It's been a while since I've visited the Healingwell forums, as I used to be a regular on the Ulcerative Colitis boards but my UC has been in remission for some time now. Plus, my work blocked HW so I had less time to visit *shakes fist*.
I have been on Remicade since January 2009. It has been controlling my UC great, but now, I have a different issue to be concerned about
I remember distinctly two incidences, the last of which was in April 2009, where I had a severe flare up of strange symptoms. My joints had started to hurt, and it rapidly got so bad that I literally couldn't walk. I had a sore throat, a mouth full of ulcers, I had a fever of 104 for four days straight, chills, sweats... I thought I was dying. My doctor did all sorts of test (though, none for lupus) and they were all negative, so she gave my antibiotics and sent me on my way. Right around this time, I also received my Remicade infusion, and all the symptoms cleared up. It didn't come back for awhile, so I assumed it was some weird flu (which is what she was calling it) and paid it no mind. Then, in March 2010 I got pregnant and had a healthy baby girl in December 2010, colitis remaining in remission the whole time. Everything was great!
Well, in January, the joint pain started to come back. And it gradually got worse until I (finally) got my Remicade, a month late. I figured I was in pain because I was late, but since then, I have the same symptoms every 4 weeks, like clockwork. I get infusions every 8 weeks, so it goes: Infusion... 3 or 4 weeks later my hands and wrists start to hurt, then it spreads until nearly every joint in my body hurts, lasting for 4 weeks until I receive my infusion. During each episode, I also have at least 4 ulcers in my mouth at all times, severe fatigue, a low grade fever, an elevated SED rate, blood in my urine ("UTI"), CONSTANT headaches, and often a sore throat. When I am not having a "flare" of these symptoms, I have constant fatigue, depression, headaches, and a general feeling of being unwell. All the time.
So my GI finally referred me to a rheumatologist, who I saw this week, because my ANA was positive and today I received a copy of my full bloodwork from the lab (I work in the hospital, so I like to check things out for myself..ugh).
Here were my results. (test performed by Quest Diagnostics)
ANA: positive 75 A IU/mL (1:1280-5120) Homogenous
dsDNA Autoantibodies: 20.4 IU/mL
nRNP/Sm IgG antibodies, SS-A and SS-B antibodies, Scl-70 IgG antibodies, and Ribosomal P Protein Antibodies are all Not Detected.
C3- 150mg (normal range)
C4- 17mg (low normal range)
Urinalysis showed blood, leukocytes, WBC, and mucus in my urine. I have no symptoms of a urinary tract infection. Bloodwork also showed low sodium and high MCH (sometimes a sign of anemia, I guess).
I was NOT having a flare up of symptoms at the time of the test, though I would be interested to see how the numbers change when I am and will be requesting a repeat in two or three weeks if she will allow it.
So, my Healingwell friends....... Does this look bad for me? Am I going to have to add another incurable disease to my medical history? My follow up appointment isn't until December 6th and I'm probably going to go crazy thinking about
it until then :(
Post Edited (ediekristen) : 11/18/2011 7:15:32 PM (GMT-7)