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Biomarker for Diffuse Scleroderma skin has been discovered!


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Muscle Strength and Exercise


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#1 BuddM

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Posted 25 April 2009 - 04:03 PM

Hello,

My 43 year old wife is suffering with Dermatomyositis. She is really bothered by the red itchy skin over most of her body and her strength is down. She can't get out of a bathtub without major effort. Walking up stairs and getting out of chairs are also a struggle. My question is has anyone ever gone to Physical Therapy? I understand how to build muscle in a healthy person, but I want to make sure what we do is the correct thing to help build her leg strength. Has anyone had positive (or Negative) experiences with exercise and/or weight training? Also any thing that helps clear the red itchy skin? We are not sure that she does't have some other underlying issues. That is always in the back of our minds.

Things we have tried so far, some still on, some we stopped.

All of the following they had her on all at once.

Prednisone. Doesn't help. She had a bad reaction to it. In the hospital she had two doses through IV of 1000mg's each, two separate times (Total of 4000 mg's).
Was on Prednisone 2-20mg tablets twice a day. Stopped all Prednisone.

Prescription pain relief tablets once a week

Vitamin D 50,000 mg 1 tablet twice a week.

Calicum Carbonate 750 mg once a day.

Omeprazole 20mg twice a day.

Plaquenil 200mg

IVIG. Did 5 months of it so far. Has one more month to go.

Is on Methotrexate 20mg tablet twice a day.

Right now we stopped all of the above except for a change in the Methotrexate (Along with a change in our doctor)

She is now on:

Like I said she has one more scheduled IVIG treatment. Two consecutive days of 75 grams a day.

Methotrexate 1cc taken through injection form.

Plaquenil 200 mg tablet once a day.

Does this sound like she was on too much medicine?

Any concerns all the medications kept her weak?

Like I said: new doctor and a new start. I really need to get my wife back, so any help or suggestion would be greatly appreciated. I'm used to fixing things and this one I'm over my head with. This all started one year ago. We have come a long way from the level she was at, but is seems like we hit a plateau.

Thanks
Bud

#2 Jeannie McClelland

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Posted 25 April 2009 - 05:12 PM

Hi Bud,

Welcome to the Forum. I'm awfully sorry you and your wife are going through this. She's lucky to have you on her side. I hope we can offer you both support, information, and friendship.

You have to bear in mind none of us can offer more than advice based on our own personal experiences and you and your wife really need to consult her doctor before making any medication changes or starting an exercise program.

I don't have any experience with Dermatomyositis (I have systemic sclerosis), but I have had the opportunity to have physical therapy for a number of issues. I've had very good results, but I'd think it would be best to see a physical therapist with knowledge of dermatomyositis, if possible. Maybe her doctor could recommend someone?

Have you looked at the page we have on Dermatomyositis? In the section on treatments both medication and exercise-based treatment is mentioned.

Of course I'm not a doctor or a pharmacologist, but the medications you listed don't seem at all unusual or excessive. I would doubt any of them contributed significantly to the weakness.

Will your wife's new doctor be testing her for the other underlying issues that you suspect?

I know that there are Forum members who have polymyositis or dermatomyositis and hope they'll chime in with their experiences and what they've found to be helpful. I'm sorry I couldn't offer much myself.

Don't give up hope! Most of us plateau off and on again. It's a little like a diet - you just have to keep at it to get results. :)

Again, welcome to the Forum. Best wishes to your wife and self,
Jeannie McClelland
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#3 janey

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Posted 27 April 2009 - 04:29 AM

Bud,
Welcome to the forum! I'm so glad that you decided to join us because even though we aren't specifically a myositis forum, we have lots of members that have both DM or PM and scleroderma. I am one of them. I have both scleroderma and polymyositis (same thing as Dermatomyositis DM but without the skin issues).

As Jeannie said, we aren't doctors so all I can do is relate my own experiences and how I worked with my rheumatologist. I have some questions and would recommend you do some research on couple of issues. One being the methotrexate. I've never heard of methotrexate given daily. I took it once a week which is the standard dosing. Please see the patient information on MTX from the American College of Rheumatology.

When I was first diagnosed (Aug 2003) I was put on 10 mg/day of prednisone and 15 mg/week of MTX (also prescribed folic acid which is usually prescribed with MTX). The MTX was eventually increased (over a 4 month period) to a 25 mg injection once a week. This treatment brought my CPK down from 3000 to 1000. The CPK is a measurement of the muscle enzymes in the bloodstream, therefore, the higher the number the greater the muscle inflammation. I plateaued on the MTX so in March 2004 I started the IVIg treatments: 4 months of 1 treatment/per month (4 day treatments), then 1 treatment every 6 weeks. By Dec 04, the CPK was down to almost 200 and I was really feeling the difference. I was able to get up out of a chair by myself. I didn't have to assist my head when raising from a pillow and my arms didn't give out halfway through washing my hair. All things I'm sure your darling wife is dealing with.

Because of scleroderma I also have several systemic issues, so when I developed lung problems, I was taken off MTX in Sept 06. Up to that point I was giving myself a 25mg injection once per week. I was totally off prednisone after a couple of years. It helped mostly with fatigue. I still do the IVIg treatments, but we have been able to stretch them out to a 3 days treatment (48mg/day) every 10 weeks. My CPK is comfortably below 200 (normal) and I'm exercising again. Your wife shouldn't be exercising until her CPK is back to normal (according to what I was told by my rheumatologist. Exercise can make it worse). She should be stretching and just moving all her muscles, but nothing that would cause them to fatigue.

As my immunosuppressant I am now on cellcept. With the IVIg every 10 wks, the cellcept, 500mg/day Vitamin D and E and a couple others related to my heart and lung problems, I'm doing very well.

Personally I think you should ask your doctor why your wife is on MTX, plaquenil and IVIg. I'm not sure the purpose of the plaquenil unless it's for the skin issues. With all that medication and other supplements she's taking, it seems to me that it would be hard to know what's helping and what's not. My rheumatologist is great in only prescribing one thing at a time or reducing one thing at a time. That way we know what works and what doesn't.

I hope some of this has helped. You wife is very lucky to have you working with her on this. Having a similar situation, I know I couldn't have made it through without the support of my husband.

So a very big hug to you both,
Janey Willis
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#4 epasen

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Posted 27 April 2009 - 09:15 AM

Hi Bud,

I did physical therapy for many years, weekly. The good thing was there was always someone to see what kind of progression had happened in a short period. My symptoms weren't that bad then but I'm sure that physiotherapist is the right person to work with muscle weakness and light exercise.

Take care,
Emmi