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#1 rlbrussell


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Posted 20 October 2006 - 05:51 PM

I just got back from by 6 month check up at Johns Hopkins. It looks like I now have myositis. I will be starting 60mg of prednisone for several weeks. I am really freaked out and I am so discouraged. Not only do I feel broken pysically but my spirit feels broken too.

Thanks for listening,
Diffuse Sclero
dx Jan 2006

#2 Patty


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Posted 21 October 2006 - 01:17 AM


I feel for you hun I really do and I understand how you feel. I have dermatomyositis.( its the same as you but with skin hence the derma) Please keep us imnformed how you are doing. I know that one of the staff members here has it also. I am sure as soon as she sees this she will be along with kind words and info for you.


If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#3 Heidi


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Posted 21 October 2006 - 04:51 AM

Hi Rosa,

I am so sorry to hear of your latest diagnosis (I am sending you a great big virtual hug). I do know how frustrating it is to hear that kind of news and how discouraged you must feel. I do hope the prednisone does wonders for you and you feel better soon! Just remember that tomorrow is another day!! We are all here for you.

Warm wishes,

#4 janey


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Posted 21 October 2006 - 05:36 AM

What a bummer! I'm so sorry to hear that you've been diagnosed with myositis which I assume is polymyositis. That's another one of those wonderful connective tissue diseases like sclero. Well I'm in the same boat as you are Darling. I have dSSc and poly. I was diagnosed with both at the same time 3 years ago. The high dose prednisone is the normal first line treatment and is very successful for the majority of people. My rheumatologist chose not to go that route because at the time, my sclero was very active and he said the prednisone would not be good for the sclero so we did low dose prednisone (5 mg/day) and methotrexate. That did help for quite a while, but a couple of years later we added IVIg infusion because we just couldn't get that CPK down below 200 and it had been 2 years. Well, that did the trick. August 2005 my CPK took a nose dive to below 100 and has been holding there for more than a year. I can certainly feel the difference. Apparently, the prednisone route has a much faster response than the MTX route, so I hope that is the case with you.

I don't know how much you know about it so I'm giving you the link at the Mayo Clinic on polymyositis. Also, I have been living with it for more than 3 years now and have done losts of research, so please feel free to write me anytime. I know the initial diagnosis is hard, but they did catch it and are treating it aggressively. So that's a good thing. Please, keep us informed on how you are doing. You've got lots of friends here.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)