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.

I had them constantly for around 18 months. GP couldn't find cause, got referred privately through work to see a dermatologist in Harley Street. By then I was pregnant and they just vanished. Dermatologist just told me to be glad and cross my fingers they didn't come back. Couldn't tell me why they started in the first place. She also told me to take triple the normal dose of anti histamine if they come back which seems a lot.

Mine were definitely worse during stress or heat. You have my every sympathy and I just wanted to wish you good luck for the future and finding a cure

I had horrific hives five years ago. GP several times. Saw a consultant. No one did anything that helped.

I was covered in the things. I'd get them anywhere, on my trunk, legs, my mouth even swelled a few times, which was scary.

I don't know what made me think of it (certainly no one medical suggested it) but I bought an over the counter thrush pill. The one dose one. It helped. So I bought 3 or 4 more and took them daily for a week.

Hives gone. Totally. Completely. Never to reappear.

I was so angry with GP and consultant. Surely they should have suggested thrush could manifest this way?

Thinking about possible triggers may be useful. Others have mentioned heat but my daughter gets them when cold or after a virus.

It wouldn’t surprise me if stress were a big factor

Omg, @Joswis - that's a fantastic idea, I once had thrush so bad they actually thought it was an allergic reaction, and started me on steroids. It was only when we got results back from std testing they realised it was candida! Not explaining enough, but I agree it's a good idea to try.

I had these for about 4 weeks and I was utterly miserable during this time, my sympathies OP.
I got rid of flowers and any other allergens I could think of. The only thing I was left with was thinking it might be due to taking ovex, one of the kids had threadworms and we had all taken a precautionary dose. I found hives listed on the possible side effects.
All the best OP, I hope they fade very soon.

Allergies are an autoimmune response. If you’ve had them that long you may need prednisone, a steroid. I had hives for 8 weeks and it turned out a medication I was taking was causing it. It took another 6 weeks after stopping for the full problem to resolve itself and that was with steroid help too.

For the itching get a menthol type moisturiser, distracts you from the itching. Even temporarily

I'm already on prednisone. It sort of helps but also makes me feel really ill.

Urticaria is awful, I've had it for three years so you have my upmost sympathy. I tried many things, changing mattress, washing powder, diet, anti histamine, but the one thing that has helped me has been Xolair. This is a set of two injections monthly but having been on it a year with breaks I can safely say that it has been a game changer. If you are on Facebook there are also support groups which offer help and understanding. The thing with chronic idiopathic urticaria is that it's idiopathic and often no cause is found. My initial trigger was a stress point, a one event and I can pinpoint it back to then but even with lifestyle changes I was still getting the hives and swelling. It's hard and I think you have to find a dermatologist or allergist who knows a lot about the condition to get the right help.

You really shouldn't need steroids all the time if you can get on a regime that manage them more effectively. I only used the steroids for a few days here and there eg: accidentally taking ibuprofen which cause a big flare up.
Talk to a consultant about off licence amounts of the anti-histimine fexofenadine (mine was x2 twice a day) + 10mg montelukast and doxepin which was effective most of the time. Added ranitidine when I felt then coming on. Gradually removed doxepin and the others over time.

Saw a private consultant in Harley street Malcolm Greaves who could do all this off-licence prescribing and then taken over by NHS consultant who kept it going. There is hope!!

Hi op

GPs are totally useless, as are (most) consultants unfortunately.

For me, the ONLY thing that ever worked was taking Zantac (ranitidine) and Zyrtec (cetirizine). You must take them together or they won't work. There aren't any long-term effects I know of, unlike steroids.

Hi OP, you have my sympathies.

Have you had a Covid? Not the same and total Anecdata, but my son has daily hive type histamine reactions now, as what seems to be a post Covid thing. They flare up, aren’t itchy, and go fast, so luckily not hard to deal with but he is having them in reaction to to things he didn’t before, and to stress. I haven’t found out much except it can be a post viral response that sorts itself over time. Not very helpful with your severe version, but hopefully it could clear over time.

Really hope you feel better soon.

I am just on fexofenadine x2 a day for it. I’m on other meds but they aren’t for the hives.

I already take a massive dose of fexonfenadine for them. I think I feel worse due to the steroids tbh. I'm due to come off them in 10 days time so I wonder if that will help.

@Beecham -there was a worldwide recall of Zantac in April, when did you last get a see your doctor for a review?

I realise I don’t know your situation, but just thought I’d mention it!

My husband has had this at various points in his life. It is currently settled but he does get itchy all over. He finds a daily antihistamine works- he is on Loratidine.

When he was really bad and nothing seemed to help, a GP found something about taking Ranitidine alongside his other medication (I think is was Fexofenadine?) can stop urticaria. I don't know if you can still get adult Ranitidine but may be worth investigating as it defines helped.

Sorry just went to check, the daily antihistamine is Cetirizine. But there is definitely something with Ranitidine working alongside other medications for urticaria.

I have just googled that there is no current licensed alternative to Ranitidine that works the same way.

Yes, but you can't get ranitadine any more. (I took them together for years and agree it works but the ranitadine recall has led to a shortage of other H2 blockers so you can't get them. Famotidine and Cimetidine are the other ones if you want to ask your doc OP - an H2 blocker taken with Cetirazine helps a lot of people).
My personal issue is no where near as serious as yours but seems to fall best under the category of HIT/histamine intolerance/DAO deficiency. There's a lot of people on histamine intolerance forums suffering similarly to you, some good advice plus lots of junk science and bad advice or confused diagnoses. I'm now taking a DAO supplement before each meal and it's working for me (but mine isn't autoimmune and I have many and numerous food triggers).

Hi Itchy, you have my sympathies, it's an utterly horrible disease. I don't think it's taken seriously enough and is too easily dismissed. I had a couple of very similar episodes a few years ago, triggered by a flu-like virus that caused a massive immune flare up (crippling reactive arthritis, followed very swiftly by hives all over my body which stopped me from eating, sleeping, working. Truly awful.)

I had similar treatment as Itsmymess - mahoosive off-licence dose of fexofenadine (chemist never had enough in stock & even half a prescription filled a carrier bag!), montelukast & doxepin (which had the added side effect of sedation, which really helped me to sleep). I dialled back on the latter two and stayed on fex for a while. The combination was miraculous, and from memory it worked almost immediately - definitely nowhere near two weeks.

I only got access to those drugs via a private dermatologist - my GP was happy to refer me on the NHS but said it would be months before I got to see anyone. Once he'd prescribed and written to my GP all my prescriptions were on the NHS after that.

One thing I remember the dermatologist saying was that there are a gazillion antihistamines out there and if this combination didn't work then there were other options.

I would bang down the door of your doctors - you shouldn't have to suffer, and 2 weeks is long enough to know that your current dose isn't working.

NB my hives have never returned. They weren't triggered by stress, heat, medications etc and after two episodes after the virus, touch wood I've never had them again. Appreciate yours may have a different cause but the 'thunderclap' type (as my dermatologist called it - ie no previous history, came on hard) apparently tend to go away and not come back.

I've had this on and off since my teens and have tried every OTC available and generally a mix of loratadine and cetirazine works(or whatever was on the market over the time) Dermatologists couldnt isolate any root cause.

I've found that nothing really helps, I just have to ride it out but the pills take the worst of the itch away.

@lborgia That does ring a bell about ranitidine being recalled, I hadn't realised it's still out of use. I don't currently have hives, but I did have CIU for around 15yrs when I was younger. Sorry if I gave out of date advice. (I'm now extra worried about them coming back if I can't take ranitidine, as that was the only thing that worked for me, alongside Zirtec.)

My DD has had chronic hives for a couple of years. We have found that certirizine x 4 (two morning and two evening) work better than fexofenadine.

My DD has never had steroids, and I wouldn't want her to be on these long term if she can manage without. She is waiting for a referral for the injections which will hopefully get rid of the hives - omalizumab (referred to by PP - marketing name Xolair). Press your Gp for referral if your hives are not controlled by high dose antihistamine, although they may try to add another type of histamine blocker first - usually ranitidine.

I should say that my DD's hives have receded recently, and most cases just resolve in time (she also had hem for couple of years when she was younger and they eventually vanished).

Oops, didn't realise about ranitidine. Must remember to rtft!

Have you been checked for Coeliac disease?

www.coeliac.org.uk/information-and-support/coeliac-disease/dermatitis-herpetiformis/

Yes, checked for coeliac although I don't think it was ever going to be that as I've no other symptoms, it follows no pattern WRT food and I've eaten gluten my whole life with no issues.

I'm sure they're right and it is stress related. I've had multiple major stresses over the last 10 years including death of parents, employment tribunal, abusive relationship, redundancy and other things. Unfortunately current stress is mainly financial due to pandemic and can do absolutely nothing about it.