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Raynaud's Association
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Topic Title: New Member
Topic Summary:
Created On: 01/22/2010 03:10 PM
Linear : Threading : Single : Branch
   New Member   - wkimbell - 01/22/2010 03:10 PM  
   New Member   - Sarah - 01/23/2010 07:09 AM  
   New Member   - wkimbell - 01/25/2010 12:45 PM  
   New Member   - Sarah - 01/26/2010 08:28 AM  
   New Member   - puffitoes - 01/28/2010 10:15 AM  
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 01/22/2010 03:10 PM
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wkimbell

Posts: 2
Joined: 01/22/2010

Hello everyone, My name is Bill I'm a 37 yo male living in northeastern PA. I was recently diagnosed with CREST which falls under scleroderma which falls under lupus. I become more confused as I talk to my rheumatologist.

I went on vacation this august to VA beach and my feet and hands became swollen. I called my pc physician he thought it was an allergic reaction and to just take some Benadryl and stop by when I return home. Well 2 weeks later I found out I had an ana count of 10,240 ? I'm taking so many different meds and I see no improvement in my hands, My 2 middle fingers have ulcers that give me an incredible amount of pain which is causing me tourette syndrome in the middle of the night. I'm trying the hot water / cold water treatment with some success can anyone offer suggestions on dealing with this pain?

Bill
 01/23/2010 07:09 AM
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Sarah

Posts: 2411
Joined: 10/16/2005

Hello Bill and welcome to the forum.

I am sorry that you are in pain from digital ulcers. I have also experienced this horrible pain and have tissue damage caused by lupus and an overlap of scleroderma. I was diagnosed with lupus 30 years ago and with limited scleroderma 10 years ago when I started to develop severe Raynaud's and ulcers on my fingers.

It took switching rheumatologists in 2005 to a rheum who specialized in autoimmune diseases and was recently out of medical school before I found relief from ulcers. Rheum kept trying medications and I presently am on several including nifedipine ER and a statin. I also was treated by a dermatologist who prescribed antibiotics and supervised my wound care.

Are you able to look for another rheumatologist? Perhaps one in a medical center who specializes in scleroderma. That would be my advice.

I hope you will keep us posted.

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Secondary Raynaud's with a connective tissue disease
 01/25/2010 12:45 PM
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wkimbell

Posts: 2
Joined: 01/22/2010

Sounds like good advice. I am going to try a new Dr,.Sergio Jiminez whom is the Coordinator of Clinical Trials at Thomas Jefferson in Philly Area. In the mean time my current rheumatologist is going to try celcept which is originally used for transplants to knock down the ANA. Any advice on handling the pain with the digital ulcers? Percocet doesn't even touch it some days.
 01/26/2010 08:28 AM
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Sarah

Posts: 2411
Joined: 10/16/2005

I did not find that pain medicine was the answer and I tried several. It took the edge off the pain but that was about it.

Lidocaine ointment helped numb the ulcers during the night so I could sleep. There is a generic prescription form that you may want to ask your doctor about.

I have been taking Cellcept for 4 years. Rheum has recently started lowering my dose since my disease has been fairly stable. Good luck with it.

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Secondary Raynaud's with a connective tissue disease
 01/28/2010 10:15 AM
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puffitoes

Posts: 2
Joined: 01/28/2010

I have found that Epsom salt soaks in lukewarm water helps with the pain and speeds up healing. Also, 800 mg. ibuprofen allows me to sleep.
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