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Thread: Did anyone's lupus start with urticaria?

  1. #11
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    I've been on plaquenil for almost 3 months. I'm hoping the joints and skin do benefit further from it. Could do with less fatigue also, but I'll take sleeping half of every weekend instead of the whole weekend, and not feeling like I need to crawl into bed at 7 every evening for the moment! Was up til 10.30 last night and paid for it today...and am only up this late tonight because I know I can sleep all day tomorrow!

    I do have a 'flush' on my cheeks that the dermy said may be a very faint malar rash, but she didn't examine it closely. It looks like very tiny blood vessels/blood spots on a background of pink. She described it as 'rosy cheeks' in my notes. It does make me look very 'healthy'...I never wear makeup anyway as it irritates my skin, but I certainly don't need blusher! I have photos of my skin that at the time of my last derm appointment I had forgotten I'd taken, so will show those to the dermy next week...in one of those, I'm turned half-away from the camera to show my back, but you can see my cheek is scarlet. I hear you about the mosquito bites, too...I got bitten all over on holiday a couple of years ago and they swelled into enormous blisters. I get bitten to pieces and they take months to heal. I also have to use 'sensitive' skin stuff, have to use baby washing powder and hypoallergenic skin products.

    This is what puzzles me about the bloods: I have speckled positive ANA (don't know what titre), and positive dsDNA and Ro. I have read in lots of reputable places that dsDNA is specific for SLE, but also in lots of other reputable places that it isn't. It appears the higher the titre the more specific it is, and mine isn't sky-high but it's not so weak as to be borderline either - it's well above the lab reference range cut-off. I know you can get dsDNA with autoimmune hepatitis, but my liver function is perfect and I have no signs of any type of hepatitis. I think it surely can't be a coincidence that I have serological markers for lupus, plus clinical signs and symptoms of lupus, and yet no firm diagnosis. How can they not be related? Is it like this for everyone, or is it only like this if you have no biopsy-proven lupus rash or nephritis? I will not let them biopsy my facial 'flush', the biopsies I have had previously have formed keloids and I will not have that on my face. Again, as I say, I'm not 'trying to get diagnosed with lupus', I just want to know the reason for all this uncertainty, when it seems pretty straightforward to me! I don't know what they need to see to rule it in or out?

  2. #12
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    Firefly,

    I am yet to be completely diagnosed. My only definitive diagnosis, as of today, is Hashimoto's disease. I have suffered with dermagraphism since I was 20 years old. It began while I was sunbathing by my apartment pool. I now believe this was the beginning of my autoimmune problems (triggered by sun...hmmm). That being said, I have not gotten much relief from the dermagraphism until recently when I was prescribed Neurontin for peripheral neuropathy. I haven't been bothered with it since. I was told way back when (I'm 52 now), that it was allergy related, so I haven't ever been back to a dermatologist. I just used antihistamines when it was really bad, and they did help a little. It was intermittent, flaring mainly when I was stressed or really tired. Through the years, the original diagnosis didn't make sense to me given the triggers, but every time I mentioned it to a doctor, they agreed with the original dermatologist. I am quickly learning that it doesn't ever pay to tell a new doctor what a former doctor has concluded. I now present my symptoms as if that doctor is the first and only doctor I have seen. Once I began doing this, I finally was able to get some much needed attention. I'm still working on an accurate diagnosis, but I'm a lot closer now than I was when I first got really sick four years ago. I have seizures, extreme joint pain, peripheral neuropathy, etc., but my bloodwork doesn't support anything clear and specific. Right now I take Lodine, Neurontin, my bloodpressure med, and my two thyroid medications. My doctor is treating symptoms only rather than the immune problem. I'm hoping for something else to show in my bloodwork at my next appointment. I know that sounds bad...it's not like I WANT to be sick; I just fear the damage and progression that continues to occur. Wow! This was way more than you asked for when you presented your original post. Sorry. I get off on long tangents sometimes. LOL! Happy New Year, and good luck to you!

  3. #13
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    Hi Firefly,

    I have a story which is very similar to yours. I have a number of skin problems, but my first, and most pervasive, issue is chronic uticaria. I've had hives consistently since the fall of 2010. Though I have not been diagnosed with SLE I am being treated for it. My rheumy says it is still evolving but everything points to it. The plaquenil helps with many of the other symptoms (mouth sores, hair loss, joint pain) and I take 20mg reactine for the hives and adalat for raynaud's. My skin is "alive" with a number if different problems which i understand is common in patients with Lupus.

    I can't tell you whether or not you have SLE or another autoimmune disease, but I'll share with you what my dermatologist told me. He said there is a great big grocery list of AI symptoms. I suffer from a number of these symptoms, as do you and all the others in the group. We all suffer from these symptoms - they are the reality. The name that has been associated with the various combinations of symptoms is so the medical profession can treat them more efficiently. But I have MY unique disease and you have yours. The important thing is that you get treatment for your symptoms.

    Don't get me wrong. I understand how difficult it is to be in Rx limbo-land but luckily you've come to a group that is welcoming and helpful regardless.

    Take care and Happy New Year!

  4. #14
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    Hey Firefly. What originally sent me to a rheumatologist was urticaria-like skin lesions. My dermatologist was convinced it would be hypocomplementemic urticarial vasculitis (speaking of, have you had your complement levels checked?), but after an extensive work-up, we ruled that out. But you might ask about that.

    On biopsy, the lesions showed "a marked vacuolar interface change" aka "interface dermatitis" which are findings in SLE, dermatomyositis, and polymorphous light eruption ("light allergy" which I didn't have because my lesions are mostly on my lower abdomen, thighs, and near my underarms). But my lesions don't look like rashes common to any of those diseases.

    At this point, I have a "diagnosis" of undifferentiated connective tissue disease, and I am on Plaquenil (and amitriptyline for nerve pain). I will tell you, Plaquenil has controlled my skin lesions VERY well. I've gone from dozens of lesions at any given time to maybe one little spot every couple of months. I stopped Plaquenil briefly on doctor's orders, and the rash came back, so Plaquenil is definitely helping me.

    I know it's hard not to know exactly what you have, but after almost two years of dealing with a mysterious autoimmune disease, I've come to a certain peace with having an "undifferentiated" disease (that just means it has not declared itself as a named AI disease). Being on Plaquenil means you are getting treatment-- treatment that is appropriate for AI disease. This is a good thing that your doctors are taking it seriously enough to treat you properly!

    Have you tried a steroid cream for your urticarial lesions?

  5. #15
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    Thank you jolynnhughes, running girl, and Derrie

    I have not tried a steroid cream for the urticaria, but it did respond pretty well to pred last time it bruised etc. I only got a week's course though, so of course it came roaring back a couple of days after I finished that.

    I am waiting for complement results coming back, but not sure what it will show...the dermy said it looked like UV, whether hypocomplementemic or not, but the biopsy showed only urticaria. The hive they biopsied didn't bruise etc, and it only lasted 24 hours, in contrast to the bruising ones which last at least 48 hours. I suppose it's possible there's UV and 'normal' urticaria going on too? I bet if it'd been done when I was feeling really rough back in the summer there'd have been something there, but no idea if the C3 and C4 will show anything now. All I kept getting from the GP was 'it's just bad urticaria, you don't need it further investigating', until I finally got an appointment with one of the two nice GPs nearly 4 months later, and she referred me straight to dermatology and did a bunch of blood tests. It does tend to taper off over the space of about a year or so, and then suddenly all comes back again. The GP I saw at the emergency appointment said 'it can't be urticarial vasculitis, that's really rare'. Like that's a sound basis for diagnosis. Still, at least it's being looked at now, I just wish I'd seen someone willing to refer me when it was really severe, so I wouldn't be going through this now.

    I just feel like the rheumy doesn't really believe me...he must think something is going on to have ordered all those tests, I know, but he seems very dismissive of everything. He asked if I'd ever had problems with my tonsils, so I told him what problems I'd had (lots of tonsillitis, and repeated sore throats, particularly on only one side), and then he looked down my throat, and in a very surprised tone, said 'oh, yes, your tonsils are asymmetrical and full of crypts, you have had problems'. I have no idea why my tonsils are relevant, but whatever!

    Growl...it just frustrates me to be told 'you definitely have SLE' and then to be told 'you might have SLE' a few weeks later by a different doctor. At least I should get further clarification next week!

  6. #16
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    I was going to attach some pictures of mine but the pictures still aren't working I guess lol Here's my somewhat recent post about the hives I got that turned out to be vasculitis. There's a link to pictures on my photobucket in there. http://forum.wehavelupus.com/showthr...or-maybe-hives

    It basically started out as weird bumps but then they were super itchy, some of them burned, and I had the same spots for over a week, not differing spots. The pictures I took and my history of vasculitis along with seeing how I currently looked was all my rheum needed to decide it was vasculitis for me, but I've already had a lupus diagnosis for a few years.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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