Need support - Immune Disorders Message Board

pambyboo · 01-25-2006, 05:40 PM

I am so frustrated right now I could scream!! I've been seeing a rheumatologist for the past 1 1/2 years for cross-over between lupus and rheumatoid arthritis. Basically, to make a long story short, for the past ten years I've had +ANA and RA factors (although low titers), miscarriages, "villitis" in pregnancy with two IUGR babies, arthritis, malar rash, neutropenia, mouth ulcers, a DVT, low positive IGM antiphospholipid antibodies- I think that's about it. Anyway, my rheumy wants to start me on methotrexate, and I don't want to start it. So I go to the teaching hospital here, who tells me I just have lupus and APS, and that I don't need to start any other drugs. (I take Plaquenil). I go back to see my rheumy who says they don't know what they are talking about, that I do have RA too and I do need to start the metho. SO- I figure I'll go see the Mayo Clinic. BAD IDEA! I didn't like the doctor. She was very hurried, wouldn't let me speak, basically blew me off. Ended up telling me that I don't have lupus or RA, and I should be happy about that, that what I have at the most is UCTD. (Oh, and that I didn't need to start the methotrexate). She is basing this on the fact that my ANA and RA titers came back negative (great timing- that's only happened one other time in 10 years- I knew I should have gone when I felt crappy). Although my C4 level came back mildly low (for the first time), and my IGM was still a little high. Now, I've had 6 of the 4 defining characteristics of lupus over the past 10 years. I don't understand this crap anymore! I've basically decided that the doctors don't know crap. When I asked her about the 6 characteristics I've had, she just blew me off, and said that I didn't want to have lupus or RA, and I didn't want to be defined as that. WELL DUH! I just want a straight answer and to know what the hell is wrong with me. She told me to look into other areas of my life as the source of my fatigue- because after all "she was tired too". I wanted to slap her.
Guys- do any of your labs go back and forth? Should I accept the UCTD diagnosis? Should I start the methotrexate? (My rheumy wanted to start it because I was still having painful days more often than good ones). I just need someone to listen that understands. I guess I shouldn't have gone looking further than my local rheumy. He is a brilliant man, just hard to pin down for answers- but at least he listens to me.
Any info or help would be appreciated. I'm about at my wits end...about ready to just give up!
Pambyboo

marky1956 · 01-25-2006, 05:48 PM

I would listen to your rhumie if you're confident in his recommendations. With everything you stated, it sounds like lupus (too much going on). And "yes", ANA, DNA results can and do fluxuate pos/neg. I am still in the process of testing, but my ANA results have come back 1280, 1280, <40 (neg)...go figure. Even with the negative result, the way I feel plus the previous 1280's, I know something is going on!!

GL with your meds.

o2b5ft · 04-26-2006, 12:21 PM

Hello, It sounds like Lupus to me too. I have been to my rheumatologist and wants to start me on Plaquenil. Can you tell me about it? I have read some of the side effects (I probably shouldn't have done this) on the web and it frightened me. I have an undifferentiated auto immune disorder in the same family as lupus, antiphopholipid syndrome and Raynauds. Luckily, the auto immune connective tissue disorder hasn't affected my organs, but I have fatigue and pain in my legs, feet, and wrists (at the moment).

Please, if you could give me some insight on Plaquenil, I would be most appreciative.

Thanks. I hope you start feeling better.

pambyboo · 04-26-2006, 06:11 PM

Plaquenil has been a godsend to me. I feel probably 80% better since I started it 1 1/2 years ago then I did before. I notice mainly less fatigue, although I still ache quite a bit, I don't think it is as bad. The only side effect I have noticed at all is that it gives me TERRIBLE heartburn, and I've had to start taking Prilosec every day. I've heard that you can reduce that symptom by getting the name brand instead of generic, but I can't afford the name brand. I haven't had any problems with my eyes (maybe an increase in floaters?), and my eye doctor said in all his years of practice (he's getting ready to retire) he's never had anyone experience any bad side effects. I too was reluctant to start it, but now am SOOO glad I did.
I however refuse to start the methotrexate until they prove to me that my joints are being damaged. (So far so good). The plaquenil takes months to start to work (3-6), and just when I was about ready to give up, I noticed it was helping.
Hang in there. Plaquenil is cheap and relatively safe, and can make a big difference. I think it's worth trying.
Take care.
Pambyboo

Shashy · 01-09-2007, 08:49 PM

I don't have much help to offer other than I know the feeling. I have a hard time even getting a doc to test me for ANYTHING at all!! She says she did one ANA test and it was neg. Doesn't want to test me for porphyria because she doesn't think I have it "it's so rare". "Abdominal pain can come from depression" WHAT THE CRAP!! I wanted to drop kick her! i don't know what to do either, but it's some soothing in knowing that I am not the only one with this kinda problem. Everyone other than my mom and dad think I'm nuts, and that "its all in my head". i feel your pain.

Good luck-