Dermatomyositis - what is a normal timeframe for treatment?

Hi,

I have had Derm for over 10 years.  I do not have muscle involvement, which probably means that I won't since it has been quite some time.  You may also be fortunate not to have the muscle involvement.

I am working with my 3rd Rheumy.  The first was not proactive, but did try me on Plaquenil, which did not work.  I went to NYC for a definitive diagnosis at NYU Langone. He did not offer any other treatment plan.  My 2nd MD tried me on a low dose of Methotrexate, which did not work. (She never discussed the sun's effect or how diet may be increasing symptoms so I switched) I have to admit, that I am hesitant to try high doses as I am a nurse and work with sick people, so an immunosuppressant is not ideal.

My current doctor has actually worked with patients with this diagnosis, and she gave me the best workup so far.  Here are some tips:

1. Research on-line.  The Myositis foundation has good information and holds a yearly conference which you can watch.  Patients ask the doctor panel questions.

2. Find a myositis center and go for a workup.  Check with your insurance company first!!!!  I was scheduled to go to Johns Hopkins in Maryland, but found out that they wanted to repeat all the tests (chest xray, muscle EMG, blood work and MRI's for malignancy).  I would have had to pay tens of thousands out of pocket!

3. Have the tests done by a doctor in your network. Chest xray to rule out lung cancer, muscle EMG lets you know if your muscles are showing the illness, blood work gives you your levels and the MRI's are to rule out other cancers which may occur within the first five years of diagnosis.

4. Stay out of the sun!  Use sunscreen daily as the sun makes the derm worse.  I buy SPF clothing and hats and have found fashionable items at Coolibar.

5. Review your diet as the root of dermatomyositis is inflammation.  I try to eat "whole foods" with minimal processing.  Reduce sugar, caffeine, alcohol.

6. Keep moving!  I exercise regularly.  Although I have no muscle involvement, I have found that I fatigue with repetitive movement.  Meaning, anything with my arms overhead.  I also can't run easily, but can walk for miles.

The bad news is that there is no cure.  My skin has red, dry, extremely itchy and painful areas.  I have tried all sorts of moisturizers and have found that although petroleum products are not great for us, they manage my most painful areas on my body.  I use a combination of moisturizer serums and creams (not lotions) on my face. I have finally found a foundation that covers my facial, neck and chest redness that doesn't adversely affect my skin.

My hands are the classic derm hands.  I have the banding across my knuckles, my fingers swell (although they don't appear swollen, they are tight, painful and tingly most of the time.  I find the cold weather worsens them and I don't have Raynauds's syndrome.  The cuticles get very thick, so I carefully trim them, moisturize them and use an orange stick on them in the shower.

My other joints are fine.  One of the worst issues is the scalp itching!  I have tried topical steroids, I avoid sulfate shampoos and don't wash my hair every day.  I got one of those weird head massagers and it does temporarily quell it. It drives me crazy and wakes me up nightly!  I have read other forums and this is a common complaint.

My hair is also thinning, but I am in my 50's so that may be the reason.

It is extremely frustrating, and I feel the affects hourly, daily.  I do feel lucky that I don't have the muscle involvement. 

There really isn't much relief for our symptoms, but maybe with these forums we can help each other.  I have met one other person with it and she has luck with oral Cellucept.  That will by my last ditch effort after the trial of Plaquenil and Quinacrine I am currently trying with no signs of improvement.

I hope some of this information helps.   I would also appreciate hearing if you have any successes.

Hang in there and stay strong!