In need of support / positive posts - suffering with CU since December '19

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Apologies in advance for the following off-load / rant. I’m desperately in need of any support / positive posts / comments.

I’ve been dealing with chronic urticaria since late December ’19. The hives first appeared on my inner arms after I came back from a run. A few days later I started with a bad cold – during this time a rash (now I know to be hives) would randomly appear on my wrists though out the day. I finally felt well enough to run about 2 weeks later – after which my arms were covered in hives again. After initially visiting the pharmacist I was told it was probably viral (could be related to my cold) and that the rash would likely clear up with a few weeks. Sadly that’s not been the case and over the following few months the hives have got worse, and now trigger daily on my arms, legs, back, stomach and feet. My triggers are definitely the cold and also exercise. The weekly trip to the supermarket is now a complete nightmare, having to wait outside the supermarket due to the current social distancing isn’t helping, but the main issue is having to run the gauntlet of the chiller cabinets. Despite having jeans, 2 tops and a windproof jacket on today I could feel the hives coming up on my legs whilst still in the shop.

I didn’t go to the doctors initially in February – as the hives come and go throughout the day and I thought how do I explain to the doctor if I don’t have a flare up at the time of the appointment (clearly I should have photos – which I have subsequently done) – this was before I realised the cold was the main trigger. I initially thought it was some exercise induced rash. How I wish I’d gone in January before this thing took a real grip! February rolled into March and coronavirus - and the last thing I wanted then was troubling the docs with ‘a minor rash’ (minor in comparison to Covid – but massively impactive on daily life).

I kept hoping the problem would resolve itself, but when it got to mid-April and I could stand it no longer I contacted the doctor. I’ve tried 3 different anti-histamines (including increased ‘off license’ dosage) and am currently on a 7 day course of prednisolone – sadly nothing is working. I’ve also been referred to a dermatologist – appointment currently awaited. When told by the GP that for a lot of people hives clear up within 6-12 months I thought I can’t live with this for another 7 months, but having further researched it I see people have this for years – this fills me with absolute dread!

It impacts on all aspects of daily life, from what I wear to what I do. During lockdown a walk round the block would have been great to get out of the house, but knowing the walk /the cold would trigger a reaction I have rarely done so. I have persevered with my runs as they are the thing which keeps my sane in life, but have pretty much come to the conclusion today that I shouldn’t run, so as to avoid triggering them / making matters even worse. I can’t believe how depressing, upsetting and frustrating this all is, and was in tears at work yesterday on 3 separate occasions, when different colleagues I’ve shared this with asked how I was doing (and am upset just typing this post – I seriously need to get a grip / give myself a stern talking to!!). Every time I try a new medication I’m desperately hoping it will work and then get really down when it doesn’t. I felt like steroids were the last throw of the dice, but am hoping there are other potential courses of treatment. I feel like I have no life, just sitting on the sofa, doing bugger all to avoid triggering a flare up. I literally can’t go out or if I do (even on sunnier / warmer) days I have to be really mindful of what I wear. Even hanging the washing out will trigger a reaction (unless it’s 25 degrees – which sadly isn’t that often in the UK!)

Anyway, once again sorry for my mad ramblings / off-loading – but any support / positive posts would be HUGELY appreciated. Thanks all.

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  • Posted

    hi there, ive had delayed pressure and chronic idiopathic urticaria fir about 2 half years now. I found just antihistamines and steroids do not work. The dermatologist will try a various of medication to see what suites you. i also take omlizibab injections 300mg every 4 weeks and dapsone 100mg daily with 4 certirizine which i have to say has now got mine under control. i do have the odd day where i may have an outbreak and i do still suffer from swelling of the eyes and face slightly in the morning but thats due to to sleeping on a pillow for a long amount of time. mine is due to heat and exercise, or tight clothing or leaning my body on a surface for too long. sorry i know how upsetting this is for you and yes people put their experiences on here which look scary. I wont lie, its a bit of a journey but once the dermatologist finds what suites you, at least you will have more control. St Thomas's hospital is great, and im under my local hospital too as London is not easy fir me to get to. some of the medications do have side effects but anything was better than living my life like i was.

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  • Posted

    First of all so sorry you are dealing with this.. I know how awful it is.. when i was in my 20 I had hives a few times, then ocassionally here and there over many years but they always went away.. But now when in my 60 they came back with a vengance so i tried everything lots of drs, lots of tests, lots of meds.. They could not find a cause or a cure.. But told me it is a young persons disease ok I m no longer a young person and i had them.. So finally when nothing else worked my allergy dr recommended xolair shots which are for asthma but they found it works for hives.. What a blessing they took about six months or so to really begin to work.. I have now taken them for three years and no hives.. I did try once to wean off of them and delay my shot by five days what a mistake , they came back so back it was very difficult for my dr to get them back under control so I no longer think of going off of them.. When i had the hives they were huge and all over my body every single day .. I did end up in the hospital as my throat started to close and I do have angioedema or did but with the shot I no longer have the hives.. Maybe you should talk to your dr about this shot.. however it is not without side effects like all meds.. for me i gained 37 lbs and lost hair and joints hurt.. my joints no longer hurt and my hair is back but i cant lose this weight but i also have a thyroid issue that could be part of the ccause.. I have since found out automimmune diseases can cause the hives as well and i have two of them ..I just know I wont be going off the shot and i love being hive free.. and my insurance covers the shot which is extremely expensive.. are you in the USA?

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  • Edited

    Hi, I suffered from chronic urticaria for about five years. It was awful, from the neck down and relentless. I am afraid to say I no longer do in case it comes back but it hasn't posed a problem to me for approx 2 years now. Prior to that it was all consuming. Everything triggered it - heat, cold, exercise, stress, fruit, alcohol, pretty much everything in my life and I felt embarrassed to go out. I tried every antihistamine going and in the end that caused outbreaks too. I took tablets to suppress my immune system and ended up with chicken pox in my 30's. The more it consumed my thoughts the worse it became.

    Eventually I realised that doctors couldn't help me. They don't understand the origin and only treat the effect not the cause. I stopped taking all tablets after i got chicken pox and instead i decided to go down the alternative route. I took a course of acupuncture and my symptoms massively decreased. when they started to crop up again i went back for another course of ten. I am currently two years without return. I am not against modern medicine in any way however I don't believe that enough is know about this condition to treat it effectively in that way so I truely recommend that you try what I did, I am so glad that I did. I wish you all the best

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