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.

DH has chronic idiosyncratic urticaria. He doesn’t get swelling but has redness and itching.

He’s had it for years. The hospital did an allergy skin test and every test point flared up. From experience he’s noticed that his gets worse around dust and handling cardboard. Showers would also cause a flare so we switched his toiletries and washing powder.

He takes Fexofenadine daily and was gives an emollient cream. The cream did nothing really, just soothed a bit of the itch. The tablets help but don’t stop it.

A researcher came to the house to interview him as part of a study on it about 8 years ago but we never heard anything and there doesn’t seem to have been any progress in treatment options.

The Dr seemed to think that it would be one of those things that improves with time. His was sudden onset as an adult and over the 15 years he’s had it, it has vastly improved. To the point where we notice if it flares up and comment on it. Before he had so many red marks on his face, neck and arms that we got used to it.

Sorry I can’t give you anything more encouraging but didn’t want to read and run when another experience might help.

Thank you @BlahBlah36 I really appreciate you sharing your DH experience and taking the time to reply, I'm sorry he's experiencing it too.

Interesting his doctor thinks it will improve with time. It does give me hope that it settle down, at least!

I have had this happen before, but very mildly - no rash just the swelling which was really subtle and it would last a few days then disappear. Had other allergy symptoms like sinusitis also but got tested for tree pollen and nothing showed up.

I'm definitely getting an increase in breathing issues around dust but a few weeks ago I covered everything in plastic (books, sofa, clothes) and am vacuuming daily and there's still no change and I'm still finding it difficult to breathe outside in the fresh air. I'm at my wit's end!

Op I'm in a similar boat. Took it about 3 months ago.

I can't figure out what is triggering it instantly I blamed soap powder but now I'm not so sure.
Reducing milk / dairy products seems to help or but it might be hormones. Seems worse at certain times of the month.

I've suffered from the same on and off since I was a teen. Was tested for allergies and nothing obvious was found. I find though that it gets worse when I'm tired.

I self manage these days depending on the severity with loratadine and cetirizine which manages the problem but will need to go back to the GP for the odd occasion that my throat swells up - that bit is definitely scary!

I had a similar reaction to an antibiotic (it was called nitrofurantoin). The rash did go but the GP prescribed a body lotion called Cetraben which worked well along with the antihistamines.
You weren't on antibiotics when this started?

GP has told me to list that antibiotic as one that I'm allergic to (though I'm not convinced that it wasn't the infection which caused the symptoms rather than the antibiotics).

What dose of antihistamines are you on?

Could you get someone else to vacuum while you’re out of the house? Only using the vacuum can disturb and kick up the dust at you which might be exacerbating it. Might be worth a try.

DH’s has definitely improved over the years so I hope that you will see similar.

Interesting that you mentioned sinuses as DH was diagnosed with allergic rhinitis last year. He has a nasal spray he takes twice a day. I wonder if there’s a link.

His Dr seems to think it’s an overactive immune response. He’s rarely ill and if he does catch a bug he’s better in days.

Trial and error is the way forward I think. Cutting out or changing products one at a time to see if anything improves.

Try cutting out egg btw (it's in a surprising amount of things).

If that works, I'll tell you why I'm suggesting it. 😆

That's a point about soap powder @Dinoteeth I haven't changed mine. But of course I should.

I buy it in advance and have two huge boxes left. It didn't cross my mind. Alright going to take a break and change it to Fairy or something for sensitive skin. Already use the Fairy fabric conditioner anyway.

When it first happened I was drinking oatmilk so I don't know about dairy, but it can't hurt to drop it for a week and see if there's any improvement. God I hate this.

I'm so sorry to read this. I've got chronic idiopathic urticaria and it's life destroying. You don't know when the next attack will be so are always on edge. Mine is triggered by foods (don't know which ones as I've had countless tests done and no allergens have shown up) and a million other things. I've tried every antihistamine under the sun and the only one that works for me is Fexofenidine- a double dose. In the mean time, I'm left with dark pigmentation on my skin where I've scratched so much, my skin weeps. I must admit, I have more attacks when I'm stressed so maybe it's worth keeping a diary of 'before-during-after' you have an attack to share with your consultant when you see them? No answers but lots of solidarity. Hives are a bitch.

A good way to distinguish between environmental allergens or internal (or food) allergens is to shower (using something like that Cetraben) when the symptoms start. My theory is that it washes off the external things like dust/pollen. Don't use soap or you'll make things worse. Apply the moisturiser about 3 times a day. The hot water/steam also can clear out the sinuses and lungs a little and help with facial swelling. A douse of cold water on your face after can help too.

If that's having no effect, then my theory is that it's more likely to be something you're eating/consuming (assuming the GP has ruled out other causes such as liver?)

@TheNosehasit No I wasn't on antibiotics when it started, but it's interesting I did have a course of antibiotics in March for a secondary infection after catching covid and I didn't feel good afterwards. I started reacting to it pretty much straightaway with an itchy rash and couldn't take the entire course was advised to stop.

I wonder if it's thrown off my system in some way, but it was a while ago.

That's interesting.

The reason I mentioned the egg as I happened to overhear a snippet of a conversation between two doctors in A&E (unfortunately I missed the whole convo and wasn't in a position to follow them to listen in haha).
They were discussing a patient who obviously had some reaction they weren't quite able to determine the cause of. The bit of the convo I head was this

"I've got a theory actually"
"Go on"
"You know how some people sometimes develop an allergy to eggs after some viral infections?"
"yes"
"Well I wonder whether this could be something similar and that she ........................................" and by that time they had passed me by. 😄

I felt like I was left with a cliff-hanger haha. I wanted to wheel myself and my drip after them to find out the rest of his theory.

apols for typos and random missing words.

I guess eggs, dairy and wheat are some of the main allergies.

I noticed it was better when I didn't have cearal for breakfast but I could be up the wrong tree and it's the cearal rather than the milk.

But people can become allergic to anything at any point in time often in 40s.

Id bough Daz after using Persil non-bio for years. So I initally blamed it but now I'm not sure.
It was fairly settled then we went a way for a week and I'm back to square one.

@TheNosehasit It's a shame you couldn't follow them!

So people can develop egg allergies after viral infections? That's interesting. I hardly eat eggs though, but as you say they are in different products. And I guess covid might have made me sensitive to stuff.

Sounds awful OP

Have you tried an air purifier to see if anything changes?

Check Amazon for air purifiers
I have a Levoit one (cost approx £130)
it takes all the dust, pollen, dander etc out of the air

I dont know how to send a link sorry but have a look at amazon reviews to see what other users say

I hope this help

@dottypencilcase I'm so sorry, it sounds awful. It is horrible and relentless and you don't know when the attack is going to come. I get this itchy feeling around my lips and then I think 'oh god here it goes again' then my lips start slowly puffing up.

I have been stressed. But it seems my brain isn't getting the signal that I'm alright.

Forgot to say my daughter had the same as a child and we discovered it was certain fruits.
eg strawberry was fine , apple was fine but both together would set it off

I also bought a book (well, the Audible version) called The Inflammation syndrome.

As well as that rash etc., I developed a lot of consecutive inflammation-type symptoms. Costochondritis, then plantar fasciitis.

I was going a bit insane and was bouncing ideas around and the inflammatory nature of all of them bothered me.

Inflammation Syndrome This is the book

I haven't finished it as by the time I had implemented the suggestions in the first few paragraphs, all the symptoms vanished (although they're back again now so I'll have to start again).

From memory, these are the things suggested (the ones I started on).

Turmeric with black pepper (piperine (?) is in black pepper which aids absorption of the turmeric). You can buy those in Poundland bizarrely for £3.50, though they're not always there. Otherwise Amazon or Holland & Barrett would have the ones with both the turmeric and pepper in.

Omega 3 and 6 (I don't tolerate those well though so didn't use them)

Vitamins B, C, D and E (high strength).

I honestly couldn't believe it that it worked!!!!!!!!!! I have no proof. I must finish the rest of the book actually. I'm sure you could get it from a library. Worth a punt!

He goes into a lot of scientific explanation of his reasoning behind the suggestions, so the audiobook suited me as I would have been bogged down by the detail if I tried to read it. Depends how you best absorb info I suppose.

OP I went through years of this 3 decades ago. GPs were useless. Found after paying a fortune to a top allergist I was severely allergic to the dessicant in washing powders, laurel sulfate, several disinfectants and carpet shampoos. I started using hypoallergenic laundry liquid, washing up liquid, no conditioner. I use a laurel sulfate free shampoo (baby shampoo is too harsh) and things calmed, but did not totally disappear. I avoid food high in histamine as they too are a trigger. I am prescribed fexofenadine which I still take daily. After several years I was finally referred to a rheumatologist who diagnosed lupus. Please fight to get an answer and some help.

I feel like putting up a notice in the hospital

"could the two docs discussing egg allergies after viral infections please finish the sentence you started with I wonder whether....." 😆

I was also referred to rheumatology! It was my request. Haven't had the appointment yet though and all my inflammatory-type conditions have gone mainly!

Correction

I haven't finished it as by the time I had implemented the suggestions in the first few CHAPTERS (not paragraphs).

Have you been checked for Coeliac disease? Dermatitis Herpetiformis is often misdiagnosed and your tiredness certainly fits with Coeliac.
www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/what-are-coeliac-disease-symptoms/?&&type=rfst&set=true#cookie-widget