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Chronic hives please help

64 replies

ItchyMcItcherson · 07/11/2020 11:31

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.

OP posts:
hotchocdrinker · 08/11/2020 17:18

I had this, though it was under control with 180mg fexofenadine daily. One day I forgot to take the tablet and it had just disappeared overnight. I had it for two years. No obvious cause.

qate · 08/11/2020 17:25

I had this - came on virtually overnight a few months after DC1 was born, and got so serious that I ended up in A&E one night due to swollen face/lips. They ran allergy tests but couldn't identify anything - in the end they concluded that hormonal changes from the pregnancy had most likely caused it. I ended up taking Xyzal (up to 4 tablets a day depending how bad it was - was breastfeeding so often limited the tablets). In the end, it went away almost overnight as quickly as it had started (probably about 4 months after it started, I would say). I was incredibly miserable when it was going on - still no idea what started or stopped it. Just had DC2 so hoping that it doesn't happen again! Hope yours resolved as quickly and randomly as mine eventually did.

thegirlwithkaleidoscopeeyes · 08/11/2020 18:09

Another who has suffered on and off since teens (my my would say since I had glandular fever!) so over 30 years. My previous chronic bout was triggered by a particularly difficult year and lasted about 5 years. I was then clear for about 3 years until 12 months ago. Currently being investigated for urticarial vasculitis as the last few flare ups have been far more exciting than when it was ‘just’ hives!

My experience has been that the GP thinks it’s just hives and I’m making a fuss. I have been in tears on phone calls and actually, the GP has never seen me mid flare up due to phone triage and ‘just’ hives. The hives are now accompanied by swellings/oedema, sore joints and flu like symptoms.

Eventual referrals to dermatology who were amazing and gynaecology (less helpful) resulted in a cocktail of antihistamines, creams and potions to treat the symptoms during the previous flare ups.

I’m now under immunology due to somewhat extreme flare ups that have resulted in visits to minor injuries! Immunology have been fantastic in trying to get to the bottom of what is going on and suggesting various treatment plans depending on what the next diagnosis is.

Interesting that a PP said about thyroid, I’ve been on thyroxine for about 15 years and was diagnosed 12mths ago with B12 deficiency as well. I think my immune system is on some kind of self destruct setting Sad

I hope you can find some relief op

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Foobydoo · 08/11/2020 18:15

DH had this a few year ago. He had hives on chest back and neck daily and several times his face, eyes and lips swelled up.
He was prescribed fexofenadine which only helped a little but apart from that was fobbed off. No allergy tests or anything.
After aprox two years they went on there own he stopped the fexofenadine. Occasionally when stressed he think he can feel hives coming but they have never come back significantly.
With hindsight we do think they were stress related.

QueenPaws · 08/11/2020 18:15

I also have hashimotos recently diagnosed so definitely interesting. On 75 of levo now
Mine generally look like this (cholinergic urticaria)

Chronic hives please help
RyvitaBrevis · 08/11/2020 18:27

I had this and it went away. I had it badly for a few months, then a period of maybe 1 year with occasional flare ups of decreasing severity, and then nothing. I was taking huge quantities of fexofenadine at one point - ask if you can occasionally take extra when things are really unbearable.

I am a generally quite allergic person but they couldn't identify what was causing the urticaria. Maybe stress. I'm sorry, it's a terrible thing.

ItchyMcItcherson · 08/11/2020 18:52

Its so debilitating. I can't see how i can possibly work with them like this. GP was so incredibly blase.

OP posts:
user1471441632 · 08/11/2020 18:59

Mine developed after an allergic reaction to nurofen and all non steroidals and went after 2 years. The only explanation was a massive release of cortisone in my system as nothing could be found with the dermatologist. It was worse when I got stressed or warm. Aveno cream and oats in my bath( in a bag under the tap ) helped too. Taking an antihistamine daily also helped.Flowers

ItsAlwaysSunnyOnMN · 08/11/2020 19:30

I used to often get a flare up definitely connected to stress

I found cutting right back on dairy helped (and I drink a lot of tea) And totally cut out yogurt (I used to eat a lot of yogurt)

I’m fine having dairy at other times

The ointment (looks like vaseline ) was really helpful but can only get on prescription

grannyjacob · 08/11/2020 19:59

Hello, I'm the one who messaged you early this morning. My CIU started what appeared to be literally out of nowhere 17+ years ago. I started to itch, and within minutes my entire body and limbs from my neck down inclusive was covered. Within another few minutes, I was coughing, felt like my lungs were filling up with fluid, feeling nauseous, had a headache. I was very scared, but live five minutes away from a major teaching hospital, so phoned a taxi and went along (in retrospect, it should have been an ambulance, as I was told later).

To cut a very long story short, I was in/out of A&E every day for the next four days with exactly the same problems, plus more including actual vomiting, diarrhoea and fainting. The hives appeared on my face (plus everywhere else) on the third day, my eyes and lips swelling so much I couldn't see or speak properly. I was given steroids, plus anti-histamines and each time was told "that should be it", but was kept in overnight on the fourth occasion ( but only after my daughter basically threw a strop I didn't know about that until days later, was mortified).The next morning, I was seen by a consultant Dermatologist. She took a full history, going back several months. She basically scoffed (very politely) at the treatment I'd had over the weekend, and said that I should have been seen by Dermatology after the first day.

She prescribed big, slowly decreasing doses of steroids plus antihistamines, plus Epi-pens. She also recommended that for the next few weeks I try to eat only "white" food, e.g. rice, steamed chicken, bread, all organic if possible (by this time, I wasn't eating at all, only drinking water). Her tentative diagnosis was that I'd possibly developed an allergy to colourings and preservatives, plus possibly because of my age all the fruit and veg I'd eaten as a child and young adult would have been sprayed with goodness knows what. She described it as a pseudo allergy, linked it to my immune system, said it appeared that some people, although allergic to nothing specific, reacted when certain foodstuffs were eaten together. She also said it would take weeks for the reactions to stop, but hopefully they would get less severe within a short time, which they did.

I can't remember how long it was before I had a day totally free of any problems, but it was at least five months. I was by then, a Dermatology out-patient, and was seen every three months for several years, eventually being discharged after having had no severe attacks for over a year, and was discontinued from having to carry Epi-pens.
I've been on various different anti-histamines, eventually settling on Fexofenadine plus Ranitidine, but due to Ranitidine recall/shortage earlier this year, was changed to Cetirizine. I'm also on Montelukast although that was prescribed for my asthma, and Levothyroxine for an under active thyroid (all ties in with the immune system theory). I also have a form of alopecia, again immune system related. I still watch what I eat, avoiding obvious colouring, etc. I still have the occasional mild attack, but the hives now (usually) only appear on my chest, I get itchy around my eyes and mouth and I always cough for a while. I find taking a couple of Piriton (as agreed by Dermatology) helps the reaction to settle more quickly).

I would agree that probably a lot of GPs are not particularily clued up on this sort of thing, the first one I saw (for somehing different) later that year admitted they'd all been "fascinated" by the report from Dermatology, as none of them had seen anything similar (up to then). I've resigned myself to accepting that I'll be on anti-histamines for the rest of my life (I'm 66). I genuinely don't think mine are stress related as such but attacks are bloody stressful to say the least. However, I was peri-menopausal when I had my first attack.
Sorry for the length of the post, but felt it was all relevant. Hopefully, Op, your attacks will start to settle soon, but meanwhile you have my complete sympathy, as does everyone else who's contributed to this thread.

ItchyMcItcherson · 08/11/2020 22:02

Thank you so much for all your supportive comments. I've read them all x

OP posts:
dameofdilemma · 09/11/2020 17:08

Yes. I suffered for years (trying anti histamines, dietary changes, various miracle creams etc) then the GP referred me to an excellent consultant who sensibly put me on immunosuppressant medication.

Wish I’d done it years ago.

Suzy55 · 27/11/2020 22:10

Have any of you tried famotidine?

ThaiDye · 04/01/2023 05:28

@ItchyMcItcherson this was a long time ago but how are your hives now? Did you manage to get rid of them?

I started getting hives in August for no apparent reason and a course of acupuncture helped (went from needing zirtec every 24 hours to every 3 days) but after letting the acupuncture lapse I am back on zirtec every 24 hours. So am trying acupuncture again.

If you managed to get rid of them (I hope so for your sake, the itching is unbearable) please update us on what worked. Thanks!

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