Just Diagnosed - Newb with questions

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New Member

Date Joined Jul 2009
Total Posts : 2
   Posted 7/1/2009 4:53 PM (GMT -6)   
Two weeks ago my girlfreind who is 28 began having joint pain in all her joints but most affected were her hands and feet.  They became very stiff and painful to move within a couple days.  She also had swollen glands in her neck.  We went to the doc to get her checked out and they prescribed her prednisone and took blood/urine.  The prednisone worked immediately and the doctor sent the blood to the lab for some type of lupus specific tests.  I am not sure what all was done, but I know the ANA test was very high and there may have been some other lupus blood tests that helps diagnose, but I am not sure exactly what was done.
All I know is that after the blood test the doctor diagnosed my girlfreind as having lupus and referred her to what you all call a "rhuemy" tongue    After doing some searching I've found that to be diagnosed you must have 4 of the symptoms from the list of traditional symptoms.  She doesn't have a rash, no fatigue, no sensitivity to sunlight... only joint pain and swollen glands.  I'm wondering how accurate a diagnosis can be made with blood work and these symptoms..  ??
A couple days ago she finished the prescription of prednisone and the joint pain has started to come back slowly, and the earliest appointment she could get with a rhuemy is A MONTH away...  Seems like something ought to be happening faster than this!  Is it just me wanting answers to quickly?  I have so many questions and the answers I find only lead to more questions.  I'm a man.. and I need to be able to fix things, and I just keep going in circles trying to figure out whats going on here..
Also, can delaying treatment/diagnosis by a rhuemy cause permanent joint damage?  A month seems like an eternity before we can get on a treatment plan. 
Any responses with advice, similar experiences, or info would be greatly appreciated!

Forum Moderator

Date Joined May 2005
Total Posts : 6935
   Posted 7/1/2009 6:53 PM (GMT -6)   
Quite often it does take a while to get the first rheumotologist appointment. You can ask the office to put you on a wait list, so that if anyone cancels they'll call you.

Delaying treatment or diagnosis will not cause permanent joint damage -- but maybe the first doctor could extend the prednisone treatment a bit longer? How much was she given?

Often diagnosis takes a long time or does not come at all since this disease has so many different ways of presenting itself -- a good dr will treat the symptoms immediately anyway. Only a lupus-aware rheumy can make the final "Lupus" dx. Lupus is often called the disease of 10,000 faces.

I suggest checking with www.lupus.org to find your local chapter, then check with them to see if the rhuemy you've chosen is active locally -- the ones who really know how to dx and treat are usually connected to the group!

Hope that helps, welcome to the forum, and post more questions as they arise!
(See the Lupus Resources post at the top of the page for tips on how/what to prepare for the rheumy visit.)
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882

New Member

Date Joined Jul 2009
Total Posts : 2
   Posted 7/1/2009 10:28 PM (GMT -6)   
Thank you for the info! I will check out the site and will be looking forward to seeing the doc and asking questions.


Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 7/2/2009 10:07 AM (GMT -6)   
Welcome Nick. I'm sorry that your girlfriend is going through a tough time right now. You are so good to be by her side and help and get info and find out more about the disease. It always touches my heart when family and friends post here :)
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

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