I have had autoimmune urticaria & angioedema

Hi so this is my recent flare up, i have had autoimmune urticaria & angioedema for my full 40 years 😬 my outbreaks normally last 1-2 weeks but this one has been 10 weeks & although it’s under control-ish at the moment i’m still taking fexofenadine twice daily & wondering if it’s worth trying xolair? My outbreaks are awful & mean time off work etc but are sporadic so i’m not sure if it’s suitable for me (currently waiting for yet another appointment but this time at the London urticaria clinic so they may even know what they’re talking about for a change!

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Discussion

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Julie Nick Oh bless you, steroids have calmed my recent flare up but I can’t be on them forever so I’m nervous! Hope you’re ok

Hilary Lipscombe Thanks Julie i take steroids too, but just until the swelling & hives are under control then i try & stop them x

Joyce Rosenblatt Good luck. This group will be a help.

Lara King I’m flaring big time as well at the moment. You have my heart! Big hugs

Rhoda Young It’s such a hellish condition

Anna Picciani Yeah I resort to steroids when I get like that.

Hilary Lipscombe Me too 😔then try & stop when they calm down

Jayne Cooke I sympathise with you all. I had a 9 month remission (secretly hoped it had gone!), but it’s back and driving me crazy. Can I just ask – where is the London Urticaria Clinic? I live in the UK so might be somewhere I could try?

Hilary Lipscombe It’s at guys & st thomas jayne, there is a dedicated urticaria clinic. My gp has referred me but I haven’t managed to get an appointment yet! So i am going to go privately, i have had good recommendations from the lovely people on this site. We live nowhere near but it’s worth a go, i get fed up with immunity/dermatology consultants who haven’t got a clue about our condition! x

Jayne Cooke Thanks Hilary. It is near me but was never mentioned to me by my GP. Went privately last year and got some good meds which helped – Bilastine – but they stopped manufacturing in the uk. Worth knowing about the Guys/St Thomas’ clinic though. Good luck with your appointment x

Hilary Lipscombe Thanks Jane, i’ve been privately a couple of times but never to an urticaria specialist so i have high hopes 😊 i found it searching the internet as i find most doctors haven’t got a clue about urticaria! I made the trip to hope hospital in manchester when the consultant sat & got a book out to look it up

Janice McClurg Definitely try Xolair.

Jon Bunner Why not try? Mine looked like yours. Starting at my wrist and ankles. On xolair i am hive free 95% of the time.

Hilary Lipscombe Glad it’s working for you Jon

Bev St Vincent Hello I live in Canada and I suffer from this my doctor had me do up to 15 IVIG treatments did not help. Then I had Plasmapheresis is a process in which the liquid in the blood, or plasma, is separated from the cells. In sick people, plasma can contain antibodies that attack the immune system. A machine removes the affected plasma and replaces it with good plasma, or a plasma substitute. That was in 2008 and I haven’t had any major out breaks I am sharing to let others know

Hilary Lipscombe Wow that sounds amazing Bev! Sounds quite a major thing to go through? Really glad it’s working for you

Sue Elshire Hargrave I’m so sorry! I understand I don’t go a day without it, and I applaud you, as I have only had this for almost 14 years. I cannot imagine having this for 40 years without a day of no hives. You are amazing. Please give the Xolair a try. It could change your life. I did the trials, and tried it again later. It didn’t work for me; however, most people have such resolution due to it. Best wishes! You are amazing!

Hilary Lipscombe Hi Sue i’m not that brave! I can go for months without a flare up, some poor people have it constantly. But i do get really awful flare ups, spotty & my hands get so swollen i can barely move my fingers – not easy to change nappies etc! Because it’s intermittent i’m not sure if xolair would be for me 🤔 i’m so sorry it hasn’t worked for you, i hope you find something fabulous that works soon

Serena Lynn Started xolair yesterday!

Jennifer Glover Give it a go especially after looking at what you’ve gone and going through. I’ve started cyclosporin im onto second week and feeling itch is more manageable. I’ve had mine about thirty years but won’t be signed off for xolair as I’m not diagnosed with auto spontaneous urticaria. Diagnosed with dermographic urticaria. Good luck and hope you feel better very soon.

Hilary Lipscombe Thanks Jennifer & i hope the cyclosporin works for you! There doesn’t seem to be that many of us who have had urticaria as long as we have! Thank goodness for this site where we can chat to people who understand & can offer advice

Jennifer Glover I know its the first time ive ever started to understand what I have. I self diagnosed myself years ago but there was such little information i could get no help, no hope an relief. Im happy to be trying something, im not a huge fan of tablets but Im so grateful to be trying anything that may help. The ciclosporin has definitely eased my symptoms but having a flare up on my face last few days. I just hope the tablets kick in. I still get ugly red welts but theyre not as itchy as they were. I actually dont care about the redness Im striving to be itch free and comfortable in my own skin. Take care Hilary and let us know how you get on.

Hilary Lipscombe Thanks Jennifer, fingers crossed for you & i’ll keep you posted

Julie Piskin Thank you for Sharing your experiences. My daughter is now 9 and suffers from this. I realize I can’t understand it completely but I do believe her. We have been to several doctors who treat us like we are crazy. I am very jealous that you have an urticaria clinic, I don’t know the answer about xolair but if you go this route I hope it hwlps

Hilary Lipscombe Oh Julie, i really feel for your daughter knowing i went through it from an early age. My mum didn’t understand & it still frustrates her i have this blooming affliction! But at the age of 40 i still need her love, cuddles, sympathy, listening ear etc to get me through these outbreaks! The only advise i can give apart from countless trips to the dr are to spoil her rotten when she’s poorly, listen to her moan & let her have a good cry. Tell her she’s not alone. Let her stay in the house & not face people & smoother her in menthol arjun cream 😊 hope you get a treatment that works for her

Julie Piskin Thank you for your kind words. It is so comforting to talk to people who have gone thru this as a child. It helps me understand a little better how she feels. My daughter does pretty well with the mix of medicine she is on, by staying out of the sun and being careful of the lights she is around. Definitely not the life I/we imagined but we have to be grateful for what we have. Please keep us posted I. How you are doing.

Martha Fitch Hilary, I’m on fexofenadine 180 and zantac both twice daily and seems to hold the angiodema and urticaria at bay. Very interested to hear how it goes for u in the clinic

Hilary Lipscombe I take 360 fexofenadine & up to 90 of prednisolone depending on how vile the outbreak is, or on good days just 120 fexofenadine. I just decide on my own dose, gp’s end up giving me what i ask for because I don’t think their knowledge of urticaria is ever particularly extensive 😞 plus they don’t need to spend much time with you! Looking forward to having a chat with a consultant that has an interest in urticaria

Lawa CC Is it the urticaria clinic at guys and st Thomas’s? If it is it’s great they have world experts there. Changed my life can’t recommend enough c

Hilary Lipscombe Hi Laura, that’s good to hear 😊 i’ve been referred there by my gp, just trying to get an appointment! If I don’t get a date next week i think it will be worth going privately

Lawa CC I went private with a consultation with dr grattan then my gp referred me so my follow up ended being nhs at the clinic which worked really well and was well worth the money

Hilary Lipscombe Thanks Laura really looking forward to having a chat with him