Chronic urticaria - anyone else?

[QuimReaper]

I started suffering with this in April. I am finally on daily Fexofenadine which I think is making a difference, but it comes up several times a week and sometimes it really gets me down.

I just wondered if there's anyone else out there who fancies commiserating? And maybe sharing magical cures which my useless GP hasn't heard about...

April?! January that should say! April was only last week, I'm not that precious

Hi, I had some terrible outbreaks of this in my 20s and was admitted to hospital once when my lips started swelling. It was controlled well with Piriton (which you can buy from pharmacy these days).

Seems it was caused by gargling aspirin, which GP had advised me to do for persistent sore throat. Stopped aspirin, urticaria receded.

The only time I ever get a twinge is on my palms, always after I've handled a supermarket trolley or basket handle, so I assume that's someone else's sweat or aftershave or something but a Piriton tablet helps. (You can get non drowsy versions now I think.)

It's a horrible thing and I sypathise a lot

Thank you! Sadly I take Piriton like a champ all summer for Hayfever so am near-on immune to it now

I wish I could pin down the cause of mine - when I'm having a flare-up it's aggravated by almost anything touching my skin but I don't get the feeling it's caused by anything topical.

Yes, I have chronic cholinergic urticaria. So if I got hot or stressed or my heart rate goes up or exercise then I get hives
Beta blockers worked for me for a while, and I'm on 4 X cetirizine a day at the minute. I've had it for 20 years now

I've had it for about 10 years and take cetirizine, but most days i manage with just one, though my back still gets really itchy, to the extent that if i'm being examined at the GP surgery and it involves taking my top off I explain in advance. Quite often my face itches too.
I was really pleased to see this thread as I haven't come across anyone else with the condition.
I'm on a beta blocker too, but that's more recent and just for blood pressure.

Mine is very linked to my stress levels.

I had urticaria and angio-oedema for 6+ months very badly, admitted to hospital as throat swelled up etc. Fexofendine worked for me but was on a double dose plus a traditional 'drowsy' antihistamine at night time to stop me waking up scratching.
Mine was auto-immune related, sometimes flared up after food, othertimes stress, exercise and for no-reason. I went on some kind of asthma drug which had a side effect of improving reactions. I think eventually that got on top of the reactions and my immune system seemed to 'reset' and my urticaria went. The odema took longer, still suffered occasionally for a couple of years.

So, see if you're on the right dose, are you still itchy? Referral to the allergy clinic to rule any allergies out?

Good luck, it was a miserable time

Yes I've had it for about 15 years. Seems to be triggered by contact/ pressure, eg clothes rubbing or from a bump. Possibly heat is a trigger too and also much worse just before my period. Stress related too I suspect. It flares up badly at times and I may have new patches every day for a couple of weeks across much of my body, then nothing for a couple of weeks. I have had blood tests for auto immune things but nothing came back. I do get asthma too. Over the counter anti histamines made little difference but now I have fexofenadine on prescription which really works. I usually just take 1 tablet if I have a hive starting, but could take 1 a day as a preventative if having a bad flare up.

My dsis got this after taking nurofen daily for months as agreed with dr for pain management for a chronic condition. She stopped the nurofen and the urticaria stopped.

Miserable isn't it. I had it for 2 years and then it disappeared as mysteriously as it arrived.

If I remember correctly I had double dose cetirizine and 4x dose fexofenadine. I was under a dermatologist for it. And yes I do have asthma and ezcema as well.

If daily fexofenadine isn't working get your GP to refer you to an immunologist rather than keep trying to manage it themselves. GP probably won't be confident in increasing the anti-histamine doses unless they have derm experience - my pharmacist used to double check with the hospital every time to make sure they hadn't made a mistake

Oh forgot to say - I never identified a trigger. I don't do anything different now to then and I don't have it any more.

The dermatologist told me if an allergy isn't obvious eg aspirin, nurofen not to go looking for a food allergy as there wouldn't be one - most were an overactive immune system so I was just stuck with it.

Which was depressing but also a relief in a way as spending my life avoiding something was very unappealing.

Long timer sufferer here. Anti histamines make no difference, appears to be auto immune but blood tests don't confirm it. Get the lupus butterfly rash but gp says it's not lupus. I'm at a loss after 15 years of this.
It tends to flare up for a few years then dissipate so I've just learned to live with it

I Get it from pressure, never been to the doctor about it as when it was really really bad in my 20s I was living in France.
I probably only get it once a month now if I wear a really heavy rucksack or wear high heel sandals - I'll get welts where the straps have been. Or if I carry really heavy bags my palms swell up.
I find ice or heat packs alternated help provide some relief.

I've had hives on & off for 7 years now. Just take anti histamines.

I can never pin point what causes the outbreaks but I have Rosacea & polymorphic light eruption too so just have skin issues I guess

I've had it for 20 years. It was worse the first couple of years and has eased over time, but is still there. Controlled now on 1 ceterizine/day (used to be more). I find the first areas to go are my palms, soles of feet & around my eyes.

I developed asthma about a year after the urticaria, and that got worse until I was eventually prescribed Seretide - that made a massive difference to my asthma, and I wonder if something in it is generally good at calming down my system craziness so also helps the urticaria?

I think mine was initially triggered by a kind of allergic reaction to disposable gloves that I wore at work when I was a teenager. But it has outlived the gloves by a couple of decades so I might well be wrong. It's generally worse when I'm stressed or tired, and flares up when I have a shock or am very emotional. It also comes on with contact or pressure on my skin.

These are really interesting to read. Mine also flares up when I'm emotional or have had a shock- that really resonates. Often around my eyes/ lips/ occasionally tongue. Otherwise often a joint- hips, knees, wrists. Or can be soles of my feet or palms.
The original reaction was on a trek, climbing a mountain, could have been an insect bite, or changes in temperature, or different clothing. Then nothing for a few years till a very stressful time. I was hospitalised at one point with angiodema.

Was also diagnosed later with asthma and the steroid inhaler seemed to improve things.
Nurofen seemed to be a trigger too.
Have seen a dermatologist a couple of times but mostly I just live with it in between. I read that it can often be an auto immune thing that doesn't show up till later tests.

Thanks all so much for the replies! Same triggers here mostly: poor sleep, heat and pressure. Stress isn't currently a factor, but emotion / shock definitely. When my Dad was in ICU a few weeks ago, by the end I looked like a freak show exhibit

Is anyone else triggered by alcohol? I've always had that thing you get where you get a red flush in the chest from wine, so I think it's just an extension of that.

My GP was totally blasé when I went in with it. I had to see a different one to get the Fexofenadine, and even then I had to ask directly for it.

I have suffered with hay fever since I was about 11 and basically on daily antihistamines from April to September and have very high tolerance. The hay fever has been terrible the past few days even with the Fexofenadine. Sounds like I could do with a higher dose if it isn't even helping the sneezing attacks, let alone suppressing the urticaria, would you guys agree?

Yes! Go back to GP, say it's not under control and ask for referral.

www.nhs.uk/Conditions/Nettle-rash/Pages/Treatment.aspx

Don't get a course of steroids whatever you do - works brilliantly but then it only comes back worse. You need everyday long term control.

You can quote guidelines above that if anti-histamines not working you should be referred to a dermatologist (in some areas immunologist) - either will do.

As you can see there are a lot of treatments for it that a specialist can give.

I think if you haven't had it, it looks like such a minor problem when in real life it drives you absolutely demented.

I'm a lifelong asthmatic and suffer hayfever too and so have had steroids a lot over the years. Unfortunately the cui means I can't take them anymore as it makes my flare up worse. In fact the hives flare up so violently it makes me throw up and pass out.

I don't drink so definitely not affected by alcohol.

I have found that the doctors just aren't interested. My allergy tests came back as basically allergic to life!

I would love to have an answer but just feel defeated by the indifference I've been met with

My DF suffered with it on and off for 25+ years and so I was pretty determined and clear with my GP that I was not prepared to accept that. Keep pushing to get proper treatment. Ask for a referral to dermatologist/allergy clinic.

My sister in law has had flares of urticaria for several years now and is on a high dose of anti histamine .
At it's worst she did get relief from Chinese medicine ( surprised me that she tried this as it's an unusual departure from the norm for her ) .
I'm afraid I don't know any details tho .

Just reviving this to say that my GP has now suggested combining Fexofenadine with Montelukast - does anyone have any experience of this?

Turns out this is the only option, as my dose of Fexofenadine is the highest that exists

I was on that at one point, it's worth a try

I get this every couple of years. No idea what causes it, but it lasts for months and is horrendous. Antihistamines barely touched it.

Or rather, it was horrendous until a specialist recommended trying a combination of cetirizine and ranitidine, which worked like magic within an hour. All hives gone. Then I take it a couple of weeks and try skipping a couple of doses. If the hives come back I carry on taking the tablets for a week or so and try weaning myself off them again. Eventually I stop taking them and the hives don't come back.

The weird thing is, ranitidine is actually an indigestion tablet, but apparently it also acts on the histamine receptors in the stomach (which don't respond so well to antihistamines). Or so my research tells me.