Cholinergic urticaria

[runningonberocca]

I’d really love to hear of anyone’s experience with this. I think I’ve developed since having Covid. Every single day since March I’ve had a horrible itchy red rash - which comes and goes - any exertion - like a short walk it’s there, if I stop exercising- went for a run and got in the shower- massive flare, if I’m stressed it’s there , or cold.
Only time it’s gone is during sleep, or if sunbathing on a hot day! It eases off a lot of just sitting inside and not stressed. But it’s been awful
I have tried - loratidine - did nothing, cetirizine bit better than loratidine but still rash every day. GP prescribed fexofenadine 180 - I think it got worse so I’ve gone back to cetirizine. It’s getting more widespread. Beclamethasone cream did nothing. I’ve double dosed cetirizine today .
Feel like it will never go .. photo of my poor arm below

I think cholinergic urticaria tends to be smaller hives tightly packed together.

What you've got and the circumstances you're describing sounds a lot like how my exercise induced anaphylaxis started out initially and then over time it progressed. Anaphylaxis U.K. has good info on this. EIA can also be triggered by alcohol, stress, menstruating and NSAIDs or a combination which can make it worse.

It can be a fuzzy line between cholinergic and EIA, so just want you to be aware.

Despite its name, EIA doesn't always result in anaphylaxis!

Thank you Yarnysaura! I thought it was exercise induced at first but it doesn’t resolve very quickly after exercise and can flare when I’m just sitting at my desk! I am really worried that it will turn to anaphylaxis and have stopped running just in case. Did go for a very very tiny jog on Sun ( day 1 of C25k) and while the rash wasn’t that bad when exercising it was really bad after I showered.

I hope you don’t mind me asking but what has helped you? Do you exercise? Or have an epipen? And how did you get your diagnosis? I just really want a dermatology referral or should it be immunology? Sorry for all the questions!

Hello. When I've had bouts of unexplained hives (they're bloody awful!) traditional antihistamines didn't help, steroids didn't do much either. But indigestion tablets did help https://www.health.com/hives-overview-7109904 as mentioned in this article. Could be worth a go?

That’s really interesting. I’ve a phone appointment with my GP in about 2 weeks- will ask about this too

Mine is wheat dependent so by going wheat/gluten free I can avoid triggering it, thankfully. My threshold was really low so I got to the point I couldn't even go for a walk or do chores if I'd eaten as I had no idea what might be causing it as it's so unpredictable.

I was diagnosed privately by an amazing immunologist from Guys after years of not being believed by my GPs. I have epipens now.

I think as yours is 'just' hives (and I don't say that lightly, I just mean without other symptoms) dermatology is probably the sensible first step.

Thanks again. Weird - hadn’t considered wheat because I’ve been eating it all my life. ( and I’m nearly 50) but the very first episode I had was after eating a really fancy sandwich on freshly baked bread for lunch ( from a deli - I don’t have the bread baking skills!)

Your posts have been really helpful for me.

Really pleased to help, I wasn't sure whether to suggest EIA but it does sound an awful lot like it could be.

Same with me for wheat, and because I could eat it mostly without reacting I never considered it a possible, and slowly removed loads of things from my diet that I suspected were the cause. GPs were useless so I ended up working it out for myself, I didn't even realise that the reactions I'd been having had been anaphylaxis, I knew they were severe reactions, but they weren't typical (also common for EIA) but the immunologist was certain they were and bloods proved the allergy to a pesky wheat protein called omega-5-gliadin (most common cause of WDEIA).

I started having symptoms in my mid-20s, finally diagnosed early 50s.

Thank you so much for this advice. Had my gp appointment yesterday and he agreed to start famotidine ( Pepcid). Although he took a bit of convincing! Took my first dose last night - and today is the first day since March that I have no rash!!! It’s amazing! Thank you!

That's fantastic, fingers crossed it continues to work 🤞🏼

Hello! Sorry I missed your update, but that's great news. Hope it's still working ☺️

Still working! Have had a couple of hives maybe 2-3 times - lasting only minutes over last 2 weeks. Such a huge difference from my arms and legs being covered for hours of every day. I can wear short sleeves, go running etc..
Absolute game changer for me!

Amazing! Haha hope your GP is taking notice 🙂

Fabulous!