from the vet tech about an hour ago. The test there cost $375. YIKES.

I live in a very rural area, and this is the biggest vet clinic. There is one other clinic, so I called there. They do the test for $175. The had no questions about two kinds of ACTH stimulus tests. There I will have to give them a week to get the stimulus.

Partly I am just venting, and party I have a question. Are there two ACTH stimulus tests? When in the Lysodren cycle should I have the test done? Does it matter much? Does anyone have any thoughts for me about what to do about vets?

Also, Tucker seems to be doing alot worse. I don't know if it is because the deramaxx is finally all out of her system or if it is because we had a really active weekend for her or something else. She seems much more lame and more in pain. She has also been having lots of tremors and shaking. It seems to me that if she had lots of excess cortisol in her system that she wouldn't be feeling quite so bad. Does anyone else notice tremors and shaking?

[frijole]

:) Welcome to rural health care. I moved from a city to a small town and have felt the same pain. I would immediately switch to vet #2 :)

I think the other place was confusing a diagnostic cushings test (its 8 hrs long) called low dose dex suppression test with the 1-2 hr ACTH test ... you want the ACTH test.

You said you have been loaded a long time and haven't had an acth test in a while - it is a good idea to do one yearly at least to make sure that the load (cortisol level) is holding. From the sounds of things Tucker might need to have an adjustment (up or down) and the only way to know is to do the test. So have the appointment done and then you will know.

You are fine having the test done any time - normally it is done a day or two after giving lysodren because the drug keeps working for 2 days. But the day before is just fine.

Hang in there, go to vet #2 and you will be fine. Kim

[CJandTucker]

I have an appointment with the new vet on Saturday at 11:15, but this isn't for the ACTH test. The vet wants to meet the patient first. I think this is a reasonable request, but I am bothered by the delay of the ACTH test. It will take them a week to get the stimulus to do the test, and I assume they won't order it until after my appointment.

I had another conversation with the vet tech today at my current vet that sealed the deal for me. Not only are they charging almost twice as much as the new vet, they have absolutely no clue about cushings. A couple days ago, the vet Tech had offered to check into the price discrepancy for me between the two clinics. He talked to the Vet, and she had him do some "research" to find out about the tests they offer. It took him two days to get back to me because of this research. Basically, he told me all about the ACTH test and the LDDS Test and what they were for. All things I already knew, but apparently they didn't.

Not only that. They were recommending that I will most likely need to follow up the ACTH test with the LDDST to distinguish the diagnosis.

So (a) The vet had no idea what these tests were for, and had to have the vet tech look it up for her. And (b) they hadn't even bothered to read my dog's records to see that she was already diagnosed with pituitary gland cushings, and has been on Lysodren for three years. Something they should have known from our phone conversations. (this is probably the vet tech's fault, not the Vet.)

But it was all there in the record. When my vet retired and I strarted to see this vet I meticulously wrote out every step that we had been through with the loading and dose changes, and I brought them all of Tucker's test results. So they have my ACHT tests and my LDDS test.

Just had to rant.

[frijole]

First off - I love the photo of Tucker - so cuddly and cute!

Oh god I had deja vu reading your post.... it just drives me crazy that people don't read the files after you have spent thousands of dollars on diagnosis and treatment. Ridiculous.

I worry that if your new vet doesn't have the cortrosyn in house they might not treat alot of cush dogs. I am going to copy/paste some info from Glynda that might be helpful. It can save you a lot of money and I suggest you print this out for your vet.


Acth stimulation tests...ARGH!!! They are the bane of my existence and I was so happy to learn that there is a way to save money but only if you have a smaller dog. Rascal is small enough to save you money too. Way to go, Rascal!!! Most vets use a stimulating agent called Cortrosyn but we call it liquid gold because it's that little vial that dictates the cost. The vial is .25mg and instructions say to use entire vial but not all dogs need the entire vial. There have been studies done that show using just 5mcg per kg is all that's needed. Since there are 250mcg in one vial, your vet can get two stim tests out of one vial. This has saved members a lot of money, especially those of us with teeny dogs who can get five and six stims out of one vial. Formula for Rascal's weight in pounds converted to kg is 39 divided by 2.2 = 17.73 x 5mcg = 89mcg. Your vet can round that off to half a vial or 125 mcg.

Some vets are not aware of this so we always provide the url to Dr. Mark Peterson's blog which instructs vets on how to dilute and store cortrosyn for future use.



http://endocrinevet.blogspot.com/2012/03/how-to-dilute-and-store-cortrosyn-for.html
You have nothing to lose and everything to gain by printing this out or providing the URL to your vet and asking if s/he will please split the vial.

[Jenny & Judi in MN]

I hope this new vet works out and that Tucker gets some of his leg strength back.

I know on the diabetes forum high blood sugar is causing rear muscle weakness in some of those dogs too.

Tucker is incredibly cute. good luck!

[CJandTucker]

Thanks Frijole,
The idea of splitting a dose is great! Unfortunately Tucker is a big girl. She is quite thin for her size, (we keep her weight down because of her heart murmor), but she is still 65 lbs. It looks to me like the cutoff for splitting a dose would be 55lbs.

Neither of the vets here have the cortisol in house. Both have to order it. My vet sure doesn't seem to know anything about cushings. Maybe the new one will....maybe not. Sure glad I have this forum to check in with.

Thanks Jenny and frijole for the kind remarks about Tucker's photo. She is a sweetie.

[CJandTucker]

First to recap...I am trying out another vet in town (there are only two) since my vet (who I will refer to as Dr B) doesn't seem to know much about cushings and doesn't seem to know the difference between the LDDST and ACTH. Also, the other vet quoted a price of 175 vs my vet 350.

I will call the new vet Dr K. Dr K won't do the ACTH test until one of the vets in her office sees my dog. Seems reasonable, so I made an appointment for Saturday (today) so that both me and my partner could go. We sat in the office for 45 minutes before we got to see the vet tech and then we waited another hour before we saw the weekend vet, Dr Z. Dr Z spent 2 minutes with us. He seemed to think that Dr K had us scheduled for an LDDS test. He couldn't answer any of our questions, and clearly didn't even know what the LDDS test was for. He apologized profusely and said we would need to see Dr K. We were there for almost 2 hours to spend 2 minutes with a doctor who didn't know anything. He did not charge us anything.

At this point I don't even know what to do. I suppose there is a possibility that Dr. K knows what she is doing. However, the vet tech at her office mentioned that they were using the LDDS test to monitor another dog with Cushings. Everything that I have read says that the ACTH test is the test to use to monitor cortisol levels when treating a dog with Lysodren. Am I wrong? Is it possible to use the LDDS test instead? Both vets in town seem to be pushing the LDDS test instead of the ACTH test. Is there something I am missing?

[frijole]

Nope. You are right - only the acth test is done to monitor cushings/cortisol after diagnosis. It is apparent that the people you have spoken with are clueless. :p But for the most part they are the front desk folks right?

Here is what I would do - since you already did your obligatory office visit for the new vet, I would call them and schedule an acth test. If they try to go down the LDDS path politely stop them and tell them you have lot of friends (that would be us!) who have treated dogs for years with cushings and you need an acth test. I would schedule it so that you could actually be there and meet with this new vet so you can talk to him in person and gauge whether or not he has his cushings' act together or not. Be honest and tell him you're frustrated with the lack of experience you have encountered in your small town and you need help. YOu've done enough research to know what you need is either a vet that knows what they are doing OR is willing to open up a textbook (computer) and take the time to LEARN!!! You are a total revenue stream - guaranteed income for them so it makes no sense :D

Anyway... if you are still afraid... you have decisions to make.. do you live near a town that is an alternative? I live in small town Nebraska so I understand. I drove 1 1/2 hrs once for an acth test and 5 hrs to go to a specialist. It was worth it.

I so feel for you. You are doing everything right. Hugs, Kim

[CJandTucker]

I think it is the vets are clueless too.
Dr B had to get her vet tech to look up the tests and call me back.
Dr Z admits he has no clue.
Dr K, according to her vet tech, is monitoring a cushings patient with the LDDS test.
I can call Dr K's office on Monday to confirm. If they really are offering the ACTH test for 175, I may as well go there. I know how to read the test, and can make my own adjustments.
If not I can check into other places. It's just that Tucker is 13, and she is sore. I hate putting her in the car at all much less riding her around for long periods of time. Ottawa, Canada is an hour and a half away. I know there are good vets there. I'd have to check into border crossing rules.

[CJandTucker]

Still no ACTH test yet for Tucker, but I do have some good news.

We had taken her off of Deramaxx about 10 days ago. At first she seemed to be doing pretty well, but after about 4 days she started to feel worse and worse. In the morning she wouldn't even get up to eat. We had to bring her her food. So on Saturday we started her on Metacam, and she is feeling so much better. Better than when she was on the Deramaxx. She is up and about and even playful at times.