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...

Mine isn't this bad, but I eventually realised due to a bunch of other symptoms I am prob allergic to dairy and histamine intolerant.

I take zantac and zyrtec together which works. I still get the odd rash from random things like gardening or coffee pods or meringues but only get the itch when I eat dairy.

Yes, ranitidine is the generic name for Zantac, I think.

Hi sorry to hear that you are suffering. I got this about 8 or 9 years ago. Over the course of about 3 months it flared from nothing to my throat swelling up. Dr was useless, pumped me full of steroids which brought on type II diabetes and didn't refer me to a specialist until the throat incident! In fact, the night that happened, I phoned the out of hours Dr who told me to go back to bed and take some nurofen!
The specialist put me on 300 mg of ranitidine and it controlled it almost at once I sometimes get a bit itchy but I take 150 mg and it goes away. I hope you get sorted soon, it does often 'burn itself out' so hope yours goes quickly. Xx

Yes I have this badly. Suffered for years now and I have an attack every single day. It lasts half an hour or so, is intensely itchy and painful and I come up in huge white and red welts. I also have mild attacks if I absent mindedly itch myself or if a label in my clothes brushes on me in a certain way

I don't take any medication for it as really can't be bothered to. A piriton from time to time if I remember. It's just something I put up with. Attacks mainly come in the evening so I just grit my teeth for half an hour

I had this for 2-3 years. Random attacks. Always on my legs. Always in the morning. Blood tests showed nothing and dermatologist was clueless. Gradually faded away, no attacks now for several years.

Yes I get this too, since coming off Sertraline. Didn't want to end up on meds but resorted to anti-histamine before I scratched my skin to pieces. Certirizine (?) takes the edge off, but nothing makes any difference, especially on the skin.

Dr not arsed, just said eczema.

I've had this a lot in the past and have ongoing eczema and asthma. However I have not had any urticaria since going through the menopause so I think it might have been hormone related in my case - I had long bouts of daily all over hives for several months after the birth of each of my children for example and when stopping breastfeeding

Hi there,

Just typed up a long reply on my phone and the bloody thing crashed on me... arghhh!

I had Chronic Idiopathic Urticaria about 8 years ago for nearly a year. Started in the February and after a couple of months back and forth to the GPs with no cure, was initially referred to an allergy specialist who I saw in the May. Not very helpful at all (had an appalling bedside manner) - had been on Fexofenodine and Ranitadine from the GP already, but took me off those and tried me on Hydroxyzine which knocked me completely out even when starting on a low dose as recommended by my GP and insisted that I take Cetirizine despite me saying that I'd tried it before for hayfever and it gave me a headache (apparently I should just lump it). He then proceeded with allergy tests even after I'd had to go back on Prednisolone the morning of the tests due to angioedema and full body hives breaking out when I tried to stop the antihistamines for 72 hours in advance of the tests (if I was being cynical I'd say he knew that the tests were fruitless at that point but was going to charge for them anyway...) - we had full on blue light ambulance outside our house at 5am after we called NHS 111 in the middle of the night because I could feel my throat swelling up.

After that, I was on Prednisolone for a couple of weeks to bring the hives and angioedema back under control and then back on the original antihistamines. Feeling thoroughly disillusioned with the original consultant, my DH did some investigating and found Prof Malcolm Greaves at the London Allergy Clinic, who I saw in July/August and I cannot recommend him highly enough. He put me on off-label dosage of Fexofenadine 180 - 3 tablets per day. And he told me that I needed to experiment with when to stagger the doses to provide the maximum relief (i.e. I didn't have to spread them out evenly). I was also on Ranitidine.

I also tested positive for pressure hives (knicker and sock elastic was really bad). We think (although can't prove) that my hives were trigged by artificial food colourings and then hayfever season arrived, by which point my immune system got itself into overdrive and started attacking itself. The antihistamines did bring it under control, and I think I was down to 2 Fexofenadine by the October and off them completely in the January. Touch wood I've not had a breakout of hives since then but I am rigorous about avoiding artificial colours in everything, including pharmaceuticals, which is a complete pain in the arse - seriously, even some anti-histamines have colours in that have been linked to hives (the Hydroxyzine I had at the time did, and recently discovered that Dr Reddy's brand of Fexofenadine 180 does too - which I don't understand because none of the others do, they're all coloured with just iron oxide) .

I still take Fexofenadine and Monteleukast for hayfever season (and I'm still on the 180 not 120 dose). One thing I didn't realise until about 3 years ago though is that you shouldn't consume grapefruit juice with Fexofenadine as it stops it working - I've yet to find an instruction leaflet in any of the packs that actually says that - which is ridiculous! Guess what fruit juice I used to have with my breakfast...?

Ranitidine is a good extra one to take as someone else above mentions, it's a different receptor, H2, compared to the other antihistamines which work on the H1 receptors (there are two other histamine receptors, H3 & H4 but no drugs as yet which work on those), so may well help if the Fexofenadine isn't currently controlling it completely. I don't think I started taking Monteleukast until after the hives, as part of my hayfever treatment (I now get seasonal asthma which affects me when I exercise hard outside in the hayfever season), Monteleukast works on the leukotriene receptors in the lungs and bronchial passages so may or may not help with the reaction you're having.

Sorry, that was a bit of an epic post! It was something that affected my quality of life pretty badly (and at the time didn't know when it was going to end) that I'm quite passionate about it still.

Happy to answer any other questions.

Yes I also take cetirizine, montelukast, and ranitidine, and sometimes fexofenadine as well. I had been on the 4x dose of cetirizine, but it was causing changes in liver blood tests, so I stopped that. At the moment, it seems to be basically controlled. I rarely got raised hives or redness, but just the itching, terribly. It isn't gone now, but it's manageable, and just comes back on occasion.

I have dermographism too I've tried every drug but the only one that's left is cyclosporine which I can't have because I'm immunosuppressed already!
I get itchy red hives but I just put up with it now. 20 years and counting... Stupid cholinergic urticaria

Yep. Had it for 6-8 months last year. Tried cutting out loads of things but nothing made any difference until I started taking a good probiotic (Biokult Advanced) and switched from certirizine to levocetirizine. Fexofenadine made mine quite a bit worse. There's a good FB support group: Chronic Urticaria UK & Ireland.

Wow, thank you so much for the replies all! Ranitidine sounds like a really interesting option - I'll see how the Montelukast goes first and bear it in mind.

@Weathergirl1 how did you get the appointment with Malcolm Greaves? It sounds like my urticaria is less severe than yours but the pressure hives are definitely a problem. For me it seems to be heat, but I always have a rash all over my thighs and belly if I wear gym leggings, and in the morning if I'm having a breakout on my chest I can't even have a loose V-neck T-shirt as it aggravates the hives, my whole chest has to be exposed. I have hardly worn jeans in ages either because I itch around the waistband.

I think the ranitidine that I get on prescription might be higher than the dose that you can just by off the shelf, so might be worth asking GP for that. I think also that the evidence shows that it works in conjunction with another antihistamine, rather than alone, for urticaria, so don't stop taking the antihistamine.

I think my DH just contacted his secretary at the London Allergy Clinic and made an enquiry. My GP then wrote a referral letter. We were using BUPA but had just about run out of the year's outpatient limit seeing the useless previous consultant (who would have probably been the same one I would have seen had I gone through the NHS) so I think we paid the balance ourselves.

Facebook Groups weren't really up and running that well back in 2009 but I was in a yahoo email group that had worldwide members (a lot in North America but also some Brits). I'd definitely second Parched's suggestion for looking at the group though - you get lots of tips and tricks from people who are also suffering. Also, remembered that I made up a lotion to apply, using Eucerin cream and adding sodium cromoglicate (Opticrom) eyedrops.

Yours doesn't sound as severe as mine (thankfully) and hopefully you'll be able to get it under control with normal levels of drugs - but as you can see, if not, there are things they can do.