Chronic Urticaria - I'm miserable

[DysonSpheres]

So around 3 months ago I started experiencing sudden swelling of my face (lips especially, cheeks and eyelids) and then I became covered in urticaria rash. I am finding it difficult to breathe as it seems to be affecting my lungs. It actually feels like my lung capacity has been reduced. I run out of breath after talking too long or trying to walk or do activity in the house.

Put on a mega dose of antihistamine by my GP but although that helped stopped the urticaria, from appearing, it's done nothing for the facial swelling and my breathing is still hard.

I have an allergy appointment on the 18th November but the NHS must be struggling because its only a telephone appointment. I don't know how I'm going to manage till then. Trying to sleep is a nightmare and despite antihistamine before bed I wake up with swollen lips and tight throat.

I was alright, but it's really starting to get me down now. It's facially disfiguring and I don't like to go out, if I can avoid it. I've received no other help. Anyone gone through this or has any advice I would really appreciate it.

I was assumed to have chronic urticaria for a very long time, and I knew it didn't fit. Was eventually diagnosed with a (weird) rare allergy (omega-5-gliadin, a protein in wheat gluten) last year. Not a hive since. Your airways/breathing problems need to be taken seriously.

I also have a friend who developed coeliac disease after a severe viral infection!

Wow. That's insane. Mainly people think you're crackers when you make the association. I've found my people!

I had chronic urticaria for 17 years. I ranged between 5 and 70mg of prednisone a day. I was covered in hives and had several visits to the ER as my breathing was constricted.
I knew artificial flavors was a trigger as well as red wine, crisps and sugary cereals.
About 6 years ago I had noro virus and didn't eat for 3 days, nor did I take my prednisone. I also had no hives. I stopped taking it, and (touch wood) haven't been on it since.
I often wonder was it gone before the norm virus, but I have no way of knowing.
Hope you can find something that works. It is a horrible thing to experience.

I had this triggered by a viral infection. The angio-oedema ( lip, eye, hand, genital swelling) was particularly horrible. I took industrial quantities of fexofenadine - but the thing that made the main difference was avoiding histamine in foods - particularly charcuterie, nitrites in bacon etc. After 6 months it went away, and hasn't come back even having stopped the antihistamines and reintroduced all foods.

I hope you recover too, it's a really distressing thing to live with.

My daughter has chronic urticaria.. she was diagnosed with systemic mastocytosis.. it was a skin specialist who thought it might be this and order a bone biopsy .. rare disease but urticaria is a symptom.. it's a mast cell disease, quite rare but is often difficult to get a diagnosis

I had this too and was taking antihistamine every other day. The first time I had it it cleared up after I had a cold and stopped drinking milk. More recently I noticed i started again when I stopped taking iron tablets so I started those again and iyt stopped - could be coincidental though.

What foods have histamine in them?
You've blown my brain to bits.

Hi Op I absolutely understand your misery. I’ve suffered on and off for 15 years with chronic idiopathic urticaria. Thankfully mostly off.
my first flare up lasted around 6-8 months. Literally big red welts all over my legs and body. I experimented with different antihistamines and my GP wasn’t especially useful and found cetirizine worked briefly. I’d also sit with bags of frozen peas on my legs and ice packs.
Then one day it just went away. I had another flare about 3 years later but much less severe. I have the odd flare up now and again but it’s mild enough to cope.
I believe mine is autoimmune as I was diagnosed with rheumatoid arthritis about 10 years ago. It’s all linked maybe worth looking into as there are many autoimmune conditions.
In the meantime id suggest trying a few different anti histamines and see if one works better.
it’s so tough, you have my sympathies.

Bellabluea. One of the conditions I was starting to get before I read that book (that I haven't finished!) was joint pain and swelling (in knuckles).

Try that book. I don't tend to peddle quackery. Worth a shot!

You have my complete sympathy op. I suffered from this a few months ago, lasted a month and I was at my wits end. I have coeliac and do get Dermatitis Herpetiformis if I'm glutened but that's in a specific area always (ok, it's my left buttock). This was my entire body, even my scalp and eyebrows itched. After scratching there would be a little hard crystal like lump that would fall off. Most disconcerting. I ditched the Persil for Fairy, no change. Hadn't done anything different at all. And then I read on line that Magnesium Citrate can react with phosphate and produce itching and crystalised bumps on the skin. Bingo! I take magnesium Glycinate every day with medication (advised by my consultant). Had run out and was taking Magnesium Citrate. Problem solved overnight.

I know it's unlikely you are doing the exact same things but I do wonder if there is some tiny new adjustment to diet/medications you haven't thought of?

On another note, my ddad took horrific itch after his Moderna booster. GP declared it eczema, onset aged 80. Yeah right.

The book explains about histamines btw. *Disclaimer - I'm sure other books exist!!!

I have this, hives everywhere for no apparent reason. My skin can weep and blister as well. Fexofenadine 3 x the usual amount twice a day, bicarbonate of soda baths, epiderm cream all help me. It is awful, I itch so much that I can bruise myself scratching.
It flares up if my immune system is low so I have to be careful. If I get a bad flare up it can take months to get on top of it but taking loads of fexofenadine helps.

I had similar, but no swelling - just itching, and sometimes redness/dermagraphia. It flares up at times and everything sets it off, and then other times, it's fine and I can use the same products with no problems, which makes it very hard to find out if there's a specific trigger. I tried avoiding milk for a while, but didn't make any long term difference.

I was prescribed 4x cetirizine, but it ended up making my kidney (I think?) results a bit odd, so I've gone back to 1x cetirizine, and 1x fexofenadine each day.
I also have Monteleukast daily.

I used to have Ranitidine, as it was an H2 blocker I think, but no longer available and I haven't found an alternative, so just managing without at the moment.

I also have bought separately myself Dymista and Beconase and another nasal spray, either from the chemist or from an online doctor/pharmacy, as there are times when exercise sets it off very badly, both itching and also nasal symptoms (dripping and sneezing, to a really extreme level).

At the moment it is generally under control regarding the itching; mostly under control regarding the redness, but I do still get times when my face/neck blotch terribly for a while (often just half of it, which looks very weird!) but as long as it doesn't itch/swell, I can live with that I guess. Dermagraphia under control at the moment as well. The only swelling I really get is around my eyes, and that's OK for now, but I tend not to wear any products on my face any more to make sure.

good luck trying to find out the right combination for you. I had to specifically ask the GP for both fexofenadine and monteleukast, on the advice of the dermatology consultant.

I don't know the level of medical knowledge of most of you reading this thread but my understanding of histamines and anti-histamines is this.

Histamines are 'things' in the body which produce an inflammation response to 'alien' things in the body. So they essentially surround the alien and kill it when they detect it. They are your foot soldiers. Your infantry.

The problems occur when the body detects perfectly peaceful aliens in the body and surround them to attack them and kill them. They regard dust as aliens. They regard eggs as aliens. (I'm pretty sure they vote Tory too).

Histamines protect you generally.

Until...................

they start protecting you from what they perceive to be threats to your body (terrible threats such as foods, or even your own cells) and so they surround and kill these friendly aliens or even the natives! (Yup, they're definitely Tory voters).

When your histamines can't distinguish between enemies and friendlies, that's when the shit hits the fan.

If there is a doctor in the house - they might explain that better. That's my layman's understanding of it though.

A link between covid or even the vaccines wouldn't be entirely into insane territory really. They both affect your immune response and thus how your histamines behave?

I really would love if a doctor might be in the house somewhere to comment before the doctors in white coats haul me off the board 😂

I have chronic spontaneous urticaria and cholinergic urticaria (26 years now) and started Xolair injections. It's been a miracle drug, I can exercise again
Posted these on another thread but here is with and without Xolair

I get the same, I can literally feel it coming on like a burning and then intense need to itch (I try not to as it makes it worse).
Any pressure on my skin brings me up in hives as well,I was covered last year from just putting up the Christmas tree which is artificial.
It's funny but wood brings me up the most, even my daughters bunk bed while changing the sheet.
Not found anything that actually works so far, antihistamine helps a bit but not 100%.

Was it a kidney infection ?
I also came up in hives on nitrofurantoin, when I had a kidney infection, and I still don’t know if it was the drug or the infection.
Not all that long afterwards I developed chronic urticaria, but I had just been put on thyroxine and thought it might have been the trigger. It lasted for about a year then went away.

I think that that is in fact what they prescribed it for but it actually developed into sepsis for a while and they changed the antibiotic but the rash remained for a couple of weeks. I also had oedema in my legs (so fluid build-up). Again, I'm not sure whether it was the infection or the antibiotics which caused the reaction.

I have had chronic spontaneous urticaria since November 2020. I'm not allergic to anything, just autoimmune. I'm on seven antihistamines a day, and despite six of them being non sedating am tired alot of the time. Because it's autoimmune I have had six covid jabs!. Having done a lot of research on this I asked to be given a very expensive series of injectionsof a monoclonal antibody and the funding has finally been approved, I get the first tomorrow. The itching is worst at night, taking iceblocks to bed helps, also menthol cream is better than the steroid cream.

I've never been prescribed that antibiotic before (had never heard of it) so I really don't know much about it.

I also developed an allergy to penicillin in my 30s. I had previously had oral penicillin on numerous occasions with no reaction whatsoever. On one occasion however, I reacted really severely to it when it was given to me IV.
When you're allergic to penicillin they are limited a little in terms of antibiotics they can use.

Nor am I, in my own case. A friend mentioned that hive reactions are common with kidney infections. I was put on another , unrelated antibiotic and again broke out in hives .
It is frustrating as I would like to know whether I should totally avoid these two antibiotics in the future, or whether it was a consequence of a kidney infection.

I had the same question for my GP and she said to be on the safe side that she was putting it on my notes as an allergic reaction to the nitrofurantoin.

@TheNosehasit ill take a look. I am actually a hospital biochemist so I like anything with a scientific basis and sniff out quackery pretty easily.
inflammation is a massive problem and I’m having gastro symptoms now. I’m vegan so my diet is dairy free and I’m living on potatoes as salad flares me up!

I'd really be interested if you'd come back with an opinion. I don't buy quackery either (too many in the medical field in my family lol). That's a genuine request.