Re: Question for Beth

[Guest guest]

Hi Gale,

You're correct my DM was diagnosed 2 and a half years after my NSIP. They are kind of intertwined but I'll try to give you the "Readers Digest" version of this. Feel free to email me directly if you want more details.

I developed symptoms of DM (though I didn't know what it was) parallel to the development of the lung disease. I was becoming increasingly short of breath and at the same time I had a horrendous "rash" on my hands. My hands became blistered, calloused, peeling, scaly and most of all itchy. I went a couple of times to a dermatologist who treated me for psoriasis, allergic dermatitis etc. Nothing stopped the intense itching. It's hard to describe how bad it was. Even cortisone creams didn't touch it. But I did my best and coped, never linking it to my increasing respiratory symptoms. During my long big house stay in June of 06 (when I was diagnosed with pf) I was on high doses of iv steroids. By the time I went home from the hospital my hands had cleared pretty much completely. No one ever commented or questioned my hands during that hospitalization though I will admit they

were more consumed with keeping me alive than with a rash on my hands. Once I was out of the hospital and I consulted Dr. Simonelli at Columbia. He tested me for connective tissue diseases but the fact that I was on high doses of steroids at the time rendered those tests virtually meaningless. The prednisone suppresses most of those diseases making them much more difficult to diagnose.

I remained on predinisone through late winter of 2007. Once I had been off the steroids for about 6 months the "rash" began to creep back. Less severe than before but it was definitely back. I still did not link it to my lungs nor did anyone else I was seeing at the time.

In December of O7 I moved to North Carolina and had my first appointment with Dr. on at Duke. At that first appointment he picked up one of my hands out of my lap and said, "this is "mechanics hand". I had no idea what he was talking about but he went on to explain that the specific kind of rash I had had a name and was associated with a connnective tissue disease called dermatomyositis. He ordered bloodwork, it came back 'inconclusive'. We waited a few months, did more bloodowork, still inconclusive.

In the meantime, by mid 2008 I began to develop proximal muscle weakness which is weakness in my muscles closest to my trunk. My thigh muscles and upper arm muscles. I also began breaking out in occasional patchy itchy rashes on my face, mostly around my eyes.

Dr. on referred me to a rheumatologist ( Criscione Schreiber) at Duke who did more bloodwork and scheduled a muscle biopsy. That's what finally gave me the definitive diagnosis of DM. I started on Imuran which has caused most of the DM symptoms to recede though I still struggle a bit with the muscle weakness. I've been on Imuran now for well over a year except for a month or so around the time I had H1N1 back last May. I've had no real problems with the Imuran and my liver seems to tolerate it well.

This is far from a condensed version....sorry about that. I've never been good at editing. lol If I left something out that you want to know, please email me directly. I'll be happy to answer your questions.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, January 24, 2010 4:58:23 PMSubject: Question for Beth

Beth,

I noticed your diagnosis of dermatomyositis was two years aftwe the NSIP diagnosis. What symptoms led them to this diagnosis and what type of MD made the diagnosis.

Gale

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