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Hereditary angioedema and dermatomyositis... and an update

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Posted 7/25/2008 12:48 AM (GMT 0)
Hey everyone,

Today I went to the immunologist that my rheumy referred me to b/c I came back deficient in C1 inhibitor. The immunologist is now working me up for hereditary angioedema and dermatomyositis. The workup just consists of more bloodwork... 26 different lab tests to be exact, some of which take 6 weeks to get results. She also suggested a skin biopsy. She said it may or may not be related to the lupus, and I was just wondering if any of you have been diagnosed with either of these conditions.

Just to update, I had a really bad flare the day after my sisters July 4th wedding. I broke out in the awful rash on my face, joint pain/swelling, and my eyes swelled shut. Fun times! I think it was just the running around all day and caused me to flare... I hated that I wasn't my real self for her wedding, but I tried my best. Anyway, went to rheumy a few days later, she took more labs, she prescribed Ultram for the pain, increased the prednisone to 20mg a day for a week, then did 10mg for a week, now down to 5mg a week. I'm already feeling a difference being on the 5mg, my face is itchy and more red and my joints seem much more swollen then when I was on the higher dose. Was also treated for a UTI and started Lipitor for high cholesterol. It's frustrating.... I really just want to know what is wrong! I know all of you have all been in this diagnostic limbo, sometimes I just dont know how to deal! Thanks for letting me vent

MJ
Posted 7/25/2008 1:38 AM (GMT 0)
Hi MJ.. I was diagnose with dermatomyositis several months ago had a biopsy on my face last week. She put me on quinacrine. I'm on zetia for cholesterol and fish oil pills. I know what you mean about blood work I get blood work done a lest every month but that is because of other issues that I have. Dermatomyositis is overlapping with the lupus. Do you have any muscle weekness that is also a sign of derm. Debbie
Posted 7/25/2008 12:00 PM (GMT 0)

Hi Debbie,

Sorry you are going through all of this, too. I'm not really sure about the muscle weakness. I mean, I'm a scrawny little thing to begin with, and I always attributed my lack of strenght to not getting my butt to the gym! I'm able to get through my 8 hour shifts, but I've noticed it's definitely harder to lift my patients (and I work with kids!) and I am absolutely drained when I get home. So yes, lol, I guess I am experiencing it. What exactly did the skin biopsy show/diagnose if you've already been diagnosed with the dermatomyositis for months now?

Posted 7/25/2008 12:41 PM (GMT 0)
Somehow she diognose me by looking at my skin and the weakness that I have. I didn't get the results from the biopsy yet. She did said they will call if it comes back differant then what they suspect. Their also checking for le I was diagnose with discord lupus 20 yrs ago alot of differant problems have been accuring in the last 2 yrs. She also suspects mctd so I will see not fun. LOL.
Take Care Debbie
Posted 7/25/2008 2:18 PM (GMT 0)
(((((((((( MJ )))))))))))))) ((((((((((((( Debbie ))))))))))) I'm so sorry you two are going through more dxing. But, I'm really glad you have each other to talk to. This forum sure is a life saver. I hope you'll both post more when you get your bx and labs back. This is all very interesting (from a distance!). Blessings!
Posted 7/25/2008 3:55 PM (GMT 0)
MJ, I'm sorry you had such a bad flare and that things are getting worse again with the prednisone taper. I have not been able to get below 7.5mg yet without feeling rotten. Please keep us updated on what you find out about all of your labs.
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