idiopathic urticaria with SLE

In March I started getting severe allergic reactions to something unknown. Severe itching and a rash all over were the first symptoms. As the months go by the symptoms seem to change. In July I am now getting the rash and itches, but feeling ill, doubled over with cramps (despite it not being my period) and for the first time today I also vomited. The allergist said it was IU and seemed to blow it all off as common. Take 20mg certirizine and you will be fine. Not so! I can be laid out for several hours until things subside enough to function. It always starts in my throat. I feel this odd sensation, then my tongue and lips get a little swollen, start to itch, hands and feet feel a bit swollen, then it can be anything else added to the mix.

Anyone else suffer the same? It is autoimmune related apparently. There is no correlation to anything, happens at home, work, day, night, etc. I am really suffering and feel slave to it because I have no idea when it will happen. It tends to happen around my period, but also mid-month as well.



8 Replies

  • Hi Stacey

    So sorry you are going through this. It's so frustating trying to figure out what's going on. Have you been diagnosed with SLE? Any other symptoms? Specifically any mouth lesions? Or diarrhea and/or constipation with the cramping?

    It is scary when this happens especially when it involves facial and mouth swelling. Could be allergic reaction but it sounds like auto immune related since it comes with flares.

  • Hi, thanks for your reply. Yes, SLE, but mild. Do get mouth ulcers. Sometimes diarrhoea, but the meds do that to me too. It is supposedly just hives, but I fear it may be worse. The culmination of everything is too bizarre.

    Have quite a few autoimmune issues, including vitaligo, Lupus SLE, etc. and have just started having urticaria. It began in March 2015 out of the blue. No warning, no common theme and at work if you can imagine! Hot, sweats, swollen lips, tongue, feet and hands. Very itchy, to the point where one episode it looked like a murder had taken place because of all the blood. The symptoms seem to change from event to event. They tend to happen around my period, although I still get the odd mid-cycle ones. No one knew what it was- not even A&E. I pushed and pushed and got to see an allergist. She was very quick and almost dismissive saying yes, it is hives. Great. And!? No cure, no idea why, no ability to plan. Just take some antihistamines.... Not much help. I also have nodular prurigo and this makes it much worse. My body hates me and it feels like me and my skin are at war. The last attack was today. Mid-cycle, no period that is, and about to go out with my son. Very hot, face flush, sweating, then itch. However, it always starts in my throat for some reason. An odd pain that can make my voice croaky and even disappear. Less itchy this time, but definitely the rash all over. Took 20mg of certirizine and hoped for the best. But started to feel ill, rushed to the toilet and hoped it would pass. Then started to get severe cramps in the pelvic area. These were bad enough and I lied down in bed. Then, for no reason I vomited. That has never happened before. A new symptom? It takes several hours to feel normal again. I am always shattered afterwards and at least today I was at home. If anyone can help, I am very desperate. I fear it happening again, feel like it is in control, scared and almost paranoid. Help me please! Thanks, Stacey

  • Stacey all I know is that any swelling of the tongue and lips is dangerous and definitely needs further investigation, forget about the allergist and see your GP or consultant about it.

  • Yes, thanks. I did go to A&E once, and they said since it went down on its own there was nothing they could do! The allergist said hives. The Lupus nurse had no idea. The GP is also unsure, but is much more willing to help me find out. I make sure I can still breathe and the GP gave me an epi pen just in case. Thanks!


  • Omg this I me I have been like this for 10 years or more got told it was urticria for years then to sle I now take methotrexate with is the only thing that has stop my swelling of my eyes tongue I now carry an eppy pen I started methotrexate in April and haven't had any rash or swelling but since the sun shine I have had it all anytime day or night I have had test after test and the only thing that stopped my rash is methotrexate I have tried to get it all in but plz message me for any advice you seem alot like me never known anyone else

  • The same thing happened with my daughter sudden swelling on face, mouth and throat and bright red and itchy. I rushed her to emergency and they acted like it was no big deal. Said to take antihistamines. Like all of you, I kind of thought swelling in the throat might be a problem. It lasted about a day. Just like yours it happened again saw GP and got same response take Benadryl. The next time we saw rheumatologist (I had taken pictures of her extremely inflamed face) he thinks it may be linked to her Crohn's flares. That's why I asked if you have any bowel symptoms.

    It's so frustrating. I'm sorry you haven't gotten any answers. Always hope I can provide a possible clue. 😀😀

  • I can't believe I've found other people with this problem! My condition started with spontaneous allergic reactions to absolutely nothing. Started in 2009. Basically manifested itself with swelling of the throat, face, lips, tongue, rashes, itching etc. Noone knew what was wrong with me or why this was happening. Saw a dermatologist in Oxford, an amazing consultant, who diagnosed me with autoimmune angiooedema and urticaria. I've been taking fexofenidine since then and up to 40 mg of ceterizine to control symptoms as well as hydroxychloroquine for SLE which was subsequently diagnosed. The very high antihistamine dosage seems to help but it's not without its side effects! Mainly drowsy etc. It was very hard to come to this diagnosis and still my rheumatologist is skeptical. I strongly urge you to fight for an epi pen. Anaphylaxis is life threatening and if you're getting allergic Reactions you never know when it could turn into this. Try the antihistamines if you can get them prescribed. I also follow a strict "immune system calming diet" which helps me considerably. I know that sounds like a load of crock but I was shocked how my health improved including less flares and less allergic attacks when on this diet. I started it about a year after starting all my Medications and I now lead a full, uninterrupted (by health!) and normal life. I would be more than happy to talk further about it if anyone wants to know more.

  • Yes, sounds familiar. I have been on hydroxychloroquine for years. My SLE is mild so not warrants anything heavier. My problem is that I get very very bad dry mouth, especially at night and sometimes find it hard to swallow. Plus, my system is quite sensitive and I can get toilet troubles too! I have allergies as typical anyway, so take something for that. But I also take 20-40mg of the ceterizine when I feel an attack coming. Thanks for your thoughts. xx

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