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Posted 5/9/2011 6:55 PM (GMT 0)

Hello,

My name is Heather and I have just recently been diagnosed with Lupus.  I have had Crohn's disease for 10 years and this February began having severe joint pain and swelling.  I went to see a Rheumatologist and based on my symptoms she thought for sure that I would have Rheumatoid Arthritis.  However, when the test results came back my RF and CCP were negative.  My ANA was positive so she told me that I actually have Lupus.  I am starting methotrexate today and am on prednisone which has helped me function during the day.  I had my GI and the Rheumatologist talk and they both feel that it is not a drug induced Lupus.  I am on Remicade for my Crohn's and wondered if it were possible.  They both feel that it is not, in my case. 

My question is this...what symptoms did you have when you first started out?  I have not have any rash issues, sensitivity to sun ect.  The only symptoms I have had are joint pain/swelling, bumps on my finger joints, and fatigue.  Do some of the other symptoms come on as time goes by and the disease progresses?  I feel like this diagnosis has been dropped in my lap and I have no idea about anything.  I have done some research on Lupus.org.  Are there any other books or websites that you recommend?

Thank you!

Posted 5/9/2011 7:20 PM (GMT 0)
"The Lupus Book" by Daniel J Wallace, MD is the most recommended lupus reference around. It's often referred to as "The Lupus Bible".

Lupus is also known as "The Disease with 10,000 Faces" because it manifests so differently from person to person. Everyone can have various symptoms at various times, it can start in one person with joints, in another with skin, in another with an organ, and so on...a hyper-active auto-immune system that can decide at the drop of the hat that some normal part of the body is foreign and must be attacked -- which causes inflammation and pain.

Various symptoms come and go as time passes, but there is no definite "progression" or "remission" to the disease. Instead we speak of "quiet periods" and "flares". Lupus is unpredictable and while this year it may be active in one place, next year it could be doing something totally different.

The important thing is to take your medications as directed, and learn what kinds of stresses cause you to flare -- for some sun is a killer, for others it might be the stress of a tax deadline or eating rich foods too many days in a row -- everyone is different. Keep reporting all symptoms to your doctors, and be diligent about eating, sleeping, mild regular exercise, and avoiding stress.

Hope that helps, keep asking away!
Posted 5/10/2011 1:08 AM (GMT 0)
Thank you for your response!  I will be checking out those books that you mentioned.  I think that, for me, the more informed I am the better I feel like I can face an obstacle.
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