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

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.

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. :)

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

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-

Hello, just thought I'd share my feelings on the docs and tell you alitlle of my situation. Don't ever believe the doctor if you feel its not right. You have to be your own advocate. Three yrs ago I suddenly became very ill, starting swelling ungodly, extreme muscle pain, cramps, knots on legs and arms, etc. My doc at the time said I was just gaining weight & I was stressed out. I continued to stay on him that something wasn't right. Long story short, after many doctors, most thinking I was nuts. I was diagnosed with a rare autoimmune disorder: EMS, connective tissue disorder, & APS. Although I have a good doctor now, I have little faith in doctors taking anyone seriously.They are only people who can make mistakes or overlook a serious condition. So you have to do your own research, become as knowledgeable as you can, and do what you think is right even if your doctor thinks otherwise. I'm not saying not to respect his opinion, but you know your body and what's best. That's the only way I've dealt with all my hell. I still have pain on a daily basis, I am disabled, and this disease has turned my world totally upside down. I try to just live each day, and enjoy the pain free times when they come. My doc also just put me on Placquenil. Hope it works for me. I didn't want more meds but at this point what's one more. Best of luck to you all. And we are not crazy.

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


I totally understand how you feel.. I almost feel as if you all are describing my experiences.. I have been diagnosed with Undiffentiated Connective Tissue Disease. I have been sick for about 3 months, gained 20lbs, have joint pain, weening off the prednisone, just started plaquenil 2 months ago, just stopped taking Zyrtec (not sure if it was doing anything b/c I still have the hives I had 3 months ago), seen every specialist there is, got a second opinion from another Rhuemy and still I'm undifferentiated.

Positive ANA, sed rate was 52, then went down to 28 and back up to 87 and finally normalized (not sure if the prednisone had to do with it). ANA still comes out positive, but neg for lupus, RA or Sjrogrens.

I'm at my wits as well, but I think we just have to wait it out.. I think we have mild cases or early stage of whatever auto immune disease it is.. unfortunately, i think unless a new symptom (major symptom) appears or bloodwork changes to a positive for a specific one (meaning it'll probably be a later stage (I'm assuming)) we will still be Undifferentiated.

I went to three different rheumatologists before I found one that I felt actually really understood the lab results. It made me feel relieved. I agreed with his diagnoses, accepted that & set about trying to find out what works, maintenance wise.

Before that, I always felt like I needed to know more, have more tests, find out more, used to research on the internet all the time. It stressed me out and made me exhausted.

Don't get me wrong, I still have absolutely crap days but the good days are far outweighing the bad ones. It's taken a couple of years of solid shopping around for maintenance that works. Tried just about every alternative therapy known to man. Found stuff that works for *me*.

Don't give up. Chase that diffinitive diagnosis and then you can set about working on getting your health to a managable state. You deserve it - we all do.

PS I have SLE, hashimotos thyroiditis, sjogrens syndrome, rheumatoid arthritis, fibromyalgia and of course chronic depression (which is no longer quite so chronic, yay)