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Dermatomyositis Question


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#1 Patty

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Posted 27 November 2006 - 04:29 AM

I have limited sclero and dermatomyositis. Right now I am also suffering from L hip Bursitis. My leg muscles are so sore right now, I could cry with each step I take. When I have to walk up or down the stairs forget it. The pain is something awful. I also have to rest more often now when doing even the smallest tasks around here. My question isthis: Is the dermatomyositis causing the pain? I know it causes weakenss but I am not sure of the pain. If so any ideas what kind of med I can ask my dr for. I h ave the kind of Dr that won't give mends for my sxs unless I ask for them it seems. I am taking pain medications at the momment but they are n ot helping the miscle pain and weakness.
I would really love any help about this as you all know I have a 2 year old and I feel so bad that I can't run and play with herlike I want to or should. Right now her fav game is Tag so you can see I need to get this under control for her sake if not for mine.
Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#2 Shelley Ensz

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Posted 27 November 2006 - 09:23 AM

Hi Patty,

I'm sorry to hear you are suffering more. Please see your doctor right away. This could be due to dermatomyositis, or something else, or even a side effect of the medications you are on.

Since your pain is worse and different than before, and the medications are not helping, it is very appropriate to see your doctor. There's no way we could recommend a specific pain reliever, since your doctor needs to consider your entire health history and review possible medication interactions, too. And besides, none of us are doctors, either. But we're with you all the way, so let us know how things turn out at the doctor...and hopefully you'll be playing tag with your daughter again soon.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 janey

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Posted 27 November 2006 - 09:51 AM

Patty
I agree with Shelley - go see your doctor. Just giving you pain killers is not solving the problem. I have polymyositis (DM without the rash) and sclero. Before diagnosis I had the same problems that you have in having a very difficult time going up stairs and only did it when there was no other option. The pain in my hips was horrible and that pain usually traveled down the whole leg because I was trying to use a muscle that no longer had the strength to do work. It was even painful lifting my arms up to wash my hair. At times, I would just have my husband wash my hair. Instead of pain killers, my rheumatologist put me on methotrexate and 5mg/day prednisone. After a couple of months, the pain stopped and the continuing weakness stopped. It's been 3 years and I am certainly not back to where I was originally, but I have no pain and the strength is coming back - slowly but surely. I did have to go on IVIg infusions after 1.5 years when the MTX plateued. IVIg has been a miracle treatment for me. It's expensive (for the insurance company) and inconvenient for me - but well worth it.

I do have a concern about your going to a doctor that will only prescribe something if YOU ask for it. It this guy familiar with sclero and DM? If not, please find another rheumatologist. If you need help, we do a a source here at ISN that we can give you.
Let us know how you are doing.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#4 scleroguy

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Posted 27 November 2006 - 12:02 PM

Hi Patty,

I agree with Shelley and Janey- go see your doctor. I too have dermatomyositis and scleroderma. The muscle pain and fatigue are some of the most common symptoms that I experience. I have them after very little effort or exertion, and whenever my CPK level is high. I have experienced the muscle weakness you described as well.

My doctor tried different medicines, but it was the combination of prednisone and methotrexate that helped with my symptoms and brought my CPK level down. I was later changed to ARAVA because I did not tolerate the methotrexate well. ARAVA and methotrexate are both immunosuppressants.

Warm wishes,
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#5 Patty

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Posted 27 November 2006 - 12:54 PM

HI Janey and Shelley,
I have an appointment on Thursday with my rhummy IF My sitter is over her strep) but Its my primary care physician that won't give me meds unless I ask for them. My rhummy won't give meds at all. shes has primary care physician do all the meds for some reason. I can't changed doctors right now because I go to a clinic because its the ony place around that takes my insurance. I will talk to the rhummy Thursday when I see her. I was on pred. for a whle but had to go off for a liver biopsy and I do not want to go back on it because of the weight gain and my heart starting to get stiff, I do not think the extra weight is good for it. I am going to try my primary care physician again tomorrow and hope that I can get in and let him see how weak I am right now.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#6 Patty

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Posted 28 November 2006 - 06:09 AM

Hi scleroguy,

I was wondering of you found the dermatomyositis to be more bothersome then the sclero? I also find now that I dont know when one stops and the other starts. My Rhummy said I have limited but my upper arms are also tight and that really is not what I have read limited is. Oh well,I guess it really doesn't matter what is causing the sxs, but how its treated.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#7 Grandma Judy

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Posted 28 November 2006 - 09:48 AM

I was diagnosed in March with dermatomyositis because of the skin rash. It took 2years for them to decide what it was. At first they thought it was lupus. I have been on prednisone since then from 40 mg to 20 mg now, but can't seem to get any lower. Till have the nail bed problem and some rash on the face even with 20 mg of prednisone. Tried plaquinil but didn't see a difference. Today the dermatologist wants me to go on methotrexate plus stay on prednisone for a couple of months. Is there anybody out there that can give me hope? I have went the holistic route and spent hundreds of dollars to no avail. Been tested for metals, bacteria, food allergies, had a liver biopsy, been picked and prodded and still have not got the disease under control. I have been healthy all of my life and now at 56 have been told that I have this disease. I do not have the muscle problems yet. I am doing weight-bearing exercises to try and keep myself healthy. I have heard a couple people say they did the gulten-free diet. I tried that for 2 months but was tired of being limited to so much. I would appreciate any advice anybody could give me. I want to be around for my grandchildren. My dermatologist admitted that she does not know that much about the disease since it is not that common.

#8 Heidi

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Posted 28 November 2006 - 12:28 PM

Hi Judy,

Welcome to the Forums! I am glad to see you have joined us but sorry it is because of your dermatomyositis. I don't know how much reading you have done on it, but here is a link from our Sclero A to Z web page that may provide you with some good information: http://www.sclero.or...tis/a-to-z.html

Here is some information about treatments for it as well: http://www.sclero.or...html#treatments

I hope you find this information helpful. And, again, welcome!

Warm wishes,
Heidi

#9 scleroguy

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Posted 28 November 2006 - 12:33 PM

Hi Patty,

I agree that I don’t know when one stops and the other starts. I think that the dermatomyositis is more bothersome then the sclero in terms of my pain and limitations on a daily baisis. The muscle pain gets my attention because it lasts for days at a time. I also think it is responsible for my shortness of breath. However, I find it hard to think about the muscle pain when the Raynaud's starts. The Gastrointestinal Involvement is an ongoing challenge, and the Heart involvement was what put me in the hospital the last time.

All in all, I can't say that I would recommend either scleroderma or dermatomyositis to my friends :) .

Grandma Judy,

The combination of prednisone and methotrexate helped with my symptoms and I believe that they also slowed the progression of my disease. This was back in 2003. At that time I was not sure that I would make it to see my daughter graduate. My daughter graduated this year and is now in college.

You mentioned your dermatologist, but you did not say if you are also seeing a Rheumatologist. My Rheumatologist is the main doctor that is treating me. I would recommend seeing a Rheumatologist if you are not currently.
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#10 Grandma Judy

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Posted 28 November 2006 - 12:56 PM

Thank you for responding. I have never used a forum before and my daughter directed me to this site. I need to make a decision on whether to go on methotrexate, check out something called Intravenous Immunoglobulin or just deal with the red rash, nail soreness, and flare-ups. At this time I only have the skin rash and not the muscle disease. I think it is drastic measures to use such high-risk drugs for just the skin disease. My holistic doctor is disagreeing with my dermatologist and I think that is putting more stress on my systems.

#11 janey

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Posted 28 November 2006 - 01:21 PM

Judy,
Welcome to the forum! Sorry to hear that you have DM. I have the non-rash form of DM. I have polymyositis, so I have lots of muscle involvement. I agree with scleroguy that you really need to be seeing a rheumatologist. DM is an autoimmune disease and that's what rheumatologists specialize in.

Like scleroguy, methotrexate and low does prednisone (started August 2003) really brought my diseases (sclero as well) under control for a while then I plateaued. I've been off prednisone for several months now and off the methotrexate for a couple of weeks. About 1.5 years ago I started the IVIg (immunoglobulin) infusions and I do consider that my miracle treatment. It's not a drug but rather an infusion of antiboides extracted from plasma donors. The treatment itself is boring but well worth the feeling afterwards. It is a very expensive treatment and in the link that Heidi provided, it is used to treat DM. Intravenous immunoglobulin in autoimmune neuromuscular diseases.

Please go and see a rheumatologist. It might help to settle the conflict between your other two doctors. Let us know how you are doing and I'm so glad you found us.

Big Hugs,
Janey Willis
ISN Support Specialist
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International Scleroderma Network (ISN)

#12 Patty

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Posted 28 November 2006 - 02:11 PM

Hi Judy,

I understand the rash. I had it on my face, neck and back. I was put on prednisone ( 10 mg) and it cleared it all up! I am now off it because I had to have a liver biopsy and now I do not want to go back on but the rash is coming back and so is the itching on my back. I also had leather like skin on my chest area. I also have the sore finger nails that you said you have. I did notice that my muscle pain did not start untill I went off the pred but I have heart stiffness so I do not think its such a good idea to go back on and gain weight to put my heart more at risk. I am not on any of the meds that you said you are looking into so I can't say how they are for me. I am going to my rhummy this week and because I got somewhat good news on my liver I hope that I can start one of them to keep things where they are now if not help then get better. All I know for sure right now about the sclero and DM is that we each own our disease and its different for each of us. What works for one won't mean it will work for the next person and also, we all may have sclero but we all do not have the same sxs as the next person. I think thats what causes such a chalange for the doctors.

Welcome to the board and like Janey said, sorry its because you have DM. I hope that you find the board as useful as I have.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#13 Grandma Judy

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Posted 29 November 2006 - 01:51 AM

Hi, Ron

Thanks for responding. Yes, I have been to a rheumatologuist. He took alot of tests and found no muscle damage. He just told me to do weight-bearing exercises, which I do every night along with walking on a treadmill. I think I am in the early stages of this disease. It is so frustrating not knowing what choices to make. It comes down to what is worse - the disease or the medication to damage your body.

Grandma Judy