Should I be worried about lupus - Lupus Message Board

M. Dragoo · 09-30-2005, 12:33 PM

Hi
I'm a 31 yr old female. I've had seizures for about 9 yrs now. THey are very well controlled with meds. I've had two children. But since 2003 have suffered 3 miscarriages. Started doing research cause OB wants to test for some blood clotting problems. Alot of sites have lead me to read about lupus. Beside the miscarriages the only symptom I seem to have is some joint and muscle pain. It's mainly on my left hand and arm, usually the hand and arm hurt at the same time,normally with a strain across my shoulders. Only other pain is left foot and toes. Do those of you with joint pain experience it as a large area, or just your finger joints, or just your elbow, etc. No ulcers, rashes, can sit in the sun for hours, no fevers. I think the thing that most worries me about this is that everything I read says most people live for ten years after their diagnosis. Is this really true? Or is it just ones with all organ involvement? Thank you so much for anyone who replies.

pambyboo · 09-30-2005, 02:03 PM

Hello! You've come to the right place, there is a wealth of information from people here. You're symptoms are exactly how mine started. I started the same way; had a miscarriage, then had two pregnancies with complications. Both babies were "IUGR" babies, born with their weight below the 10th percentile. I was diagnosed both times with "villitis", what they said at the time was an auto-immune disorder that attacks the placenta. All of my phospho-lipid antibodies at that time came back negative. I then had a miscarriage my fourth pregnancy, again with the same results. Approximately one year after my last live birth, and 5 months after my last miscarriage, I had a horrendous bout of right knee pain for two weeks. I noticed the malar rash at that time, and saw my doctor, and my ANA test was positive. BUT--it is now 10 years later, and after a blood clot in my leg and my RA titer coming back positive, have I finally gotten a diagnosis of Lupus. My ANA has been positive for the last 10 years whenever it's been run. I also have anti-phospholipid syndrome. ("sticky blood"). Read the posts at the beginning, they are good for information.
I'm not saying you do have lupus, but that your symptoms are similar, and frequent miscarriage is one of them. Also, pregnancy has a tendency to make the symptoms worse. The 11 diagnosing symptoms (of which you need 4 to be diagnosed) are built over time, you don't need 4 all at once. I am ten years into this, and have never had the malar rash again.
Don't be scared about the life expectancy. The ten year rate was years ago before they had the drugs they have now. You can expect to have a pretty normal life span if all symptoms are well controlled. Only if you have severe organ involvement does your life span decrease.
Just learn as much as you can, and be your own patient advocate. It all will fall into place eventually, it's just a long difficult road until then.
Take care.
Pambyboo

VeeJ · 09-30-2005, 03:04 PM

Dear M. Dragoo, Hello & greetings. I agree with Pambyboo that being tested for APS makes total sense, due to your repeated miscarriages.

Arthalgia (pain but no visible swelling) & arthritis (pain with visible swelling) are extremely common in lupus. Dr. Wallace, in his excellent hardcover, writes that hands, wrists, and feet are often affected---then as the disease evolves, shoulders, knees & ankles can also be affected.

It took me years (decades?) to evolve. I never had a malar rash. When I finally did start to get rashes, they were nonscarring circles on torso & upper arms. Found out---finally---that I had a "subset" of SLE called SCLE (subactute cutaneous LE). I was ANA-negative but turned Ro-positive. I mention this for this reason: if you *are* tested for lupus, you'd want your dr. to order the full range of antibody tests all at once---as opposed to ordering ANA, getting that result, then proceeding to more tests only if ANA is positive. ANA is positive in maybe 95% or more of SLE (systemic lupus) but only about 70% in the SCLE subset---which can cause the same range of problems as SLE but more often is sparing of CNS & kidneys.

Dr. Wallace actually lists 16 (!) antibodies, complements, etc. that are markers for lupus. (Who'd have "thunk" there'd be so many?!?)

The Wallace hardcover is a tremendous resource, and there's another fine hardcover, by Dr. Robert Lahita. Both are found in most libraries & bookstores. With best wishes, Vee