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.

There are chicks paying hundreds for lip fillers lol. Every cloud!

I am a bit worried though about the level of allergic reaction you're getting though. You need to be a bit serious about this.

Yes, I agree. Mine started as 'just' hives. Now I carry epipens as mine progressed to anaphylaxis (though atypically so nobody recognised it FFS).

I've had strong reactions on and off since my teens, often in response to a virus but the worst one was after a c-section and delivering twins. That one took 3 months to go and was so itchy I couldn't sleep despite being extremely sleep deprived already.

Another time I got a got a very bad reaction which the steroids didn't touch (they usually work) and then we went to Sri Lanka and it cleared up in a matter of hours! So, maybe you just need to go somewhere hot and humid for some Winter Sun.

You know I do think decent sun would help.

I think the extreme heat of the summer and the sudden change to cooler temperatures and dwindling daylight hasn't done me any favours. The change this year was particularly drastic and the summer temps of 40 was almost unbearable.

That's terrible Yarnosaur,

But I am surprised I am having to wait this long for an initial consultation and not been given an epi-pen either. Maybe I'm being a bit entitled. But I'm going to have to ask for one.

Look up the low histamine diet. Some foods are very high in histamine.

Try going gluten free, dairy free as well.

The brand is called Genestra HMF Intensive. We’re in Canada but I presume you’ll be able to find them in the UK as well. Good luck!

Hi Op, I've always suffered with allergies, hay fever, asthma but in approximately 2000 I suddenly started with angioderma and urticaria. I seemed to never react immediately, it was always 12-24 hours later and affected my lips, eyes, throat and joints and rash was everywhere. Drs weren't particularly helpful, just prescribed antihistamines but didn't refer on.
Eventually in 2008 I was referred to an immunologist who was brilliant. We found out (through a reduction diet) that my main triggers were apples, strawberries, onion and garlic - like a poster mentioned above the nightshade foods particularly triggered me. I'm also very sensitive to dust, pollen etcetc. The consultant also prescribed Fexofenadine AND Montelukast. I'm convinced that Montelukast was the game changer for me, it was originally an asthma drug but is a leukotriene inhibitor too, after 3 months of it then my flare ups stopped and haven't ever returned. I still get mild symptoms if I eat an apple - increased heart rate, shakiness but it fades after about 10 mins.
Montelukast for me was a life changing medication and I will stay on it for as long as I can. It also helps me manage my asthma. That being said though, it can have side effects and I think in the US it has now been 'black boxed' for increased mental health issues esp in children. I'm very fortunate that for me the benefits have far outweighed any side effects. I would absolutely recommend researching the drug and ask your GP if you can try it as I think it's now recognised/ prescribed for allergic reactions too.

Someone up thread said they'd been prescribed a steroid. Did that help?

I've been given a weeks course of them.

Steroids are anti-inflammatories but they are really only to be used with caution as they have side-effects which often outnumber the benefits.

Btw did any of you read the book (I think two of you mentioned it).

The other one recommended is Glucosamine Sulphate.

My chronic urticaria was made much better rhenium I followed a low histamine diet. Allergy UK have info on their website. It's hard to follow but it made my urticaria an occasional thing rather than a daily problem.

Ooof, the memory of urticaria after a C-section :( My legs were bleeding from scratching so much. Apparently they're a side effect of the spinal/epidural which I'm sure I didn't read on the sheet I was handed as I was rushed into surgery. And, my usual fexofenodine didn't touch the flare up.