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Stephanie

Dermatomyositis Sufferer Needs Help

4 posts in this topic

My mother has been diagnosed with dermatomyositis and has been on prednisone (up to 60 mgs) and had shots of depomedrol (?) since March. Nothing seems to control it and she has had constant flare-ups (which are extremely painful). She has gone to dermatologists, rhuematologists and a DO and everyone is confused as to what to do next. Since the prednisone is not working, we don't know where to go from here and the doctors are clueless as well. I am searching for any advice from anyone who has had experience with this.

 

Thank you....

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Hi Stephanie,

 

Welcome to the Forums! I am glad you found us, but sorry it is because of your mother's diagnosis of dermatomyositis. I don't know if you have had a chance to read any information on dermatomyositis on our ISN website, but if not, here are a two links to help you: This first one will take you to the section on dermatomyositis

http://www.sclero.org/scleroderma/symptoms/ass...tis/a-to-z.html

 

This next one talks specifically about treatment:

 

http://www.sclero.org/scleroderma/symptoms/ass...html#treatments

 

I hope you find this information helpful.

 

Warm wishes,

Hedi

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Hey Darling,

I have polymyositis which is DM without the skin problems. I suffered from tremendous muscle weakness and weight loss. I had problem swallowing as well, but that could have been from the sclero since I also have that. I was not put on high dose prednisone due to the sclero, but rather put on Methotrexate. It worked quite well for about 1.5 years then I plateaued. For the past 1.5 years I have been getting IVIg infusions which have worked GREAT! As with all meds, these infusions work for some, but not for others. In the information that Heidi linked you to, you'll see a study on Intravenous immunoglobulin in autoimmune neuromuscular diseases. You might take at look at this and the other treatments and discuss these options with your mother's rheumatologist.

Please let us know how your mother is doing and do not hesitate to seek more information or support from this forum. Your mother is a lucky woman to have you by her side.

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Stephanie,

 

I too have dermatomyositis/polymyositis (I have been told both at different times). I had the muscle weakness and weight loss as well. My biggest problems were from the muscle pain and fatigue.

 

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.


Ron

 

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

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