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Urticaria & Angioedema

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Posted 1/30/2009 12:07 AM (GMT 0)
Hello,

I was just wondering how many people on here have had issues with chronic Urticaria & Angioedema (Hives & Swelling) due to their Lupus?  I haven't been diagnosed with Lupus yet, but my Allergist and Rheumatologist think that is what I have and that my chronic hives and swelling are due to an autoimmune disease and probably Lupus.  I have gotten my hives and swelling for the most part under control thanks to prednisone and plaquenil.  I also have other symptoms of Lupus that are more common, but I don't really ever see anyone mention hives and angioedema. 

Thanks!

Kara

Posted 1/30/2009 1:16 AM (GMT 0)
Kara,

 

That was my first symptom.  I had a rash that progressed all over my body, swelling of hands, feet, joints, eyes, lips, even my earlobes.  I have been tested and retested for everything under the sun.  Been told a dx of seronegative lupus (which means it is not in the blood), fibro, allergies, MS, some autoimmune disease, and am presently being treated for vasculitis.  As this has gone on for many years for me, I have learned to just go with the flow.  If they have me try something and I feel better I am all for continuing.

 

I have a very understanding neurologist and rheumatolagist that just won't give up on me.  I think a good combo of doctors, that believe you is key to getting help.

 

Debbie

Posted 1/30/2009 1:42 PM (GMT 0)
Hey Kara, I used to get hives but I don't think it was related to lupus. I do however battle with the edma all the time. I am on lasix they just increased the doses because I am battleing the swelling right now. There are a lot of people on here that are struggeling with the swelling. Are you taking anything for it?
hugs
Posted 1/30/2009 3:12 PM (GMT 0)
That was my first symptom! The rash started on my face and neck and traveled all over. And the constant facial, throat and neck swelling - ughhh! It took quite a few years to get the official SLE diagnosis, but I was already taking prednisone to stop the symptoms. Hope you feel better.
Posted 1/30/2009 9:45 PM (GMT 0)
Kara--
My skin was red, flushed easily, I have the red face. Me or my mom did't have rashes that weren't part of allergies, the problem was was that we are hypersensitive and develop allergies to things really easily. I recently noticed changes in the puffiness and redness of my skin all over my body. I have edema too. A doc once told me he thought my histamines were messed up (before autoimmune dx) but antihistamines don't solve all the problems and make some things worse. I'm sorry I couldn't help more.
Posted 2/2/2009 9:57 PM (GMT 0)
Thanks everyone for your responses!
Okie, I have been taking Reactine, Ranitidine, Prednisone and Plaquenil. I'm almost off of prednisone. I have been taking it for 8 months and I'm now down to 1mg. The antihistimine's helped a little, but I think it was the plaquenil that has helped me the most and I think that it is the reason why I am almost off prednisone. Every time I tried to get off prednisone I would have these episodes where my lips would swell up huge, my eyes would swell, I'd get hives all over, adominal pains and I'd get wheezy. I didn't think that the plaquenil would help these issues, but it actually has and I'm so thankful I can take it.
Posted 2/3/2009 7:14 PM (GMT 0)
Kara, I get really bad hives, huge, like the entire length of my thigh, red hot and raised. They itch so bad, then hurt to the bone, then fade to something like a sunburn and pop up somewhere else. I've gotten them under contol with plaquenil, claritin, zantac and the occational medrol dose pack. That was my first symptom, it started in 2004. When I was pregnant with my second son, I developed joint pain and swelling. Beware of NSAIDs!!!! Every single one made my hives flare up horribly. Even Ultram which isn't an NSAID made the hives come back. Also, stay on the plaquenil. My ex-Rheumy took me off it and I had the worst outbreak of hives yet. Thank God they are finally under control. Best of luck you and God Bless.
Posted 2/5/2009 3:58 PM (GMT 0)

Hi,

Yes, I've gotten flare-ups of hives and/or angioedema many times! Sometimes I have just hives, sometimes just angioedema, sometimes both going on at the same time. My hives don't seem to target any one particular area as they occur just about anywhere on me. However, since my spine surgery, I do get hives on and off over my surgical site, which is odd. I also get hives over that area when I have something going on in my low back there, like disk herniation. I actually hadn't had angioedema for a while up until 2 days ago. Suddenly it occured in my upper right lip but then disappeared by the end of the day. But I've had it so bad sometimes over my eyes that I can hardly see from the swelling. It usually happens either over my eyes, somewhere in/around my lips, and even along my jawline. I take high-doses of liquid benadryl when this happens and it usually calms it down a lot, as I do not have a stock of prednisone.

Posted 2/5/2009 4:58 PM (GMT 0)

Hey Kara

Ranitidine

It had no effect at all for me.  Has it helped you?

The edema I have had, but not since I was sent to a rheumatologist.  but it always comes back.  The rash on my legs and feet are horrible.  nothing releives it.  the most incessant itching I have had encountered.  it seems that scratching it til the blood runs, relieves it for a short time.  Some days it does not itch at all, and other days it drives me crazy.

Hester

Posted 2/5/2009 5:02 PM (GMT 0)
Beware of NSAIDs!!!!

Another question for the rheumy.  I take Nsaids.  Arthrotec.  do you think that arthrotec is causing the rash?

thank you for your response

Heste

Posted 2/5/2009 10:09 PM (GMT 0)
I was told by my allergist to avoid NSAIDs because I made the mistake of taking Aleeve the one day to help with my joint pain and by later that night my hives and angioedema came back with a vengence. When I first started getting the hives and angioedema I has taking either benadryl or reactine as well as ranitidine and they would help a little bit, but when I added prednisone it started helping even more, but I was still having some issues, but when I would try to get lowered off prednisone I would get hives and swelling really bad again. My Allergist put me on Plaquenil while I was waiting to get in to see the Rheumatologist and it started to help after a month after going on it and the hives and swelling went away, but as soon as I would get too low on prednisone it would come back. My doctor decided to increase my plaquenil dose to 400mg daily and since then I haven't had any issues with hives or swelling and I'm now on the lowest dose of prednisone since I've been on it for 9 months. I'm now down to 1mg of prednisone and I haven't had any issues with the hives and swelling yet. I've been on plaquenil now for about 6 months. It's good to hear that it's helped other people too. It's so frustrating having to deal with hives and angioemeda on a daily basis. I would get so bad that I would miss days off work because I couldn't go out in public.
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