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(25 Posts)
Blahblahblahyadayadayada Sun 30-Jun-19 15:03:50

I’ve had this for nearly a year and am in the maximum dose of fexofenadine and have just started montelukast. I don’t know what is driving this but wonder if anyone has any experience of chronic urticaria and managing it? I’ve seen an immunologist privately and she was great; she started me in the larger dose of fexofenadine and if that wasn’t successful she suggested montelukast. Unfortunately she is retiring now but I have recently (finally) had my NHS consultation, which was all of 10 minutes long and a little frustrating. Are there any support groups? Thanks.

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BatFacedGirl Sun 30-Jun-19 15:53:39

Yes I've had it years. Twice a day ish, I itch madly and get raised welts over my body. If I had a pound for every time someone said to me ' oohh, you've been scratching yourself/ got a bad rash' I'd be rich by now

Where I differ from you though is that I don't want to take anything for it because I feel that ultimately nothing works. Because I don't feel unwell without I just take the occasional anti histamine but usually just wait for it to pass. An attack is over within half an hour usually.

Are you finding the medication working? I'll assume not as you're posting here

There's no cure to my knowledge but apparently it eventually just goes

BatFacedGirl Sun 30-Jun-19 15:56:10

This is how mine goes. Drives me bonkers.

RavenTitan Sun 30-Jun-19 15:59:05

I had this for about 10 years from 12ish to 22, always arose when I got hot. I also spent ages visiting clinics back and forth and tried various medications. I eventually grew out of it though i still struggle in the heat (but no rash or hives anymore thankfully). You have my sympathy, it is horrible.

BuzzShitbagBobbly Sun 30-Jun-19 15:59:45

Oh god you poor things.

I spent a horrible period of my life suffering hives like this, with no real explanation for the trigger. I got put on some strong anti histamines and eventually it just stopped - so there is that positive (although I live in fear of it returning)

Just seeing that pic makes me feel anxious again. You have my utmost sympathy.

EvaHarknessRose Sun 30-Jun-19 16:04:48

I get it mildly. I have found that taking a cetirazine (Zyrtec) and a ranitadine (Zantac - yes it's an indigestion pill but it is also blocks relevant receptors apparently h3 or something) daily together is enough to work for me. Just a tip I found on a net doctor site. They only work for me together, not on their own.

BatFacedGirl Sun 30-Jun-19 16:12:10

I honestly just crack on now. Not in a 'aren't I a hero' kind of way but because I'm just SO bored of it grin

It helps to know that the attacks don't last long as a rule.

I'd be wary of montelukast OP. There are side effects with that that aren't pleasant. Another tip would be to try and stop thinking about it. Hard I know but taking lots of tablets, joining support groups etc just makes the whole thing worse I feel. It's not 'harmful' as a stand alone condition and can be made worse by anxiety so try an approach of putting the condition at the back of your mind

Blahblahblahyadayadayada Sun 30-Jun-19 20:00:26

That looks awful, BatFace, though if I didn’t take anything then mine might be similar.
I don’t particularly want to take anything for it but I can’t deal with the itching. If I don’t take fexofenadine at night then I wake up itching.
I thought montelukast is generally well tolerated; it’s used a lot in asthmatic conditions. There are immunotherapies available if all else fails.
There’s an element of physical and probably cholonergic urticaria about this. I don’t think there are specific food triggers, though this weekend, I got very itchy after a petit filous (shame, as I like them!) and some cheddar cheese. So cheese seems to not agree and I’m going to trial no dairy. I have numerous allergies already so this is all very inconvenient apart from anything else!
To be honest, I don’t have time for a support group; I was just hoping there were some shared experiences on there.
So the future looks itchy for a while yet.

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Blahblahblahyadayadayada Sun 30-Jun-19 20:01:46

Eva, yes I tried ranitidine last year alongside the antihistamine and it didn’t help, sadly.
Raven, 10 years, my gosh....

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YesQueen Sun 30-Jun-19 20:04:14

I have cholinergic urticaria and was at the point of only an immunosuppressive med working - however I've now been diagnosed with a condition that means I can't try it! So I take 4 cetirizine a day and live with it. It's been 22 years now and not shifting

higgley Sun 30-Jun-19 20:15:22

Gosh you all have my upmost's horrendous and I only have memory of it. I had it for a year and it went as suddenly as it came on. Out of nowhere. I was put on steroids too. I was prescribed Telfast, is that what is still prescribed! I went on holiday a year after mine started to a very hot climate which I was terrified would make it worse but upon my return I never saw Urticaria again. Weird!

Blahblahblahyadayadayada Sun 30-Jun-19 20:17:21

Telfast is fexofenadine.
YesQueen, sorry to hear it’s been so bad for so long.
Has anyone been put on omalizumab?

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YesQueen Sun 30-Jun-19 20:18:41

I've heard it's meant to be good but I've not known anyone personally on it (I'm in a couple of FB groups)

Blahblahblahyadayadayada Sun 30-Jun-19 20:20:54

I’m not at that stage yet, as I suppose I’ve got to try the montelukast first and some elimination diets.
Although I don’t think it is necessarily diet related, there could be some coincidental intolerances. I have proper allergies as well, so developing new food allergies isn’t unlikely.
I can continue to hope this burns out.

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lazylinguist Sun 30-Jun-19 20:22:06

Oh I came on here to recommend the ranitidine and cetirizine combo, but looks like you've already tried that. sad Is it worth trying a variety of different antihistamines with the ranitidine? I'd had urticaria for months and that drug combo stopped it within an hour!

YesQueen Sun 30-Jun-19 20:24:14

I did take beta blockers for something else and I had no hives for a month which was a nice break! I'm tempted to go back to the GP and retry some meds and ask about Xolair injections

Chartreuser Sun 30-Jun-19 20:30:47

I developed this really badly as a teen for a few years, and suddenly grew out of it. I do occasionally get it, but the best thing I've found us to not scratch. Scratching causes the welts which then itch etc. a cool shirt in time can stop it more.

Just saying this to give hope that it can disappear

Blahblahblahyadayadayada Sun 30-Jun-19 20:45:16

Scratching is the worst thing I can do, though I’ve taken loads of photos to show the consultant and it does help illustrate that there is something going on.
Cetirizine gives me awful dry mouth when I’ve had it for hayfevwr type of symptoms but I’d try that if I had to come off the fexofenadine.
Sounds like it’s a bit of trial and error.

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Blahblahblahyadayadayada Sun 30-Jun-19 20:46:03

Chartreuser, thanks. Maybe by body will
Get bored with producing histamine all the time.

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MamaCasey2 Sun 30-Jun-19 21:16:53

I completely sympathise with you, it's so frustrating. I spent most of last year in utter misery with spontaneous urticaria and angiodema which meant as well as the hives I had swollen lumps under my skin as well as swollen eyes and lips. I thought I would go crazy.

It has died down now, though I live in fear of it coming back. I was on max dose fexofenadine, ranitidine, montelukast and steroids and I don't think any of them made the slightest difference, it's like it just needed to run its course. I think mine may have been triggered by stress as we moved across the country with a small baby.

I'm seeing a nhs dermatology as there is no immunologist where I live. Depending on the severity you can get a drug called Xolair as a treatment, it's supposed to be very effective. Have they mentioned it as an option? I know someone who is getting it just now as she has lived with severe urticaria and it seems to be helping her. I found private dermatologist a waste of time as Xolair is expensive and quite new for this so seems it's only on nhs. I wish you all the best and hope you get relief soon. x

Blahblahblahyadayadayada Sun 30-Jun-19 21:25:16

Thank you. The private immunologist was very good and telephoned me when I asked for a follow up to let me know she was retiring. She also talked me through the next steps/options and did say if nothing works then Xolair (omalizumab) is an option in severe cases, and the NHS route is best. I did t have angiosperms, thankfully, but as I have other allergies, I know how frightening anaphylaxis can be.
I shall have to see how this progresses and hope it dies down.

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BuzzShitbagBobbly Sun 30-Jun-19 21:43:25

RavenTitan always arose when I got hot.

Me too! The first time I thought I'd get in a cool bath to soothe it. That was when I found out cool also inflamed it and I was a hot, itchy, bumpy mess for hours. From then on I realised if I got hot or cold it would inflame sad

Even the (winter morning) walk from the car park to the hospital reception to go and see the Consultant brought it up! I spent months trying desperately to stay a 'neutral' temperature!

I am so weird about any skin condition now, they really freak me out (I also had problems with eczema when young).

affinityvet Mon 01-Jul-19 08:12:54

I sympathise will all suffering from this condition. Mine has recently started and is still fairly mild. I find washing the area in cool water and applying Eucerin Intensive Lotion usually helps.

Greyhound22 Mon 01-Jul-19 08:18:04

Nothing useful to add but my DH gets this and looking at this I can't believe they've never done anything for him. He gets told to take antihistamines. It's worse when he gets stressed but can last for weeks.

Blahblahblahyadayadayada Mon 01-Jul-19 16:41:51

Greyhound I think he could ask about being referred if he has been taking antihistamines for a long time.

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