I have had urticaria for 4 years

Evening, well it is for me in the UK! I have had urticaria on and off for 4 years. Currently on my third major attack. I’m on ranitidine and levocetirizine. Not enough to keep my break outs away. I also feel like my airways are constricted, and I do get facial swelling too. Just wanted to say hi really, and see if anyone else in the UK has had any success with doctors/specialists? I have attached a pic of my latest attack for info.


Discussion


Katy Marie GW I’m in the UK and the only thing that has been working for me is prednisone Now I’m fat and itchy, too

Wendy Heasmer Oh Katy, that’s awful. My hair is falling out without the steroids and I don’t know why. Could be because I scratch my scalp so much? My latest doctor told me he wouldn’t prescribe steroids as it’s an old fashioned treatment.
I feel like the doctors don’t really care about this because they don’t understand it.

Maggie Maye I am so sorry, please be safe with your airways, don’t wait to long to call for help .you have epi pen???

Wendy Heasmer No, I did the first time, but last time the doctor thought it was unnecessary. And to be honest I haven’t been back to see anyone this time because they have been so unless. Just got a repeat prescription over the phone xx

Christine Sampson Xolair is now included on NiCE guidance for chronic urticaria that us refactory to antihistamine – has to be done under secondary / specialist care for me it’s an immunologist .may be worth trying this avenue it has only just been approved by nice has been having some good results.

Wendy Heasmer Ok. Thank you. They only seem to want to refer me to a dermatologist, how did you get seen by an immunologist?
Really glad I found this group, thank you all

Joanne Penfold Hi Wendy I’m from the UK. After seeing many doctors who couldn’t help I was finally referred to Dr Grattan at St Thomas’s. Would recommend asking for a referral. My meds include Telfast 180mg (2 at night, 1 in the morning) plus Montelukast 10mg (1at night) and Aterax 25mg (1 at night). I have been in remission for 9 months nearly now, but still take meds. I’m weaning of and am due to see Dr Grattan again in December. I did a detox before remission but to honest couldn’t say if this helped or not. Stay strong, wishing you a hive free day very soon x

Caroline Jackson You beat me to it Joanne! Was about to recommend Dr Grattan & Dr Greaves urticaria clinic in London!
I’m under Dr Marsland, but I’m up north. Dr Marsland is based in Salford, near Manchester. I wouldn’t hesitate to recommend him to anyone in the area. He got me started in Xolair really quickly

Wendy Heasmer Thank you both. I am going to phone the doctor tomorrow and ask about a referral. A million thank yous

Louise Love The throat swelling sounds scary. Does everybody get that? Or has everybody had it at some stage? Really feel for those who have had it so long and so bad, must be so tiring, frustrating and scary at times.

Catrina Brown My Tongue has Swollen a Couple of times But i had a Throat scare once

Keri Kennedy My throat swells at night and I wake up coughing. I even had the rash on an eyeball last week. And inside my ears argh! So tiring you’re right.

Keri Kennedy I’ve had it 6 years on and off. I’m in the middle of the worst flare up to date. Now on fexofenadine twice a day, clorphenamine and montelukast at night. Plus 40mg prednisolone which has been lowered from 60mg as it made me delirious. Hives now almost under control but only on the steroids for another 3 weeks :-/Am under a specialist in Brighton who offered methotrexate off the cuff and didn’t really seem to care. I used to see Dr Grattan who was great but I went into remission and was discharged. I’m hoping to try xolair as its affecting work and I’ve had so much time off sick. Hope you’re ok.

Keri Kennedy Oh and I have an epi pen

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