I would really appreciate your input. I am so frustrated because of all the tests and all the different ideas that the docs have. Iím not sure where to turn right now so Iím asking you if you think I need to press the rheumy for Lupus testing.
I am listing the criteria where I might fit and am hoping you can help to explain some of the questions for me:
Achy joints: Fybromyalgia and osteoarthritis. All of my major joints hurt, shoulders, neck, knees, hips and FEET. Sometimes there is swelling involved.
Fatigue: Sometimes it is so profound I fall asleep sitting up while working.
Skin rashes: Yes, sun sensitivity. I break out in a red raised rash on chest, upper arms when exposed to sun. Every evening I have a butterfly redness across my nose and on to my cheeks. It seems to go away during the day and is strong at night. Does this sound familiar? If so, should I take pictures of these rashes to my doc?
Raynaud- When I am cold my hands and feet turn purple, numb and painful. Should I take pictures to the doc? At first the toes (for example) turn a grayish color then a purple color. Sometimes it is only one toe. Itís weird.
I do have some brain lesions that were thought to be MS but it isnít so they are on the back shelf. I do have abnormal liver enzymes with no explanation and I have an ANA 1:160.
My doc said because my ANA was negative in the past that this positive ANA doesnít mean anything. Is that true?
I donít know about kidney because no one has taken a sample.
PLEASE let me know what you think!! Should I push the doc to test further or do you think I should be looking elsewhere? Iím really so tire of all this but I do want to know whatís wrong with me.
Thanks for your help, you're the best !
Dear Mindy, My rashes were on my upper arms & torso, never a malar facial rash. For the first 4 years, they were welt-like red raised bumps; then for the next 4 years, those same welts "morphed" into bright red circles that eventually faded without scarring or depigmenting. I had numerous biopsies. And trips to other specialists (gastroenterologists, urologists, etc.)
Bloodwork-wise, I was anemic persistently, but negative ANA.
I took myself to a teaching hospital rheumie finally. He "got it" in, oh, about 1 minute. I had the "SCLE" (subacute cutaneous) form of lupus. My rash was utterly characteristic of that form of lupus, plus I'd finally turned positive for anti-Ro. I also have cutaneous vasculitis (ankles mostly) but am negative for antiphospholipid syndrome. I was put on Plaquenil & use sun precautions.
Why did this take so long? Both the rheumie & the dermatopathologist told me that in the SCLE "subset", ANA is positive only about 70% of the time, which explained my negative ANA reading. (Also, in DLE, discoid lupus, it's positive only about 50% of the time, they both said.)
I think all along my suburban drs. were looking for full-blown SLE, but never considered SCLE, which is the intermediate type of lupus. It was first identified only in 1978. So maybe they'd never even heard of it?!?
The city drs. explained that SCLE symptoms can extend through the entire range of SLE symptoms, but that in SCLE, it is thought that the most serious SLE problems (kidney & CNS) occur less frequently; and that many cases remain mild, perhaps with lesser systemic problems (like anemia) but without major organ involvement.
They also explained that lupus rashes occasionally cross subsets, that I was eleigible also for malar rashes and discoid (scarring) lesions. Well, I did finally get one "discoid" but never a malar. i.e., that it's the totality of symptoms & tests that determine what kind of lupus you have, not just the rash (if any). I did score a "4" on the "4 of 11", which is common in SCLE, they said.
Re: what you wrote, I'd wonder a few things. (1) Has your dr. ordered the full range of autoantibody tests in addition to ANA? It makes sense for a dr. not to wait for ANA to turn positive, as it may never! (2) Have you had your rashes biopsied? (3) What do your rashes look like & act like? e.g., we read about malar rashes in *SLE*. In SCLE, there are two types of rashes: the circular one I had, or one that looks like psoriasis but isn't. DLE lesions tends to scar/depigment. etc. (4) Do your rashes appear after sun exposure?
I'm no doctor, just a patient like others here; but what you wrote certainly sounds familiar to me. And I certainly can understand your concern & frustration. I hope you post back & that others chip in, too. Sincerely, Vee
P.S. Did you you read the sticky posts at the front of the Board? The one about test results can lead you to a whole raft of lupus info.
Thank you so much for responding! Yes, I did look at the link you suggested and found it very helpful. I think about four years ago I had a number of the tests completed but they were negative. Receintly, I don't think any of the tests have been done except the ANA which is 1:160 homogenous. For about the last year my creatinine has been low (bloodwork) and carbon dioxide is high. I don't know what the gran% means but there is an "R" beside it- Lymph and MCH, ALT, AST high.
My rash across my face is similar to the malar but much more subtle. It is almosy like blushing except it is faint bumps and extends across my nose (which a blush doesn't). It shows up mostly at night when I'm really tired. It is pretty red.
The rash from the sun is like little red bumps. It is more prominent than the rash on my face and it is widespread in mostly sun exposed areas. My chest and upper torso, upper arms and back. There have been times that my lower legs will break out but that is very infrequent.
I am going to FL to visit my daughter this week. I'll take a picture of it!! It's like clockwork so I know it will be there.
Again, thank you so much for your help! I truly appreciate it. Knowledge is what I need right now. If I'm looking in the wrong direction I sure want to know. If I need to give my doc a boost then I'll do that too. I am really tired of the pain, limping, bla bla and not knowing why. You've got to know the enemy in order to fight them :-)
My understanding of photosensitivity is that one can react to sunlight not only with a rash, but with flare-type symptoms (pain, fatigue, headaches, etc.) It was the "other stuff", not the rashes, that made me conclude that I had something really going on. I felt lousy in vrs. ways as the rash was on the rise, then normal-ish as it dissipated. But my "normal" kept slipping, too.
In tropical sun I also got a widespread lacelike mottling, probably "livedo reticularis", a circulatory abnormality. I get cold hands & feet all the time, but I don't go the red, white or blue that is seen in Raynaud's. (My mom went a very blue hue, so I've seen that firsthand.)
Your *non-facial* rashes might be a valuable source of info, if you pursue them. Dermies are probably more apt to biopsy rashes that aren't on your face, for cosmetic reasons. I've read that under the microscope & with chemical tests, lupus rashses look alike (meaning SLE & DLE & SCLE, etc. look alike)---but at least they look like some kind of lupus, so that would be a real head start.
Rashes are very tricky & there are a whole lot of them out there. And I'd bet there are other *non-lupus* sun-sensitive rashes, incl. drug reactions that sun may enhance or that may even cause another form of lupus called "drug-induced LE" (DILE). But it's when you include mention of ANA, joint pain, fatigue, etc. that one starts to wonder...
I've seen pics of the two different forms of SCLE rashes, too.
Anyway, have fun in Palm Beach! Are you going to avoid the sun, or see what it does to you? Alas, post-Dx, sun is a no-no; hats with brims, block, long sleeves & leggings, etc. are typically recommended.
We'll watch for your updates, OK? Bye for now, Mindy. from Vee