Irritable Bowel Syndrome Message Boards | lupus/RA -- what to expect/ask rheumatologist?

Hi, Jen! This is kind of long, but I hope it helps. I've been really sick the past three years, thinking it was just frequent IBS attacks getting me down, but then realizing that a lot of other symptoms were not normal IBS symptoms. About a year or two ago I had an echocardiogram because I had open-heart surgery as a child and one of the doctors I saw was worried something might be up. But that was normal. Still feeling bad and starting to have anxiety and panic attacks, I continued to see my doctor and push for more answers, especially since I had similar problems in college.

So, my PCP ran the following blood tests (about six vials of blood):

CBC (complete blood count)
Sedimentation Rate
Comprehensive Panel/Metabolic
Glomerular Filtration Rate
Iron and TIBC

These came back normal, even the sed rate. But my PCP knew something was wrong because I wasn't getting better and was suffering from the following: pain with the slightest touch, high blood pressure when I was in pain, difficulty walking, insomnia, strange rashes for the past few years, general weakness, fatigue (sleeping 14+ hours a day), weight loss (down to 104 lbs, so about a 20 lb weight loss in less than a year), joint swelling...oh, and then one week my earlobes swelled up and then another week my right nostril was inflamed! Anyway, because of the muscle pain and swelling and moving and feeling like I was a hundred years old, she sent me to the rhuemy.

The rheumatologist checked my joints but couldn't feel any swelling except in my feet. He said this was good because he could tell my joints weren't damaged. He also moved my limbs around, not sure how to described it... He rotated my arms and legs, bent my fingers and toes. He also checked my skin and asked a million questions about my health history, symptoms, and family history. Be sure to bring a list of symptoms and find out if any family members have autoimmune diseases; he also asked if I had ever experience seborrheic dermatitis, eczema, sun sensitivity, rashes, or frequent fevers. Then he ran more blood tests (about four more vials):

CCP
ANA Lupus Analyzer Panel (5 different autoantibodies test)
some thyroid tests
CPK
RA factor

I ended up having a positive ANA with positive dsDNA autoantibodies (this is positive in 80% of people with lupus) and testing positive for the RA factor. So then the rheumatologist diagnosed me with lupus. He said I had a mild case of lupus (Oh boy, mild?! I really don't want to know what it's like to live with moderate or severe lupus!) because it hadn't affected my organs. After that diagnosis, he had me do a urine test to make sure my kidneys were fine. That came back normal as well.

Now I have to see him every six months and have blood tests once a year to monitor lupus activity. I also have to take Plaquenil/hydroxycholorquine indefinitely, even once my lupus goes into remission.

I just went fot my three month checkup on Tuesday. No blood tests, but he just wanted to see how I was doing with the medication (very well!) and to make sure I see the eye doctor every six months (a very rare side effect of plaquenil is vision loss). I asked him if I should expect to get sick (like colds or the flu) more often now, but he said no because Plaquenil is NOT an immunosuppressant. He also said I could still have flare-ups, but they'll be very rare as long as I'm on Plaquenil and make sure not to over exert myself or tan.

Please ask if you have any more questions. Oh, andLab Tests Online is a great resource if you want to find out more about various lab tests and screening for different diseases.

Edited by Maria!Maria! (06/29/06 02:30 PM)

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