Chronic hives please help

[ItchyMcItcherson]

Has anyone else suffered from chronic urticaria (hives)? In my 40s and for the past 12 weeks have had them, severely, every day. No history of allergies or anything. GP was useless and would only prescribe piriton but I literally cannot function with them so I saw a private allergist and dermatologist who have told me the cause is autoimmune. Bloods are normal but basically immune system is overreacting and producing too much histamine. For 2.5 weeks now I've been on daily 40mg oral steroids and the highest possible dose of fexofenadine. It is not making a difference. It gets better in the afternoon and evening but tends to be worse first thing, they start coming up after I get up. I feel generally unwell with them too (which might be the steroids). I cannot go about my life like this. I am thankfully furloughed right now but I dont think I would be able to work. I can't travel or do anything. My consultant just says it has only been a couple of weeks on meds and I need to give it longer.

Please, has anyone else had these and please, did they go away? I am panicking that I will have the forever. Which is not helpful as I am sure they are exacerbated by stress.

Not me but my DH did, and yes exacerbated by stress and eventually went away on steroids. They just appeared very suddenly for no reason we could identify, and went after a few weeks on meds. Very distressing, I’m sorry. I think he was told to avoid alcohol, caffeine, hot water (so tepid showers etc) and not get too hot and sweaty generally. Was a while ago now though.

They just don't seem to be getting better despite the meds. Its so discouraging

Hives are not uncommon in peri-menopause due to hormonal imbalance, so you may want to investigate that. If it is peri, the medicine you're using is all wrong. You would need HRT.

I do, I also got angio edema where my lips swell
up so I look like I have had bad Botox. Steroids and fexofenadine work for me but I still have flare ups when I am very stressed. Mine is mainly caused by physical stress. First lot was caused prior to being diagnosed with RA once that was under control it went away and then second time (still ongoing) were caused by a cancer diagnosis. I have seen an immunologist and he said they do go away spontaneously. Another one of my triggers is ibuprofen and the dr said that was quite common as well. Hopefully the medication will help for you soon.

I've been on HRT for a few years.

Yes, I've had them for 23 years. I've just been approved for Xolair, that might be worth mentioning
Ask about ranitidine (h2 blocker), and google NICE guidelines for urticaria as it lists options there

Your HRT might need to be changed.

Here
https://cks.nice.org.uk/topics/urticaria/management/managing-urticaria/

I take an off license dose of Zyrtec so 4 of those plus fexo

Your HRT might need to be changed

It has. I dont think it is the HRT. Menopause doctor didn't think it was either. She said hives caused by menopause are not usually as constant and severe as mine are.

I have heard of xolair but the side effects seem to be pretty horrible

I guess not much could be worse than this though

Yeah they're unlikely to give it so early on, it's taken years for me to get it. I'm virtually housebound now so they've agreed it

I cant cope with it. If I can't work ill lose my house.

You probably do need to give it a little longer. There is other options you can work through on the link so I would have a look through. Try not to panic, I know it's hard
Make a note if they are worse say after heat or a shower or a certain food
They can try combining antihistamines, there's beta blockers, different antihistamines, I was on ketotifen for a while

Just feeling so down about it and so frightened.

I had it on and off a number of years. Acute and chronic.
My consultant gave me huge amounts of fexofenadine off licence - way over the amounts listed on the pack. And we added montelukast which was very effective and also added doxepin
As it got back under control I eased off the dox and then the montelukast until eventually reducing the fexofenadine
I'm certain mine was triggered by SSRIs. It was then made worse by wine, and I even stopped being able to take ibuprofen as I got swelling of lips.

It's awful and you have all my sympathy.

I just get terrified there is some awful underlying condition they haven't found

I asked and asked and asked and nothing. Just idiopathic chronic urticaria.
I wasted a lot of energy worrying.

Hives are horrific. I had them once in response to antibiotics.

I am a long term sufferer of dishydrotic eczema. Eventually I started to eat a low hisamine diet, I was desparate. It is the only thing that seemed to make it manageable.

The other thing that helped was yoga, maybe it helped my body systems to better self regulate or something.

Wierdly I recently started an immunosuppressant as I have Respiratory disease and the residual eczema cleared up. This makes me think its related to the immune system and the strategies above might help you.

You need to look at stress and triggers as well.

You can cut showers down and wash gently- the temperature changes can be irritating.

Work on meditation, relaxation etc- don't say 'I must stop being stressed!' Obviously that doesn't work. You just build in to your day several periods of active relaxation. Deep breathing, yoga, whatever.

And avoid anything that gets you hot and sweaty- think calm calm calm.

I suffered on and off for 3 years until I went to an out of hours doctor who said push GP for blood tests there could be an underlying cause. For me that came back as Under-active Thyroid I have been on medication for 18 months and had maybe 3/4 bad outbreaks.
My GP was very surprised by thyroid result

I've had thyroid tests come back normal

Yes I’ve had this. It’s much better but still get hives if I don’t take the meds.

Are you on steroids Doc or just anti histamines? Being on long term steroids scares me.

I had them for about six months give or take and then they just disappeared and have never came back. That was about 10 years ago.

The only way I could cope was to cool them down with a cold compress and change when needed (few times through the night)
It took the edge of the itch and helped me get over to sleep.

It was my lower legs and feet that was the worst so I slept with a cold, damp towel over them.

I was only given allergy tablets back then. But I took them at night as that's when I struggled the most.
I also cut out a lot of sweet stuff as I found this made me itch more.

You have my sympathy too, as they were just awful.

If you're happy to post, what are your

• ana markers results,
• crp results
• tsh results

I'm so sorry, it is really really frightening, and yes can make you feel really unwell. Good that you got to an allergist, do you have any other symptoms, scratchy throat, nose, eyes, wheezing?

Keep posting, a and go back to your gp if you feel any worse. Meanwhile, download something annoying like headspace. Always irritating to be told it might be stress, but by definition cortisol rises when you're stressed, and you can train your mind/ body to react less. If you're home, persevere with 5 minutes a day of meditation/ relaxation app.