Scleroderma and/or Systemic Sclerosis

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LizbethAnn
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/22/2010 6:34 PM (GMT -7)   
My diagnosis turned from Lupus (10/98) to Scleroderma in October of 2003. I did not notice a forum for us Scleroderma patients so I thought I'd start one. It is a rare disease. I think maybe 300 cases in Ohio (someone correct me if I'm wrong) with Ohio having the highest incidence/s of the disease. Look forward to sharing with people familiar with the disease.

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/22/2010 7:56 PM (GMT -7)   
hi lizbeth, welcome to the group. we actually are all kind of grouped together with different types of autoimmune diseases. I have 2 rhummies that say I have scleraderma and my internist say it's lupus. I just let them fight about it. They pretty much treat them the same. Do you have it on your skin or your organs? I have a little bit on my skin nothing that noticable but my lungs are destroyed and my liver is started to show mild symptoms. I've gone through all the test for a lung transplant but I have to be sicker before they will do it. I've been on oxygen 24/7 for the past 6 years. I spent lots of time last year in hospital and nursing homes this year has been better except I'm much more tired. I've been running all over the state for the past 2 days to doctors and I have to go to bed. I just saw your post and wanted to let you know you are not alone. Oh also if you get a chance to look up choctaw indians and scleroderma together you might find some interesting info about how many of them have it too. Just for some interesting reading.
Look forward to getting to know you.
blessing
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,citracal,pottasium, vitB12 ,iron,xopenex,advair,spirivia,soma,Vitamin D, cybalta
 
Dx lupus, scleroderma, pos. fibro, high blood pressure. COPD, need left lung transplant. cervical cancer survivor, osteoporsis.
 
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/23/2010 4:08 AM (GMT -7)   
Hi there, just wanted to welcome you to the forum! I know a few others that will probably be a long in a bit with some great suggestions/advice!!!

Dreamer1979
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/17/2010 6:55 AM (GMT -7)   
Hi there,
Just found this forum by searching online.
I got diagnosed with Coup De Sabre linear morphea/scleroderma...so wondered if anyone else was dealing with anything like that?
I just started Methotrexate, so any group on here that has MTX experience would be a great comfort too.
Been 2 weeks on 5mg and just went up to 10mg MTX today. Hoping the side effects will be ok.

emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 8/18/2010 9:43 PM (GMT -7)   
Hi girls,
I also have scleroderma. A great site is sclero.org. But don't the people here really can't be beat!
emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia
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