I have Dermatomyositis. It is in the skin so far. Fearful meds not working because the rash goes and then I get a new pink patch. Going for blood work Thursday again to check cpk. Also can someone recommend a good sunscreen
With Dermatomyositis does the rash come and go even.if the inflammation is under control?
Added 28 May 2013:
Trying to educate myself. Still shellshocked and fearful. On Prednisone Methotrexate Folic acid.
Hi Merriloo. You are on the right track. To get full information, become a member of the Myositis Association. Myositis.org. They have the various forms divided into types. IBM, Poly, Dermato. They alsowillsend a monthky newsletter, have conferences and so forth. There is information on the Muscular Dystrophy site as well.
It will take a while for the medications to work fully, and there may be frequent adjustments until your ck is normal or close to it, and the inflammation becomes controlled. Nothing to fear here. No one dies from it and you might want to approach it like eczema, crummy, treatable at times, but life goes on. Once your body heals more you will find normal activities.
Be sure they do a lung X-ray so you have a baseline. They are finding that ILD (interstitial lung disease) is more common than they thought. Also the Jo-1 antibody being present or not is important. My ck two weeks ago was at 300. Highest has been 7200. Still here, right? More information will help you work with this disease and know what to expect and what you need to watch out. I probably gave you all this already, but it may help another.
Stay in touch. You will be fine and will be able to adjust. Often methotrexate is very effective with Dermatomyositis and I hope it does well with you.
*Use the highest SPF you can. I am not allowed to go in the sun because ten minutes unprotected gives me a bright red sunburn and damages the skin. Use it year round as you will be very sensitive. Be sure you take
Vitamin D and calcium supplements. Blood tests will confirm what is needed.
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