Lupus Support Group

So over the last week or so I have started to get some symptoms back of my "lupus." I quote it as so only because I saw my rheumy last week and she says she is calling me "UCTD w/features of SLE" because I dont quite fit the criteria of it even though the criteria is not the best to go by alone. She said basically I couldn't be put into a clinical trial because I do not have all the required symptoms. I swear I wanna hurt someone lol Im so tired of the back n forth crap. So should I consider that I have lupus or not? Should I consider having MCTD?

She also said that its strange my "lupus" seemed to go away with the pregnancy because usually lupies remain the same symptoms wise and rheumatoid arthritis patients are the ones who "feel like new." I cant stand these autoimmune diseases!

She also said she thinks my disease will stay pretty quiet during the pregnancy, but because after having my son is when all this really started then she wont be surprised if i have a bad flare after and need to be put on prednisone. She fought me about prednisone before when I didn't feel well on the plaquenil still and now she's just like well you will probably need it so ok. These drs throw me for a loop sometimes! lol

With that said, my symptoms are not totally gone anymore. I have been having very very light rashes reacting to the sun/lights, burning pain in my legs again along with aching & some joint pain/puffiness in the mornings. Headaches which I cant tell are tension headaches from pregnancy or not. Ulcers have come back some which were completely gone for weeks! I am waiting on blood & urine to come back that I got done in the midst of these symptoms. Any thoughts/opinions?

In speaking of the burning pain leg symptom, I want to post another discussion specifically about that. Since I have been having the symptoms lately and am not on meds for it anymore due to the pregnancy, I have some questions for people who have had experiences because they never figured out what exactly it was. More on that in the other post! Thanks and hope you feel ok. -Britt

*11 weeks 1 day today-March 7th 2010*

Post edited by: Mommyof1, at: 03/07/2010 01:13 PM

Hi Brittney. From your previous and current posts, you have seemed to describe more than the 4 criteria necessary for a diagnosis of lupus. If you feel that you need a diagnosis for correct treatment, perhaps a second rheumatology opinion is a good option. I wish both mother and baby well, and hope that you will receive adequate treatment soon.

PS: the Lupus Foundation of America also has a section on lupus and pregnancy, and the symptoms to expect during flaring.

Marie

Post edited by: Looopie, at: 03/07/2010 11:49 PM

Yeah from what ive read and ive seen the list of criteria, i think i have 4-6 of them if you count my idiopathic epilepsy as 1. I will check out the symptoms list and thanks so much.