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    Old 02-21-2005, 04:04 AM   #1
    fayefvt
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    Question Lupus or not?

    Hi folks, new here and wondering what to do. Hope y'all can give some advice. I have been suffering with skin allergies for a long time now. Started off becoming allergic to the sunscreens I used till gradually I couldn't use any - cause a burning itchy rash. Developed Poly Morphic Light Erruption. Have generally photosensitive skin. Developed eczema and psoriasis (cured by homeopathic doc), always have hives. They drive me mad - always itching somewhere. Little red itchy blotches just pop up out of nowhere, they're hot and itchy and look like nettle rash. I have demographia so that if I scratch my skin at all, it comes up in something that looks like nettle rash again. I can write my name on my skin - it's my party trick! Recently my eyes have been getting very itchy, always puffy, itchy eyelids. Woke up recently looking hideous - very puffy eyes, red inflamed itchy rash on eyelids and in two bright red stripes from the outer corner of my eyes, leading down round my eyes, across my cheeks. Doc said it was allergic conjunctivitis and prescribed an antihistamine - it helped but as soon as I stopped taking it, the symptoms gradually came back. I just feel like my skin is attacking me. I also have digestive upset, premenstrual problems and, incidentally, this might sound crazy, but all the skin symptoms seem much worse when my period's coming? Does anyone think it's possible that I have the form of lupus that affects the skin? I'm struggling to get answers from anyone, no-one seems to want to bother to find out why I'm always getting hives etc. How do you go about suggesting to your Dr. that you might have something, rather than letting him diagnose? My skin is driving me crazy and I'm desperate for a solution! Oh yeah, get thrush every single f*&^%$g month! It was absolute agony last month! Oh, and I get a sore tongue with mouth ulcers and mouth ulcers inside my cheeks too. It seems that Docs simply don't understand how intensely draining constant rashes and skin problems actually are. I can't even try on clothes in a shop without getting the dermographia, it's hard to look pretty when you're constantly scratching somewhere and endless bouts of thrush don't do much for your love life! HELP ME! Somebody!

    Last edited by fayefvt; 02-21-2005 at 04:43 AM.

     
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    Old 02-21-2005, 06:04 AM   #2
    fayefvt
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    Re: Lupus or not?

    well, you're responding to each other but not able to help with my question! It was useful to read your discussion board though.

    Good health to you all.

     
    Old 02-21-2005, 06:43 AM   #3
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    Re: Lupus or not?

    Dear fayefvt,

    Greetings. I just saw your post. I can sympathize, having had years of various itchy and non-itchy skin problems before getting a rash finally determined, after years of doctoring, to be lupus-specific. Call me cynical but, in my experience, skin problems are very hard to track down.

    One thought on the reaction you describe to a sunscreen---was it the sunscreen that did it, or was it the SUN? I went for years slowly becoming more photosensitive but not realizing it. Even when I first got a lupus-specific rash, I didn't associate it with sun as it bloomed fully only months later, in January, months after summer sun exposure.

    I was told much later that it can take a very long time for sufficient immune "junk" to build up between the dermal & epidermal layers to form a visible rash. The "junk" is there, but you don't necessarily suspect that until a rash erupts. Yes, I'd started to get headaches and the "shakes" after sun, but those didn't "register", alas. Only in the final year prior to Dx did I see a rash form really quickly.

    Anyway, about diagnosing rashes: Have you had deep punch biopsies done? And by someone specializing in autoimmunes? As soon as I got my first big rash, I went to a dermie. Alas, I went to one who did "general" work and a lot of cosmetic procedures. While she had a huge rep, she wasn't the right dermie for me. She Dx'ed an allergic reaction & prescribed useless (and very expensive!) steroid creams.

    Five or six biopsies later, I had enough other symptoms and had been told by a radiologist doing a kidney function test (!) that lupus was a candidate. I waited until the rash reappeared, then demanded the name of a teaching hospital rheumie. He did his thing, then sent me to a teaching hospital dermatopathologist ( = a dermie who does his own labwork). Bingo. He did bloodwork and another deep skin punch, on which he did a series of immunofluorescent tests.

    Turns out I had (have!) SCLE, which is a "subset" of SLE in which *Ro* antibodies are found in about 70% of patients (the other 30% remaining sero-negative). No one in the suburbs recognized the rash as a lupus rash, because they were looking for full SYSTEMIC lupus, not for a subset like "subacute cutaneous LE" or "discoid LE".

    I'm surely no doctor, but I've done enough web browsing to see pics of PMLE. I've read that it's hard to Dx and can be confused with other skin conditions. For example, in the SCLE subset, two types of rashes are seen. One is an annular, nondepigmenting and nonscarring rash that favors the torso & upper arms [I had that one]. But the OTHER is a psoriaform papulosquamous rash that can to the naked eye look like PMLE, among other things...

    If you browse on "SCLE" and look for "straight medical" websites, perhaps you can find this type of info. (I'd post the actual links, but we are not permitted under Board rules...)

    What tests have you had done? Do you see a sun correlation? And how do you feel overall---any other symptoms, like fatigue, arthritis, etc.? FYI, I had my rash for eight years before I got answers, by which point I felt pretty punk overall, so I can really understand that you want answers NOW.

    Hope this helps some & that you keep posting. Meanwhile, best wishes to you, from Vee (who formerly looked like the Tatooed Lady of circus fame)

     
    Old 02-21-2005, 09:58 AM   #4
    Kathie T.
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    Re: Lupus or not?

    Ok I have all if the worst skin stuff. I looked like a burn victim at points in my life, and once was debilitated for two weeks because of eczema. My derm loved me because he said I was an interesting case. My derm perscribed a tanning bed to help the rashes and when I did it all hell broke loose. I had a really awful (spare the details) rash over my whole body, except the skin covered by the bathing suit. So huh that should of been my first indication of a sun issue. The wonderful eye thing came after I moved to a sunny climate. I have really bad eczema not only on my eyelid but on the fold inside my eye. At times I find myself violently scratching my eyeball! I scratch my eyes all the time and am getting nervous now as to the damage I am doing. But I can't help it, they itch so damn bad. I tried several different eye drops, but to no avial. So now this is what I am doing and so far it is working. First I wear sun glasses--even at dusk and even in the rain. Then a really big hat when I have to be outside, and I cover my body. (The other day I walked in the sun in capri's with sandles, and I had a rash on the skin that was exposed! A rash in the outline of sandles-beautiful!

    But the eye thing: So I have a lot of those eye covers from airplane trips. So each night I take one and put it on my eye, but I do that after I fold a peice of tissue over my eye. So it's a folded tissue with the airplane eye cover thing on top-holdig in the tissue. I find that the tiny bit of pressure from the tissue and eye thing on the eye, relieves the itching, and I don't scratch the eyes anymore in my sleep. I also sleep with socks on my hand so I won't scratch in my sleep. And my hair pulled back so it won't rub against my eyes or face causing me to get itchy. Sexy huh?!!!!

    I use protopic cream for my face which is the cream from hell because it causes so much itching after putting it on, but I am nervous to use topical steroids on my face area, and protopic works after the itching subsides. I do use a strong topical steroid all over my body, but I mix it with Eucerin. So far this is working, and as my derm said "I love you people with eczema, you always seem to find what works for you!"

    But now that I am being looked at for Lupus, my derm says parts of my rash can be SCLE or SLE. Keep track of what you got, and take pictures for your doc if they go away. A tip I learned the hard way. Good luck! Kathie

    Anyways the itching can be the worst. Last night I had it so bad, I really toought I was going to go into shock from it. Suffice to say, got not sleep.

     
    Old 02-21-2005, 01:28 PM   #5
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    Re: Lupus or not?

    I have SLE and have the eye problem. I believe the thing that took me back the most was they way he discribed it. The skin under my eye lids that touches my eye is not smooth the way it should be, instead it is the texture of pig skin. Kid you not that is what he said.

    Anyway it rubbs my eye and irratates it. He thinks it could be Lupus related but not sure. I take drops only when it bothers me to the point I can't stand it, but I try my darnest to not scratch my eyes or my face. I have eczema also, on my arms, legs and now it is showing up on my face this winter. Which is fustrating. I always thought that was one part of my disease I had control over, guess not.

    I also wake up with my eye swollen shut in the morning and have to run hot water over them to be able to open them all the way. It is funny, I have had lupus long enough to no really notice the changes I have made in my life to accomadate it. Reading these postings sometimes makes me aware, oh yeah I do things differently than the normal person.

     
    Old 02-22-2005, 10:26 AM   #6
    fayefvt
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    Re: Lupus or not?

    Thanks for these responses guys. It's nice to know that I'm not the only person who is driven mad by itching - don't think people who don't have constant itching really understand...people keep telling me not to scratch my itches but we all know that's a lot easier said than done! At work whenever I work on the delivery the boxes cause havoc with my arms because every time I brush my arm on the box I get the dermatographic reaction, so I end up covered in welts all up my arms! People look at me like I'm weird. My eyes are driving me crazy - it's extremely difficult to scratch your eyes, your eyelids and so on. While I have found ways to relieve itching (sometimes by pressing my nail right into the spot and so on) you can't do that in your eyes! The puffiness I get when I wake up is not pretty and the rash that I had (that doc said was allergic conjunctivitis) looked just like the malar rash (checked out a pic!). Course it's gone - like you say, a camera is necessary!

    As regards actual tests - I've never been direct enough to ask for them (I hate Doctors!) and so I've had very little. You're right with the sun lotions - I could wear a sun lotion as long as it was dark! As soon as I stepped into light and warmthh (be it artificial or natural) I'd come out in a raging, burning, itching rash. Different though from the PMLE - that's an ugly one, hangs around a while!

    It's just so good to talk to people who understand the pain and distress of constant itching! No-one really knows till they've had it. The agony of a burning eczema rash, the distressing ugliness of psoraisis as it spreads across your face, the constant expense of buying a skin product and then having to throw it out because of allergies etc. Drying my skin after a bath leaves me covered in what looks like nettle rash (dematographic reaction again).

    I don't have the other 'lupus' symptoms - joint pain and so on (thank God, I couldn't cope!)...all my problems are skin related in some way. My two biggest problems just now are the itching - whether it's demographia, urticaria, PMLE or thrush - I itch! I just want someone to fix it! Every time I go to a Doc with a skin thing, they tell me I'm allergic to something but never go as far as suggesting they'll help me find out what it is! I must conquer my fear of docs and just ask them outright to help me. After my PMLE eruption I just went straight to a Doc and asked to be referred to a Dermatologist, and they offered to send me off to a sun clinic to determine precisely what causes my reaction and to make a cream just for my skin, but I had too much work on and would have had to take a rain check on my degree at the time, so I declined! Time to get brave perhaps?!

     
    Old 02-23-2005, 06:53 AM   #7
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    Re: Lupus or not?

    Dear fayefvt,

    I'm relatively brave and sensed knew right away that I needed biopsy help from a dermie to track down my rashes.

    Yet I STILL didn't make progress quickly. That's how tough rashes can be...

    I honestly don't think very many rashes can be figured out for sure without biopsy analysis. But as you might suspect, I'm a "straight medical" type---at least personally, I'd exhaust the straight-medical avenues first where rashes are concerned.

    But you're the one who has to determine what steps should be next. I can tell you this much: biopsies do not hurt much. They numb the skin with a local anesthetic first, then do a few stitches if required. I considered this nothing, given my long, varied, frustrating and episodically acute medical history. I was actually GLAD in a weird way that my rashes might help figure things out. "Glad" is not quite the right word here... Maybe "hopeful"?

    I didn't get along so well either with many doctors over many years; but now I do admire, respect and trust the rheumie whom I see regularly. Ditto with the dermatopathologist to whom this rheumie referred me and whom I saw several times right before the Dx came down. These are truly "firsts" for me.

    ... so if this helps you any to mull things over, good! But, if not, sorry! I hope you keep firing out questions, so that someone can perhaps say something of value that strikes a chord with you. Sympathetically, Vee

     
    Old 02-23-2005, 01:41 PM   #8
    Kathie T.
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    Re: Lupus or not?

    Ohhhh you sound just like me. My great skin probs came about half a year after I got mono when I was in my early 20's. I do the pressing the nail thing really hard on my skin I don't mean to, but it is so awful. The itching can be so unbeleivable. I sometimes think that I stop breathing from it and want to throw up. It's so hard to describe but absouletly intense. And the rash I get from being out in the sun is also different then the other one that hangs around, but both are itchhhhyyyy. Like today I walked with a three quarters length skirt and now I have this bad bad rash over the bottom of my legs. Please please keep me posted, you are me totally and I would like to know what happens with you. I'll keep you posted too. If another derm says eczema I will scream. What is eczema anyways? My derm said it's another way of saying "I have no clue why your skin is one big rash." I just wish I had the strnegth to stop the cortizone so I can show my derm the true nature of this beast.

     
    Old 02-25-2005, 06:10 AM   #9
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    Re: Lupus or not?

    Okay.............I was diagnosed with Autoimmune hemolytic anemia in August 2004. I was then sent to a Rheum. who without any testing said I had Lupus. He started me on Methotrexate. I was already taking prednisone. He ordered all the typical blood work looking for Lupus. All of it came back negative for Lupus. My ANA was negative. Could I still have Lupus? I'm so frustrated..........You see, I've had this horrible sore in the left side of my nose since August. It is so bad. I've told the Rheum. I've told the hematologist....I've told the primary care doc.....I've even told the ENT. I've been given antibiotic cremes.........that did not work and the last time I went in to see the Hematologist I also had a sore in the right nostril and it was beginning to come outside my nose. He prescribed Valtrex. It cleared up the outside of the nose and the right side but the left side is still there and if anything is worse. There are so many people on here that have so many horrible problems that I feel bad for complaining about a sore in my nose but it really hurts and is so aggravating. I haven't seen the Rheum. since Nov. but I go back in March. My other symptoms are extreme fatigue, low grade fevers, joint swelling and hurting especially in my hands and knees, hair loss, headaches, itching, dry mouth and eyes(which I'm taking medication for Sjogren's) and back pain(I've also been diagnosed with Ankylosing Spondylitus). I'm so confused and so tired of this sore in my nose. Has anybody ever had sores in your nose with Lupus? Thanks

     
    Old 02-25-2005, 08:28 AM   #10
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    Re: Lupus or not?

    Dear Fayefvt,

    I just realized I went on & on but didn't point out the very valuable "sticky post" at the beginning of the board. It lists the diagnostic criteria for *systemic* lupus. Once you read THAT, you can see how tricky Dx'ing it can be, as you require "4 of 11" in your medical history, not necessarily all at once.

    The lupus subsets are just that: smaller groups within the systemic group, meaning you do NOT have to fulfill "4 of 11" to be Dx'ed with DLE (discoid LE) or SCLE (subacute cutaneous LE).

    But, another oddity: rashes can cross subsets. Someone with SLE typically would get, if any rash, the "malar" facial rash but a small percentage *might* get discoid or subacute rashes. Similarly, in SCLE, a few et the other rashes. This is another way of saying that the rash doesn't seem to determine the subset into which you fall---it's more like the body of symptoms & findings, with the "worst" being the ones that define your set or subset.

    Clear as mud, right? So, how you doing, anyway?!? I hope your skin problems can shed light & can be controlled, too---and quickly! My best, Vee

     
    Old 02-25-2005, 08:31 AM   #11
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    Re: Lupus or not?

    Dear but4grace,

    I just started a new thread for your nasal sore issue. (Vee)

     
    Old 03-02-2005, 12:20 PM   #12
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    Re: Lupus or not?

    Hi Guys,

    Good to hear from you all - it's such a nice community, so good to speak to people who actually understand this! When I'm at work and I come out in a big dermographic rash I don't even bother to try to explain properly to people what it is because even when I do, they just look at me like I'm neurotic. They think I'm plain weird!!

    As regards what I've had done since I talked last, nothing! I've been up to my eyeballs - I do post graduate research, teach twice a week and work 20 hours a week in a shop! I also have a genuine block on going to see Drs because I can't be bothered with them! I hate having to argue and demand to be treated - it's what they're there to do, I shouldn't have to demand things from them! But this is the nature of the beast...it's the NHS, they have 10 minutes per patient but ideally want you diagnosed and out of there with a prescription ASAP. I'm not convinced about my last diagnosis - it was apparently allergic conjunctivitis. My eyes were swollen, inside and outside of the eyes were itchy and in an inflamed rash, and underneath my eyes there was a rash that looked like the 'malar' rash (checked out the sticky posts etc!). Although I've taken the antihistamines and the eye drops, the problem hasn't completely gone away - it's just died down a bit. My eyelids flared a bit the other day and my eyes are often burning and watering. I'd guess I'm allergic to something (praying it's not my mascara as I love it!) but I don't know what. I suppose I'll just have to go and ask them to test my skin.

    The thrush is ongoing - I try to keep it at bay with Nelson's Candida tablets but it's not solving the problem. As regards hydrocortisone and steroid creams - I gave up on those. They don't really do much for me and besides, the last time I had a massive, agonisingly itchy rash on my inner thigh and I rubbed a hydrocortisone cream into it, it just burned like mad. The pain of the burning after the cream was worse than the itching - and that's saying something!!!!!

    I guess I have to bite the bullet and make that appointment. I need to find out why I always have hives, thrush, watery, sore eyes, and dermographia! I MUST DO IT! I MUST DO IT!! It will be my mantra! Do you know the thing about rashes though - I never have one when I go to the Dr to talk about one!!! They all mysteriously calm down making me look like a hypochondriac maniac!

    Right, will make the appointment tomorrow. I will let you know how I get on but it usually takes months to get a referral to a dermatologist. If you don't hear from me again, you all have permission to track me down a make me deal with this! The more rashes I get, the more I simply incorporate them into my life and try to deal with them in my own way....avoidance tactics!

     
    Old 03-04-2005, 02:30 PM   #13
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    Re: Lupus or not?

    Dear fayefvt,

    So... have you DONE IT yet? I was away for a week, just got back & saw your commitment, then that little bit of backpedalling...

    I shouldn't tease, because I went through many dormant months during the long years prior to getting a Dx. I hope this finds you on the road to answers. Sincerely, Vee

     
    Old 03-07-2005, 12:55 AM   #14
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    Re: Lupus or not?

    Hi Veej,

    Yeah - I phoned the surgery but they didn't have any appointments for this week! So I haven't got one yet. I'm going to try to book an advance one, I've decided. I reckon this is the best idea because I can estimate when the thrush will be at its worst and if that's bad, my other skin rashes are usually bad. I was one big rash last night - itching like crazy, my skin hot and burning. This would be ideal if I can recreate that for my appointment!!!

    I am also going to a Homeopath this afternoon, you might have heard of Jan de Vries. I'm going to see if he can prescribe anything natural for me. I've been to see him before and he did actually cure (completely) my psoraisis and eczema, so we'll see what he can do this time round!

    I will keep you updated and I promise I wont back out!

     
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