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View Full Version : Did anyone's lupus start with urticaria?



Firefly
12-29-2012, 01:12 PM
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?

jmail
12-29-2012, 08:11 PM
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.

Firefly
12-30-2012, 01:40 AM
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!

steve.b
12-30-2012, 06:23 AM
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.

Firefly
12-30-2012, 07:28 AM
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!

Nicole
12-30-2012, 08:04 AM
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.

tomcatsgirl
12-31-2012, 11:32 AM
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.

Firefly
12-31-2012, 11:38 AM
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
12-31-2012, 11:55 AM
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?

Nicole
12-31-2012, 01:50 PM
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.

Firefly
12-31-2012, 03:06 PM
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?

jolynnhughes
12-31-2012, 03:16 PM
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!

running girl
12-31-2012, 04:06 PM
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!

Derrie
12-31-2012, 05:46 PM
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?

Firefly
01-01-2013, 02:44 AM
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!

ritzbit2
01-06-2013, 05:57 AM
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/showthread.php?12489-Rash-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.