I have posted a few times on this board, but the majority of my posts have been on the back problems board. I go to 4 drs for my back, and one is a rheu. dr. He seems to think I have Lupus, and that I am ANA negative. He says it is not showing up in my blood work. I don't know that I agree. Absolutely nothing shows up in my blood work. Wouldn't something else be off even if the ana was negative? The main problem I have it back pain. I know I have some damage in my back, but my pain is far worse than the amount of damage. Would Lupus cause localized muscle pain like that? I would think I would be suffering from a more generalized pain. Also, I do have some other quirky symptoms, but they can be explained by other things, and could just be coincidences. Like mouth sores occasionally, TMJ off and on, wierd rash on my back, etc. I don't know and I am so frustrated. My rhue. dr prescribed Plaquenil, but I don't know if I feel safe taking it if I don't have Lupus. Can anyone help with this?
Thanks,
Graciegirl

It's possible that you could have a couple different things going on. In addition to your back problems, it's possible that you have some type of connective tissue disease or something else based on the some of the symptoms you've described. A negative ANA doesn't necessarily rule out lupus or any of the others. Lupus does not affect muscle but the joints so I don't think your back problems stem from lupus.

Before starting the plaquenil, I'd ask the doctor why he/she feels the need to presribe this. Get some answers--don't be afraid to ask questions. I'm sorry I couldn't be of more help--good luck!

Dear GracieGirl,

I am SOOOOOOO curious about the rash on your back. I have a subset of lupus = SCLE. It's MAIN ("characteristic") rash is different than BOTH "discoid" and "malar". The rash can be anywhere but typically favors the upper torso (upper back, upper chest, and upper arms). The rash can look like a small raised disc in early stages, then later turn into big rings with clear-ish centers. OR, it may be in a different form, kind of a blanket pattern.

In either form, it is typically nonscarring and non-depigmenting, UNLIKE "discoid" which tends to do both.

And here's the kicker: in SCLE, the odds of positive ANA may be 60-40, or 70-30, or something along those lines. In other words, a negative ANA is BY NO MEANS a bar to having this Dx. "Ro" antibodies are pretty common in this subset and may, some doctors think, actually "mask" positive ANA findings. (What a joke that result would be, huh???! A lupus that can trick even rheumies and dermies who know SLE & Discoid...)

Other symptoms: these can include the whole SLE range, but the very worst manifestations are NOT as common in SCLE (meaning CNS involvement and kidney involvement). Many cases are actually fairly mild. Since the possibilities remain, though, if you have SCLE you SHOULD be treated and monitored.

It was your comment about rash on the back that caught my eye, though. If you go to www.emedicine.com/DERM, then go to article 248, you'll see a whole raft of info about this subset. Also color pictures of the rash. I'm REALLY curious what you think after you read this article...

At time of Dx, my old medical history included encephalitis, pneumonia, frequent infections (sinus, UTI's), aberrant periods, periodic problems, migraines, "shin splints" (prob. really flat-out connective tissue problems), kidney stones, episodic monstrous fatigue, dizziness, erratic heartbeat, irritable bowel, irritable bladder, abnormal sed rate, and sciatica.

In the decade prior to Dx, add rashes; loads of lower back stiffness and pain; anemia; insomnia; and fatigue much more pronounced.

It took me 3 GP's, 3 rheumies, 5 dermies, and loads of tests to get any clues, let alone answers. No local doctors & specialists seem to recognize that darned rash, which was really prominent and came 4X yearly, minimally. The Manhattan rheumie and dermatopathologist each took one brief look & nodded. That's what a difference the right doctors can make. (Of course they did additional bloodwork and skin biopsies.)

I take Plaquenil (no ill side effects) and am very careful about sun protection. I have periods of blah's, but generally have managed much better in the last 4 years of treatment. I'm being watched also for APS and vasculitis.

In your shoes, I'd also hope for more clarity. Did he/she have a dermie do a biopsy that they didn't share with you?

Anyway, I send you my best wishes & hopes that you can get your doctor to talk turkey, as they say, with you. Hang in there & take good care.

Sincerely, Vee

Thanks for all the info. My rash is strange. I have suffered with eczema all my life. It appears in a circular form and is raised and scaley. It is red and usually begins by itching and ends up really dry and leaves a white mark. The rash on my back however, is really not like a rash, but the dr is calling it one. It is really blotchy and looks like mottled discoloration. I will check out the site and get back to you. I have not had a derm dr look at it. I also want to mention that I have Osteoarthritis of my lumbar spine that adds to my stiff back pain. The rest of the pain seems to be from my muscles.
Gracie

"shin splints" ... sciatica.>>>

I have had both of these since I was a teen. The first time my back 'went out', I was only 19, looking back, that is very strange. Then 6 yrs ago, it went out so bad, I litterally could barely walk, I was bed ridden for 3 days and my chiropractor had to come to my house. The pain was all the way to my toes and took months to recover from.

Dear lovemythreeguys2002,

Re: "growing pains", look at the SECOND post in the first topic of this forum (AngleicBrat's 2 posts about lupus criteria). I've seen this Dr. Graham Hughes article firsthand, and he makes pointed comments about "growing pains" in teenage years.

I'm not sure whether forum rules allow me to post the website, though. You could Google "lupus alternative criteria Dr. Graham Hughes" (or something like that).

Dr. Hughes is a HUGE name in lupus worldwide, I understand. His list contains lupus-suggestive symptoms OUTSIDE the hard & fast & very clinical "4 of 11" ACR criteria (which AngelicBrat lists in her FIRST post in that topic). Fascinating (but if you are American, our doctors don't seem attuned to such subtleties :eek: )

Take good care. Best wishes, from Vee

Re: "growing pains", look at the SECOND post in the first topic of this forum (AngleicBrat's 2 posts about lupus criteria). I've seen this Dr. Graham Hughes article firsthand, and he makes pointed comments about "growing pains" in teenage years.>>>>>>>

I didn't have any growing pains, I have read his criteria and don't fit any of it...thanks though :) My shin splints were just when I ran...I still get them...lol

Hi. That's also how my "shin splints" started: running & playing tennis, in my early teens. The pain lasted for many months (my longest spell ever). It persisted despite forced rest. My sed rate was off & I had a low-grade fever, too. (THOSE were prob. the really germane facts!?)

My current rheumie rolled his eyes when he saw the term "shin splints" on my medical history. He thinks I had connective tissue problems all along. FYI, I still get this pain frequently but have loads of arthritis elsewhere, too.

I wonder if "shin splints" is still even a valid Dx? I think it is. But I wonder how one would distinguish it from early signs of a connective tissue problem. Or, even if a dr. could, how they'd use that info? (Time to "Google"?)

In any event, this one facet would never be enough to define a much more encompassing disease or syndrome, fortunately. I match many of Dr. Hughes's criteria, by the way, not just this one.

Hang in there! All my best to you, from Vee