I have been going through the diagnosis stage of Lupus for a year in a half now. My Rheumey says it can take up to 18 years to diagnose he doesn't like giving a diagnosis without positive ANA... However, I think I have close to every clinical symptom. I also have many symptoms of fibromyalgia (sp?) I currently am getting a weird rash all over my body...there has been no method to the madness on why it comes and goes. It is not raised, but it is red dots (almost looks like measels) all over. Starts on the arms, goes up the neck on my face (where it will raise and looks like welts). Does anyone else get this rash?
I get an all over body thing. Now it's underneath my eye lids (which my eye doctor was amazed about). Mine isn't little red dots (though I'll get a scarring blister welty thing). Mine is more typical eczema all over (even on the palms of my hands). I control it with topical steroids so it is doing really well (but the steroids are causing really thin skin and lots of spider veins). Usually the sun has a lot to do with rashes. Do you find you get it after being in the sun? My derm prescribed me to tan when he thought it was eczema. Suffice to say I landed in the ER because the rash got so bad (except where my swim suit was). ANd it hurt and itched sooo bad. That pretty much indicated it was a sun thing. Omega three helps a lot with skin stuff. I also find that when I mix my steroid cream with regular lotion I get better use out of the medicine and I don't have to use so much. I slop it all over my body which my derm isn't so happy about.
By the way, I don't have the butterfly rashA rash on the face, but all over the face which my doc says is eczema. ON the face I use Ellidel-non steroid. Good luck! Keep posted!
Dear lar2much, I had 4+ years of a rash that looked like welts, mostly on upper arms and back. Then for 4 more years, the welts would return, then expand into almost perfect circles. The circles were about 2" in diameter, bright red rim with clear center, non-itchy. Then they'd expand further & fade without scarring.
I'd had intermittent health problems since childhood. I felt awful each time the rash was coming on: joint pain & swelling, fatigue, migraines, GI upsets, irritable bladder, neuro-like tingling & dropping things, fever, anemia, etc. In the suburbs where I live, I saw about 5 or so dermies, urologist, gastroenterologist, neurologist, neurologist and finally a rheumatologist.
I finally took myself to a teaching hospital rheumie in Manhattan. What the rash was (after full medical history, further bloodwork & urine tests, & a final skin biopsy): subacute cutaneous lupus erythematosus, abbreviated SCLE. I've been on Plaquenil ever since & avoid sun & doing much better.
SCLE, I learned, is considered the intermediate form of lupus, first identifed as a form of lupus, but with its own peculiarities, in 1978. While its symptoms can extend through the entire SLE range, the worst (kidney & CNS) are thought to occur less frequently. About 50% of cases do NOT have major organ involvement but can still be "systemic" (joints, anemia, etc. in addition to rashes). Many are extremely photosensitive. Many score at least a "4" on the "4 of 11" criteria. About 70% of people with SCLE have a positive ANA, but 30% do not; ditto with anti-Ro. FYI, my ANA never turned positive but anti-Ro autoantibody did; and I'm negative for antiphoslipid ("sticky blood") syndrome.
I had the "annular" (circular) form of SCLE rash. There is also a psoriasiform type (looks like psoriasis but isn't).
The "sticky post" about test results lists a website that has info on this. Look for the articles about skin in lupus.
My local drs. had clearly never heard of this---and I live a princely 24 miles from midtown Manhattan. They kept waiting for a malar rash, positive ANA, and anti-ds-DNA. On the other hand, my Manhattan rheumie was STUNNED at their stupidity & made no bones about it (made me laugh).
I really recommend you seeing a teaching hospital rheumie, and/or a dermatopathologist (a dermie who does his own labwork). GOOD LUCK! Give a holler with questions, etc. anytime you like, OK? Best wishes, Vee
Thank you all so much for the info!!! I really need help and appreciate anything you all can offer. I have so many "odd" symptoms...There is only one rheumie in my area. Went to another one in another state and since she couldn't follow up...she wouldn't put lupus... I do have a malar rash, but it is not blistery or anything, resembles rosasia (sp). Digestive and bowel problems from one end to the other (no pun intended)ha. On fiber, Omega3, digestive enzymes and I get colonics done every other week. Still to no avail and help with the dige****ve/bowel problems. Dr. say's it's because body is to busy to fight the colon??? Have SEVERE periphial nueropathy,livedo riticularis, no pedial palses in feet (loss of blood flow) on viagra for the blood flow and I have my arms and legs shut down once a week through nerve blocks to get blood back to my hands and feet. Feet are in EXTREME pain regardless if I sit or stand. Out of my mind tired. Had 4 miscarriages 3 in 1st trimester, 1 in 2nd, finally through infertility I have 2 gorgeous kids (diabetic and insulin dep for both) , I have headaches, have lost over 45% of my hearing in each ear, reactive hypoglycemic, short term memory loss, pain in middle chest when I breath. No fevers, no positive anything on blood other than my c3 and c4 go up and down and I don't know what that means...Dr said he doesn't either, but curious. Bladder or kidney problems not sure which...however, one or the other isn't working right, almost uncontrolable bladder type symptoms, but don't ever need to go when it happens...If it keeps going I'll be in depends before 35! Now this weird rash. Never blistery or anything...If we could post pictures I would..just to see if any of you have seen it before. Anyhow, also on a mass of pain meds for my feet, which I can't take like I should (single Mom). On Prednizone, "doubled during what I feel is a flare." Also on DHEA 200mg. Have EXTREME weight gain... from a 5 to a 10/12 in less than a year and still going. Lossing hair, but not in large clumps to cause bald spots, but not your normal hair loss from brushing and what have you. I can actually run my fingers through my head and my palm will be full of hair. Dr said had to cause bald spots?? I'm at a loss. I'm sure I've missed a few things in my nightmare of medical problems, but does any of this sound even close to being familiar to SLE or hopefully not, but comparable to any of you? Pain management Dr states SLE and Fibroymyalgia? Right now I have the diagnosis of Undifferentiated Connective Tissue Disorder? Not sure what that means!!
Aha! So you do have a Dx = UCTD. It stands for "undifferentiated connective tissue disease". It's applied to people who have some symptoms of an autoimmune/rheumatic disorder, BUT not any distinct thing...yet.
I checked my Dr. Daniel Wallace lupus hardcover, where UCTD and MCTD (mixed connective tissue disease) are discussed as "close relatives" to lupus. UCTD is characterized by rashes, swollen joints, fatigue, fevers, swollen glands, Raynaud's, pleurisy, high sed rates & positive ANA. i.e., not quite lupus and less severe. Of the people who are DX'ed with it, some get better; some stay Dx'ed with it (don't progress); and some get Dx'ed with a more specific disease (lupus, scleroderma, rheumatoid arthritis, primary Raynaud's, polymyositis, and MCTD).
But it's what you write about circulatory problems & miscarriages that really caught my attention. Have you heard of *antiphospholipid syndrome*? (also called Hughes's syndrome, or sticky blood syndrome, or anticardiolipin antibody). There's a "sticky post" on this that I hope you read right now! Then I hope you post back on this aspect, OK?
FYI, I also had irritable bowel problems for decades. Horrible. I was thrown into hospital several times, I was that messed up, with convulsive spasms from tip to stern (so to speak ). I had every test multiple times, with no Crohn's or ulcerative colitis detected. And 20 years later, my bladder started up, too: spasms, irritability, wild frequency. I was evaluated for several things & the urologist even toyed with Interstitial Cystitis. Interesting: both the bladder & bowel problems cleared up almost 100% when I started Plaquenil, after all those years.
I hope others chip in soon with more info & comments. While we're just patients, I know some people here have had a lot of what you list.
Bye for now, from Vee (P.S. You can read up more using the links above. Click the tab that says "Resources", then go into "MedLine Plus", then go into lupus. Also, look at the sticky post at the front of the Board on test results. There's a site mentioned that has a HUGE amount of info on lupus, test results, skin, antiphospholipid, etc. In other words, all the things you just mentioned.)
Right I do have a dx...pain management Dr call's it MCTD...Rhuemie calls it UCTD...see pain mngmt more than Rhuemie. Yes, I have heard of the Sticky blood...in fact the first Rhuemie that saw me said Lupus with secondary of anticardiolipin. However, she stated that it was her initial dx, but since she will not be following me as a patient...she would not DX?? So here I am small city/state with 1 Rhuemie.... no other dx because he requires a positive ANA. Do you VEEJ know what this c3, c4 thing is? Cardiologist said dead ringer for Lupus...I'm just stuck...I'm not getting any better even on all the meds...I have more and more things that creep up medically. I am so frusterated. I bought the Dr Wallace book...but I'm in such a middle ground with an array of problems...there really isn't a pin point. Every Dr I see has a different opinion...Most are saying Lupus...Some are saying a mixture of Lupus and Fibromyalgia with secondary of the anticardiolipin....But never a clear answer...Again, I appreciate anything any of you can offer to me.
Right I do have a dx...pain management Dr call's it MCTD...Rhuemie calls it UCTD...see pain mngmt more than Rhuemie. Yes, I have heard of the Sticky blood...in fact the first Rhuemie that saw me said Lupus with secondary of anticardiolipin. However, she stated that it was her initial dx, but since she will not be following me as a patient...she would not DX?? So here I am small city/state with 1 Rhuemie.... no other dx because he requires a positive ANA. Do you VEEJ know what this c3, c4 thing is? Cardiologist said dead ringer for Lupus...I'm just stuck...I'm not getting any better even on all the meds...I have more and more things that creep up medically. I can't even fight a common cold off...I think I've had this one since Thanksgiving...got antibiotics...still hasn't stopped it. I am so frusterated. I bought the Dr Wallace book...but I'm in such a middle ground with an array of problems...there really isn't a pin point. Every Dr I see has a different opinion...Most are saying Lupus...Some are saying a mixture of Lupus and Fibromyalgia with secondary of the anticardiolipin....But never a clear dx...Again, I appreciate anything any of you can offer to me.