What other tests can be done?

• By micheleb
• Posted August 27, 2008 at 4:47 pm

I can't believe she asked you is you expected to be treated for free!!!!!! HOW RUDE!!!!

I understand the frustration in not getting any answers, it took me 4 years to arrive at the correct answer. Remember not everyone with sarc will have an elevated ACE level, especially if its a chronic case. My ACE runs relatively normal.

If the steroids are helping you to physically feel better, than it sounds like you have some sort of inflammation somewhere. A CRP, c-reactive protein blood test is a little more accurate at measuring inflammation but not sure how that would really change your treatment any and not sure how expensive the test is.

Have you already been dx with sarc?

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• By notes4me
• Posted August 27, 2008 at 4:58 pm

Yes. I was diagnosed in 2002. BUT, I was told, or rather my parents, that I had scleroderma at the age of 9 and I may not make it to be an adult. Well, years of being sick,but still here. In 2002 I had lung biopsy that confirmed sarcoid. I was sent to a dermatologist and he did two more skin biopsies and took me to grand rounds in Houston. This is what I got...the scarring I have that continues to spread is "a crazy manifestation of the sarcoidosis" and this is chronic for me. I agree, my doctor was very rude, but I was so sick and only had so much money to spend. Most of the rheums I called cost far more than she does. But maybe there is a reason. Thank you so much for talking with me. I feel so alone all the time.

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• By micheleb
• Posted August 28, 2008 at 4:54 pm

This scarring you are talking about, is it your skin as you mentioned scleroderma? Have you tried any other treatments other than the steroids? Placquneil is pretty inexpensive as is mtx, has your doctor mentioned trying either one of those medications yet?

I'm sorry you are going through this but we are here to help. You don't have to go it alone. Its tough when the people around us don't get how we feel everyday but we fellow sarcies get it! Big hugs to you!

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• By notes4me
• Posted August 28, 2008 at 11:28 pm

Hi micheleb. Yes the scarring is in the skin and has gone deep into the muscles in some places. About 8 years ago this same doctor I mentioned had me on placqueneil ? (not sure how to spell anymore) and prednisone alternately . She hasn't mentioned any other drugs to try. We are still waiting on the ACE level. What is mtx? Thank you so much for listening. I broke down to my hubby today about how alone I feel all the time. He was very understanding and really does do his best for me. I know I have his support and that of my oldest daughter, but I need to know others with sarcoid. I feel so alone sometimes. I have never met anyone with it. Most likely because I used to always push it back and try to act like I was okay and wanted to ignore it, so I never reached out. Again, thank you. Big hugs right back atcha.

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