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Thread: Did anyone's lupus start with urticaria?

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    Default Did anyone's lupus start with urticaria?

    Hello, I am brand new here

    I have been suffering from chronic urticaria for a few years now. Sometimes it flares up very badly and swells and bruises, with each individual 'hive' lasting a few days, but mainly it is the more usual sort of rash where it itches like crazy but the redness moves around and doesn't leave marks. I also have dermatographism and pressure urticaria. I have also had a photosensitive rash that itches so badly every spring for about 5 years.

    After a particularly bad episode of the bruising kind of rash, I had blood tests done, which showed ANA positive speckled (I don't know what titre), and positive Ro and dsDNA.

    I had a skin biopsy done which just showed urticaria, and a few white blood cells around blood vessels, but no definite vasculitis.

    I also have joint pains (wrists and fingers mostly, but can be knees, elbows, and feet), these are worse in the morning, but they don't swell or go red. When the rash was really bad all my joints hurt, and my muscles, I felt like I'd been hit by a bus, I had a fever and a sore throat, and I just felt so ill. The sore throat has been coming back over and over again, for over a year, nothing shifts it.

    I am fatigued all the time, to a greater or lesser extent, I spend much of every weekend asleep and don't have a social life because I just haven't got the energy. It's a major achievement to do the laundry and the hoovering over the space of a weekend!

    So, anyway, I was referred to rheumatology, and they are not sure what I have, though SLE has been mentioned. The dermatologist who did the biopsy was pretty certain it was lupus and vasculitis, but obviously the biopsy didn't back that up. The rheumatologist seemed to think it may not be lupus, though. I'm a little confused about that, given other symptoms and blood work, and what else it could be?

    I've read in lots of places that lupus can cause urticaria, has anyone got any experiences similar to mine?

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    Hi Firefly, and welcome to WHL. I'm not a doctor, and haven't pretended to be one since I was 12, and know very little of lupus compared to the other members here, but... skin stuff can come from a reaction to anything, from what you eat, to what you wear, to the air you breath, or the meds you take, and also from disease. I used to get hives all the time, and then we figured out that I was allergic to shell fish. Bummer. You might start a food diary, and see if you can draw any lines. A food reaction can also cause joint inflammation and resultant pain. Take pictures of your rashes as you get them, and also as they progress, along with notes, and show them to the docs. We'll hope it isn't lupus, but rather something simple.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Hi Jmail, thanks for replying

    Unfortunately, we have ruled out allergy as a cause My GP told me that if it carries on this long without going away (as opposed to coming up fresh every time you encounter what you're allergic to) it's not going to be an allergic reaction, and my blood tests support that. I wish it was something as simple as staying away from a particular food or washing powder! The two things we do know that set it off are pressure (for the pressure urticaria and the dermatographism) and the sun. Any other triggers are a mystery!

    I do have photos to show the dermy, but she has seen it first-hand also!

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    firefly,
    there is lots of possabilities, besides lupus.
    there is 63 auto immune disorders........
    and many of the symptoms overlap.
    also it is not uncommon to have more than 1.
    i have 3 diagnosed and suspect more.

    luckly the treatment for most of them is similar.
    most rhuemy's will take lots of tests.
    and this is good.....
    you need to rule out lots of possabilities to be able to narrow down what it could be.
    lots of test means ..... lots of things to rule out.

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    Thanks for replying Steve

    I am waiting for results of further blood tests including complement, ESR, CPK, and a slew of others. All liver, kidney, thyroid, bone, coeliac etc markers are normal, except I always have low urea. That is not medically significant though. Am also negative for RF, La, RNP, Jo-1, Sm. Also waiting for results of chest x-ray, ECG, and having a lung function test on Friday, plus Schirmer's tear test soon. I have had episodes of leukopenia and anaemia previously but not recently.

    The only condition they have mentioned to me is SLE, they haven't said anything about ruling out other disorders, plus I can't find any other conditions besides SLE and Sjogrens that produce positive dsDNA and Ro. I would be very interested to hear about any other conditions that can cause this. Obviously I do not want to have lupus, but the dermy was convinced I do, and on all my test request forms the rheumy wrote '?SLE, positive lupus serology', so I am guessing it can't be discounted yet.

    I also have morphea scleroderma, though it is inactive just now, I only have the scars from where the lesions were. Fingers crossed it never reactivates!

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    Firefly,

    I have had Lupus symptoms for one year and was diagnosed 6 months ago. I get very itchy welts that take about a week to fade away. I have read that hives can be part of Lupus. They are also part of Hashimotos thyroidism which I was also diagnosed with. I also have joint pain, fatigue, and flu-like symptoms. It may just take them some time to figure out exactly what you have.

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    Firefly,
    I get hives periodically and have most of my life. I was just recently dxd with sle. I also get bruising its not bruising but looks like bruises. I have had several biopsies. I get my spots as I call them in clusters on my hips and under arms and back. I always have pain for a few days before they pop up.

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    Thanks for replying to me, Nicole.

    Do you have a lupus rash as well as the hives? I am wondering if the hives are something to do with being ro-positive, as that is associated with skin manifestations and photosensitivity. Or, if it is just an indication that my immune system is not behaving itself.

    I just have a hard time with the uncertainty...I don't want to be wrongly diagnosed, as obviously I want the right treatment to make me feel better, but this could take years, and I was starting to get used to the idea after the dermy told me she was 'quite certain' (in the British sense, meaning 'absolutely sure') I have SLE. I have no idea why she would say that if it isn't certain. Oh well, in a week I'll have more idea, as I go back to the dermy then. I should get some of the blood results then too.

    I just wonder if I hadn't been fobbed off by two GPs when I was covered in swollen and bruised welts, with a fever of 38.5C, and joints that felt like they were filled with molten lead, if I hadn't been told to 'just take some piriton' when prescription antihistamines already weren't working, if I had had blood tests and a skin biopsy THEN, instead of 5 months later, something more certain might have shown up. When a skin pathologist (my colleague) tells me my rash looks like urticarial vasculitis and to go and get it looked at, it doesn't do much for my self-belief when the GP then laughs at me. I find it really hard to trust most doctors, for some reason. Luckily there are two GPs at my practice I can trust (just wasn't fortunate enough to have seen them when I was so ill, you don't get a choice when it's an emergency appt), and the dermy was lovely. Not so much the rheumy, very intimidating. I do not intend to doctor-bash, at all (hence no names/locations!), just sharing my experience and a little background to explain why I feel as I do.

    For the moment I am on plaquenil 400mg, cetirizine 40mg (quadruple dose), and montelukast 5mg (half dose), and my fatigue has significantly improved, though I still feel it. My joints are still sore but not quite so much, and my skin has calmed down some but still breaks out nearly every day, usually in response to some provocation (inadvertent scratches, clothing digging in etc) but not so much spontaneously.

    Oh, I am just so tired of worrying. I worry about if I have lupus, I worry about if I don't have lupus (because then what is wrong with me??), I worry that the children I hope to have will be born with heart block or neonatal lupus because of my anti-Ro, I worry about how long I will be poked and prodded and stuck with needles over and over and interrogated about symptoms and exhausted and sore and itchy. I used to be a blood donor, I used to be able to run 10km, I used to be able to clean the whole house top to bottom in one go, I used to be able to read a scientific paper without getting lost and confused halfway through the abstract...

    Right, this has turned a bit negative, so I am going to shut up now...but I am still going to post it...I hope I don't upset or offend anyone by doing so...this is just where I am at the moment with all this, and I'm worried and upset by it. I figure most if not all of you will understand?
    Last edited by Firefly; 12-31-2012 at 11:41 AM.

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    Also thank you Tomcatsgirl! What did your biopsies show?

    My hives come up out of the blue, though I do feel grotty for a couple of days before they come back full-force, if they have not been so bad for a while. The bad swollen bruising ones hurt, and also go numb or feel like they are burning. Horrible...and they don't even have the decency to stay hidden under my clothes, either, they are literally all over the place. People look at me like I have some infectious thing at times.

    Has being diagnosed and getting treatment helped level yours off, or do they still come as badly as before?

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    Quote Originally Posted by Firefly View Post
    Thanks for replying to me, Nicole.

    Do you have a lupus rash as well as the hives? I am wondering if the hives are something to do with being ro-positive, as that is associated with skin manifestations and photosensitivity. Or, if it is just an indication that my immune system is not behaving itself.

    I just have a hard time with the uncertainty...I don't want to be wrongly diagnosed, as obviously I want the right treatment to make me feel better, but this could take years, and I was starting to get used to the idea after the dermy told me she was 'quite certain' (in the British sense, meaning 'absolutely sure') I have SLE. I have no idea why she would say that if it isn't certain. Oh well, in a week I'll have more idea, as I go back to the dermy then. I should get some of the blood results then too.

    I just wonder if I hadn't been fobbed off by two GPs when I was covered in swollen and bruised welts, with a fever of 38.5C, and joints that felt like they were filled with molten lead, if I hadn't been told to 'just take some piriton' when prescription antihistamines already weren't working, if I had had blood tests and a skin biopsy THEN, instead of 5 months later, something more certain might have shown up. When a skin pathologist (my colleague) tells me my rash looks like urticarial vasculitis and to go and get it looked at, it doesn't do much for my self-belief when the GP then laughs at me. I find it really hard to trust most doctors, for some reason. Luckily there are two GPs at my practice I can trust (just wasn't fortunate enough to have seen them when I was so ill, you don't get a choice when it's an emergency appt), and the dermy was lovely. Not so much the rheumy, very intimidating. I do not intend to doctor-bash, at all (hence no names/locations!), just sharing my experience and a little background to explain why I feel as I do.

    For the moment I am on plaquenil 400mg, cetirizine 40mg (quadruple dose), and montelukast 5mg (half dose), and my fatigue has significantly improved, though I still feel it. My joints are still sore but not quite so much, and my skin has calmed down some but still breaks out nearly every day, usually in response to some provocation (inadvertent scratches, clothing digging in etc) but not so much spontaneously.

    Oh, I am just so tired of worrying. I worry about if I have lupus, I worry about if I don't have lupus (because then what is wrong with me??), I worry that the children I hope to have will be born with heart block or neonatal lupus because of my anti-Ro, I worry about how long I will be poked and prodded and stuck with needles over and over and interrogated about symptoms and exhausted and sore and itchy. I used to be a blood donor, I used to be able to run 10km, I used to be able to clean the whole house top to bottom in one go, I used to be able to read a scientific paper without getting lost and confused halfway through the abstract...

    Right, this has turned a bit negative, so I am going to shut up now...but I am still going to post it...I hope I don't upset or offend anyone by doing so...this is just where I am at the moment with all this, and I'm worried and upset by it. I figure most if not all of you will understand?
    Firefly,

    I do have the malar rash. It has gotten more prominent as time goes on. It is usually like a hot flush to my face. It makes me look pretty healthy actually. I also have a rash on my forehead that never really goes away. It flares then subsides a bit. My skin overall is very sensitive and always has been. Mosquito bites swell up more than they do for normal people. If I scratch myself, I remain very red in the area for a while. I have to use shampoo and soap for sensitve skin. The only positive blood work I have had is ANA speckled at 320 and autoantibodies against my thyroid.

    I am right with you on the uncertainty. My diagnosis is fairly new and I am still feeling horrible after being on Plaquenil for 6 months. I wonder if they are missing something. The plaquenil helped my skin issues and joint issues but I feel very nauseas and lightheaded every day. I spend all day ruminating about what I have, searching the internet for answers, and trying to find someone who feels like I do or who can give me hope. Unfortunately all these autoimmune disorders are difficult even for the doctors to figure out and each individual has a different experience. I too miss who I was and what I was able to do. I am scared to death of the medical procedures I imagine I will need to endure and the reactions to medications I will need to take. I think this is the place we can come to and talk about these fears and everyone will understand.

    It seems that you are getting some things ruled out with the tests you are having done. How long have you been on plaquenil? You may find it helps you more as it can take 4-6 months to take full effect.

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