Please help :(

Hi, I'm really sorry that you are really suffering. I struggled and suffered a lot the first 1-3 months. Until I found things that can help. It's best not to allow the anxiety to panic you, there are plenty of things that can try and something will work. It's bad, but there are treatments. Even if it is chronic, it's usually time-limited. Ok, yes, it can be years, but that's less of an issue one you find symptomatic relief and accept and adjust to the condition.

Standard treatment is high dose non-sedating anti-histamines. But it only works for about half of people. I take quadruple dose Telfast, but to be honest, I don't find it helps that much.

Tried immunosuppresants (Ciclosporine and Mycophenolate). They worked well, although side effects were not good for me. There's also things like Xolair. If this is causing you a lot of suffering and anti-histamines aren't working, I'd go and see an immunologist ASAP to talk about treatments like immunotherapy. For some people Ciclosporine can cause remission. They might also look at whether there could be some other cause for the hives (e.g. medicine induced etc...). By the way, some medicines can exacerbate hives, avoid NSAIDs, especially Ibuprofen but also Aspirin. If you have to take pain killers at any point, take Paracetamol.

From the sounds of your post, sounds like a potential physical urticaria (triggered by heat? but I've met fellow patients where hives in bed were from pressure too). Although it's worth being aware that cold urticaria can sometimes not feel terrible until you warm back up. For example going from outside on a very cold day into hot central heated building, it can suddenly get furiously itchy as the skin comes back to life from being numb from the cold. When you go to sleep, you get cold so worth getting checked for cold urticaria. The physical urticarias often run in clusters (e.g. cold+cholinergic)

I find my hives are exacerbated by high stress, and anxiety, though that isn't the primary cause. Don't let yourself get into a cycle of anxiety about hives. That's not helpful. If the anxiety is really bad, I found Gabapentin helped with the itching and sleep as well as that worry. Before that, I had relief initially from Atarax (another anti-histamine) that is sedating but also helps with anxiety. Similar with Doxepin, which is heavier again, and Amitryptaline which is less so. Standard anti-depressants can help a lot with the itch-sensation and also anxiety hives cause too.

For me, avoiding the physical trigger (cold) and using Gabapentin for the itching worked best. Maybe you can explain to your wife about the physical trigger and the discomfort it causes you and manage the temperature changes in the house more gradually. Or turn down the radiator just in your bedroom? Look at making any adjustments you can.

There is also UVB phototherapy which can be done, which can also helps with Urticaria.

I identify with all your emotions, the thought of putting up with this hideous condition for years is hard to bear.

Mine is chronic, idiopathic, like most of the people on here, caused by a tooth abscess and strong antibiotics.I would wake up with huge rashes in various places, never the same place on subsequent days. Pressure would aggravate it, I had to stop wearing anything vaguely tight, including bras.

Xolair was prescribed and it disappeared overnight. I don't know what the side effects are and, seriously, I don't care. I live in France so it is covered on my health regime, if it wasn't it could have been tricky because it's expensive.

Try and keep calm, you will get a handle on it, and you have come to the right site for support.

Similar to above, before I first broke out with Urticaria, I had a chronic sinusitus for about 8 weeks. Felt better, then went outside and that's when the first outbreak hit. Took over a year to figure out it was cold, because initial inexperienced immunologist put it down to environmental or food allergies as my IgE levels were really high and skin prick test showed plenty of allergies.

Oddly, the sinusitus came back this summer. And this time through the ENT doctor, they traced it back to a wisdom tooth gone wrong. A course of Metronizadole and dental surgery and I'm feeling better generally now, including the Urticaria.

I would like to try Xolair, but it's not covered here in the UK for physical Urticaria's like cold Urticaria.

Hi

So sorry you are going thru this i know exactly how you feel or i did.. I have been getting the xolair shot for over two years and am hive free.. I do ocassionally get crazy itching not sure why but an allergra, hydrodozine or doxepin help that.. Like someone else said on here there are side effects with xolair but I am not about to stop as time i have tried the hives return.. My insurance does pay for it so I am ok..I hope you find something to help you as nothing really did for me until xolair

what i woke up to on my shin this morning...

I fear that I am just at the start of this very long journey and am scared it will only get worse. I’m waiting on blood tests to come back but not sure what that will tell me.

They have got so much worse over the last week however no quite as bad yours on your leg rjs.

I’ve attached some photos of mine, they don’t always look the same and some are very tiny marks that go away in 12 hours or so and I there’s are huge welts that last up to a week. I have some cracking ones on my bum!! (Which I won’t post photos of!) - perhaps worse after sleeping?

I ate a pepperoni pizza last night and as I said, they ate way worse today than yesterday, could it be something in that? Clutching at straws here.

Blood tests will probably not tell you anything so I wouldn't worry about them. That said, both of your hives look pretty big and angry. Maybe best to see an immunologist about immunosuppresants or Xolair. Best to avoid steroids, as the steroid bounce can make the hives really bad. And I think steroids can play with mood and cause stress, which doesn't help hives.

Also, wouldn't worry about the hives get worse. At least in my experience, they were worse towards the start and got better as learned how to manage them and what triggers to avoid.

You mentioned pepperoni. Actually there absolutely could be something in that. Pepperoni and cured meats like that are very high in sulphites which can cause hives, angiodema and asthma attacks. Other high sulphite things are wine (especially sparkling like Champagnge and Prosecco), hard cheese (Parmesan, Pecorino, Pesto) and even cider and beer and some canned foods (like coconut milk and tinned tomatoes).

You mentioned hives on your bottom, and after sleeping. That could be pressure urticaria. I've met a few people in urticaria clinics along the way that talked about sleeping and crumpled bed sheets causing hives. If the weather is particularly cold where you are at the moment, cold is another possible physical trigger.