Urticaria - has anyone ever found effective treatment?

[Millionprammiles]

Have hideous urticaria, used to be only in the Summer months but now is year round. Already on prescription anti-histamines, steroid creams and have had one course of oral steroids for a very bad flare up.
Has anyone ever found or been prescribed anything that actually seems to make a difference??

Its depressing :(

I wonder if you could request some allergy tests through your doctor's to get to the root cause? My son was referred to our local hospital to have what I think was called a skin prick test. Several common allergens where applied to different parts of his arm and any reactions were assessed. It does sound as though you have some sort of reaction to sunlight or heat. I hope things improve for you

Its definitely heat related, eg exercise and hot showers make it worse. I've atopic eczema so I'm prone to this sort of thing (and have known allergies to detergents and perfume).
Its just so uncomfortable, like my skin is burning. And I wonder what all these anti-histamines are doing to my body in the long run.

just watching out of interest as my dmum has been suffering from this and despite seeing the specialist several times has found very little that helps... just hoping that something will come out of the depths of Mumsnet knowledge

There is a drug called omalizumab that's used for severe asthma that has been used for chronic idiopathic urticaria with some success.

stressed - I'm wondering if that's the oral steroid I was given (the GP said it was used for severe asthma). It cleared it completely but can only be used for short term (couple of weeks) temporary relief. The hives came straight back.

I've had hideous urticaria too, for months, at its worst it kept me awake at night and had me stabbing myself with a fork during the day to try and get some relief without scratching. Mine sounds different to yours though and was triggered by an infection, though heat/sweat definitely made it worse.
In my experience GPs will only be able to do so much - antihistamines + the odd course of steroids which they will (rightly) be increasingly reluctant to prescribe. I only got some relief when I paid for a referral to a dermatologist (was told I'd be waiting months for an NHS referral). Best £250 I ever spent - the chap prescribed me an unlicensed dose of the antihistamines that the GP had already tried (540mg Fexofenadine - GP later said no way she'd be able to prescribe that much) + an antidepressant called Doxepin (which at low doses has an antihistamine effect) + an asthma drug called Monteleukast. They worked a treat and whilst the rash didn't go away, the itching almost disappeared, which was good enough for me.
My advice is that if your GP can't control the urticaria and It's causing you grief that you ask what else they can give you, or get a referral. The dermatologist said the antihistamines are v v safe, lots of long term studies done so I'm still on them now a year later (though have been able to drop the other drugs). He also said there were lots of other treatments they can try, and that there is no need in this day and age to suffer with it. Key thing is that you will probably still get flare ups, but if it's controlled properly then the flares won't be as bad.
Best of luck with it!

Yes! I have had awful bouts of urticaria - a few months long. Mostly in summer, but am having a bout at the moment. It was just terrible - massive hives all over my body, occasionally swollen eyes or lips, dreadful itching. Every single day for months. I had tried all kinds of antihistamines and nothing was working. No idea what causes it. A specialist recommended I try a combination of two drugs: Cetirizine (normal antihistamine) and Ranitidine (the generic name for the drug often branded as Zantac).

Now it seems a bit odd to take Zantac, as it's an antacid type thing, used for indigestion. But apparently it has a kind of side-effect of working on another type of histamine receptors in your body which normal antihistamines don't work on (or something like that!).

Anyway, to cut a long story short... I started taking them (one of each tablet, once a day, but you can take the Zantac twice a day if it helps), and after two doses the urticaria was gone. Totally. Like magic. I kept on taking them for a while, then occasionally tried skipping a couple of doses to see if the urticaria came back. First few times, it did come back, then one day I stopped taking the tablets and no more urticaria.

I don't know if it works for everyone, but you can get both tablets over the counter, and they are pretty mild non-problematic drugs as far as I know. Worth a try!

Have you seen a dermatologist or immunologist?

Mine only went when I saw a dermatologist - it took months (possibly a year) and it disappeared as mysteriously as it came.

Apparently allergy is unusual as a cause and she didn't recommend allergy tests - she must be right as I don't do anything different now to then and I don't have it any more.

She also didn't recommend steroids because as you have found, it just rebounds even worse when you stop them.

I had massive doses of 2 anti-histamines (fexofenodine 540mg and desloratidine) and it disappeared. Like merciful after months I was able to drop doses and eventually came off them and it never came back.

"Now it seems a bit odd to take Zantac, as it's an antacid type thing, used for indigestion. But apparently it has a kind of side-effect of working on another type of histamine receptors in your body which normal antihistamines don't work on (or something like that!)."

mercifulTehlu - a consultant paed in allergies prescribed my dd the same thing

Hmm maybe I need to see a dermatologist. Have seen one in the past for eczema so might go to the same one.

Currently am on 360 mg of fexofenidine and 2 cetrizine a day (so double the normal dose), all are as prescribed by GP. Also piriton at night. The dosage has increased over the years. Maybe I need to up the fex. Will ask GP. They have been pretty good so far.
Will also try Zantac.

Incidentally have found derma itch relief cream (available freely, don't need a prescription) v good for the itching. Would recommend it to anyone with this sort of thing.