I just now found out that a positive rheumatoid factor can occur not just in rheumatoid arthritis, but also in a few other autoimmune conditions, so I'm wondering if any of you have ever had a positive RF, and if so, does this mean anything with regards to lupus.
My saga is getting more and more confusing - I've been having a variety of lupus-like symptoms, as well as a pattern of attacks and flare-ups, and 3 months ago my ANA and RF were negative when my regular doctor did them, but sed rate elevated. Have seen a rheumy a few times, who has been useless, other than giving me a loose fibro diagnosis and thinking all my issues could be due to sleep apnea (which I don't have - had a sleep study done). I shared my labwork from the rheumy with my allergist when I had allergy testing done last month, and a few days ago he called me back saying he wanted me to have some more labwork done, because he thought my rheumy missed some things. I got excited, thinking my allergist might actually find something, since no one else has! But when I got the lab request to take to the lab, I saw it was all the same labwork I had done 3 months ago with my regular doc, that he didn't know about. Grrr. Almost decided to go home, until I remembered all of these values can change, and it would be good to see if my sed rate was going down, and since my labs are covered by my insurance at 100%, I thought what the heck, I'll get them done.
Well surprise, surprise, my sed rate HAD gone down quite a bit, although it is still slightly elevated - but I've been taking Voltaren and that's helping a little. My hemoglobin has gotten worse, unfortunately. But in 3 months my RF went from negative to positive?! So even though I have less inflammation in my body, I have significant antibody activity going on? Does that even make any sense? What exactly do these antibodies mean? It's only slightly elevated (25, doc said normal was under 20), but this is the first positive antibody test I've had, since my inflammation flare-up a few years ago, this past December, and the one this April that has not yet completely gone away.
I'm pretty certain I don't have RA, because nothing is visibly wrong with my joints. I get joint and muscle aches and some pains, but that's all. The only thing the rheumy seemed to know about was traditional arthritis, so I think he would have caught that. I'm still having a lot of fatigue, sun sensitivity, mild skin issues on my cheeks, migraines, and just developed possible minor seizures over the past 2 months, so now I'm seeing a neurologist, and in the midst of a TON of testing - unlike the rheumy, she is taking me VERY seriously. It's funny, because when I saw my regular doc last week, she said that she thought we were finally on the right track with the neurologist, since the rheumy really wasn't very helpful. So here I was accepting that maybe all of my issues could have been neuro related - and NOW I get a positive RF, which is connected to autoimmune issues? It just doesn't make sense.
I have been suspecting I am in the early signs of developing SOMETHING autoimmune, but this is all getting a little hard to process. I have been so focused and freaked out about these minor seizures lately that I had just about convinced myself not to get a second opinion with a rheumy at a teaching hospital - but I think I might need to reconsider.
If anyone has any insight about rheumatoid factor tests and what any of this means, I would appreciate it! Thanks for letting me babble.
Hi, Minerva. I'm sorry you've been going thru this without getting clarity.
About RF: My understanding is that it can be positive in lupus, as well as in RA. Have you seen Dr. Daniel Wallace's book on lupus? It's a great source & does speak to this point.
About diagnosing RA: I think its diagnostic standards are complex and layered. For example, you must meet some minimum number of the criteria; some have to persist for "x" weeks to be counted; etc. In other words, the standards go WAY beyond having a positive RF, which isn't enough for a Dx. You could find the real criteria by trying the search box (above, left side).
About your POSSIBLE MINOR SEIZURES: Obviously I'm only a patient---but, gee, what has the neurologist said & done about those??? A thought: have your specialists discussed & tested for antiphospholipid syndrome (APS), a clotting disorder? There's a "sticky post" on APS at the top of the thread list (in with the "stickies" on lupus). Plus, you could find a great deal more using the search box above. FYI, APS may exist "standalone", and it may exist along with lupus.
I hope more people add their thoughts soon. We'll all be watching for your next updates. Thinking of you & sending warm wishes, Vee
Thanks so much for the info, Vee - and for thinking of me. I guess I really do need to find Dr. Wallace's book - it seems as though it is extremely informative about so many things!
Yeah, I don't really fit most of the characteristics of RA, other than the pattern of flare-ups and remissions of symptoms and the elevated bloodwork indicating some kind of inflammation. The little bit I've read about RA makes it seem as though the arthritis is definitely more visible - joints are visibly red, swollen, that sort of thing. And so far that's not me. The few times I've had some redness it's been the backs of my hands, my knuckles, and tops of my feet, but that was sort lived - don't think I've ever had any major swelling. I've had 3 rheumy appointments - nothing was visible at those times and based on that he doesn't think anything is wrong with me. If I had classic arthritis symptoms, visible symptoms that persisted from day to day, and classic bloodwork this rheumy could probably treat me - but since I don't, there's really nothing he can do for me. I'm sure my regular doc will forward these latest labs to him, but since the RF is so low, I doubt it would matter in his eyes. And I have no intentions on going back to him anyhow.
The rheumy did actually test me for APS, I'm assuming because of my migraine and m/c history - I had both the anticardiolipid and lupus anticoagulant antibodies tested, and both negative. So those antibodies are not contributing to my increase in migraines and development of seizures - unless they can suddenly increase as well. Can they? I just don't understand these antibodies at all. And I haven't been able to find any connection between RF and seizures at all - other than that they can both occur in lupus. I did find some info from an online article possibly linking the RF antibody to anti-DNA antibody (I think) or some other lupus-specific antibody, I just don't remember exactly where I read it, would have to find it again. But my ANA is still negative, so that wouldn't make sense.
Regarding this "possible" seizures, I only call them possible because my neuro hasn't officially diagnosed me. And because it freaks me out. But they are seizures, just not major ones, and fortunately I can tell when they are coming and they almost always occur when I'm relaxed or about to rest. These started just over a month ago (which was AFTER the rheumy ran his bloodwork on me) and I saw a neurologist 2 weeks ago. Contrary to the rheumy, who I don't think ever took me seriously, after one initial neuro visit and exam, I was scheduled for an MRI, sleep-deprived EEG, some doppler study that looks at the blood vessels and flow to my brain, and a sleep study. AND she started me on Topamax, which is an anticonvulsant drug used both for seizures and to prevent migraines - since I'm having both she thought it would be perfect for me. This was all after one visit - whew! I'm pretty overwhelmed with all of this right now, which is why I'm surprised this RF thing would pop up out of nowhere.
Of course all of the rheumatic or autoimmune stuff might not be connected at all to any of this neurological stuff. But re-reading over the APS syndrome info reminded me of how my mom has been pushing me to start taking an aspirin a day, because she has been told she has "sticky" blood - however all of her bloodwork is borderline, so she's not on any prescription meds. When I described some of the odd sensations in get in my left arm sometimes (kind of like a pulling sensation of blood trying to force its way through a vein, very odd) she brought up this "sticky" blood thing to me. So who knows. Maybe this doppler study will reveal something. My follow-up with the neuro is early next month, after all of this testing is done, so hopefully I'll have some more answers then. I swear, maybe I'll end up at a hematologist next!
Last edited by Minerva78; 07-12-2007 at 09:39 AM.
Reason: Word correction
hi Minerva, just read your post, I totally understand what you are going through I was diagnosed first with lupus, then another doc said no it's not lupus it's RA, was treated for that for awhile, nothing was happening, kept feeling worse and worse, switched docs again, this time they said, well.., it's definitely Lupus and not RA, so I went through the treatments for lupus again, still nothing, finally found a different doc and she ran all kinds of tests on me, came back and said that I was one of the rare occasions where the deseases will overlap each other, so it may have started out as just lupus but now it is both lupus and RA. So I have symptoms of both. Does that make sense? so, I don't know if you could be one of those cases too!! Anyways, my prayers goes out to you, it really really bites that anyone has to live with this, but..., all we can do is hope, thanks for reading
Thank you for sharing your story, tipima. I can't imagine how frustrating that must be, having to go back and forth with diagnoses and treatments! Do you feel you have a more effective treatment now that you are being treated as a person with both RA and lupus? Fortunately, I don't think I'm at the point of being diagnosed with RA - even with the positive RF the only other classification I fit is that I do have morning stiffness for more than 1 hour. I don't have any visible swelling or redness or visible problem with my joints. I've only had visible redness a few times, and it's only for a short time. My issues are with the things you can't see - the aches, pain and fatigue. The problem is some days I feel okay and some days I feel terrible and I want to be able to prevent more terrible days, so we keep playing around with a cocktail of treatments without knowing "what" is wrong with me. After a flare-up that has lasted 3 1/2 months and counting I just know whatever is going on is not going away. I just wish there was a way I could prevent this autoimmune stuff from developing, or at least prevent these flare-ups because I know getting a diagnosis involves feeling worse than I do now! Oh well.
Vee, if you read this again (or anyone can answer), I have a question: I looked back over my lab results from the rheumy and I noticed I was mistaken about something. I was NOT tested for the lupus anticoagulant, only the anticardiolipin antibodies, IgG and IgM, and both of those were negative. Does that matter? Do you think it's worth pursuing if I've had a negative lupus anticoagulant in the past? I know I've had a negative one of these before, maybe about 3 years ago, but that was with fertility testing, and before any of these problems started. I don't know, I just noticed that, and with you asking me about APS again with my migraines and now seizures, it just got me thinking. I guess I think too much.
I have had weird symptoms moving around my body of severe pain-lasting a few days to a few weeks. My internists ordered some labs and they came back positive antinuclear antibodies at 1,197 positive being >120. My RA factor also positive at 22.2 positive over 13.9. Has anyone had results like these? Can not see Rheum/immune doctor for 2 weeks. My internists office said I had some sort of connective tissue disease.