Please help :(

Posted , 7 users are following.

My story begins about 2 months ago. I know from what I've read on here that many people have been living with chronic urticaria for many years and may scoff at the 6 weeks, but I fear I'm just at the beginning of a very long and anxious journey.

I went for a routine travel vaccine a month before a trip to South Africa - got Viatim which covers Hep A and Typhoid. Felt a bit poorly afterwards but attributed this mostly to standard post-vaccination immune reaction. 2 weeks later, and with a sore throat developing, I went for the seasonal flu vaccine (I know, I know, apparently I shouldn't have). Within 24 hours I was covered in aggressive hives all over my legs and arms.

Doctor took me in and diagnosed me with Strep (? which to this day I can't tell if I truly had or not), and put me on 10 days Abx. I finished the whole course and though my throat felt better, the hives had developed into a coalescent rash.

At this point ,doctor prescribed Telfast x1 daily and Eumovate 5% cream. And......... nothing really happened.

Back to the doctor a week later and just before trip to South Africa - oral steroids for 10 days and stay on the Telfast. I took all of this during our trip to SA and returned home to find the symptoms hadn't abated. I had agonising chest pain on the flight home which I really want to believe was just my anxiety flaring up, but I'm not convinced. It felt far too severe for that, but thankfully hasn't really happened since.

That was 5 days ago and I've been back to the doctor again since. This time, Telfast x1 + Xyzal x3 daily. Not seeing any great improvement, and on top of everything I don't think my body really likes the Xyzal very much. Just don't feel fantastic when I'm on it.

The hives seem to get worse with heat changes, and this time of year they're hard to avoid - my wife likes the thermostat a lot, and I find that every single morning without fail when I wake up from a drowsy sleep I am covered in a fresh batch of hives - head to toe now, with the exception of my face and feet.

What do I do? I have so much fear that this isn't going to go away. From what I'm reading online, anything longer than 6 weeks is classed as chronic and I understand many of the contributors here will have been dealing with this condition for years.

Please tell me there's hope... right now I'm despairing, and can feel my anxiety getting the better of me by the minute.

Any and all advice/support appreciated.

0 likes, 21 replies

21 Replies

  • Posted

    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.

  • Posted

    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.

  • Posted

    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.

  • Posted


    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

  • Posted

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

    • Posted

      just how mine used to be .. so sorry i know how awful it is

  • Posted

    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.




    • Posted

      Mine started like that then got so many more so much worse then xolair and at firts they were great then bad again now i have none .. I get the shot monthly tho.. not about to go thru all that again as i have heard ppl say once you start the shot if you stop then try to start it again it doesnt work.. I have had this for over 4 years..

    • Posted

      try going on gluten free or see if your thyroid is bad.. that causes hives

  • Posted

    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.

    • Posted

      Thank you for your reply, and just want to say sorry for jumping in on your thread rjs, hopefully there will be some advice out there for us both!

      Mine are odd as they seem to be on both sides of my body, not my back or stomach. Today though is the worse day so far, all over my bottom, inner thighs and top of my legs, sides of stomach and ears. It’s actually really uncomfortable to sit down.

      You mention coconut milk - I’ve just stated using coconut hair spray, maybe something in that?! Though I have nothing on my head. This drives you insane doesn’t it!

      Hope it’s not from pressure as that sounds very difficult to manage, but things do point towards that unfortunately. It’s pretty cold where I am (Cornwall, UK) but I’ve never had these issues before at all so it’s so hard to know what triggered it.

      Thanks again for your help.

    • Posted

      I'm based in Manchester and have cold Urticaria. Actually out in Valencia, arranging to move here because it's better here for me. Mine came on out of the blue first day outside in cold after recovering from a flue. My ears come out pretty bad with the cold. I doubt it's the spray, they just add sulphites as a preservative to wine, tinned food etc... to increase the shelf life. Ibuprofen and other NSAIDs (aspirin etc...) trigger my hives too and that's not unusual. So if it's cold season and you've been taking cold medicine, that can be a cause.

      On the other hand, if you were wearing a hat for the cold, that could easily trigger pressure urticaria, as can rucksacks, handbags, carrying shopping bags. You can test for pressure urticaria by just getting a friend to firmly press down the rounded end of a pencil and see if an itchy welt forms. There's a similar ice cube test for cold urticaria.

      But there's also spontaneous urticaria, which is rarely tracked down to any cause. If it goes on for more than a couple of weeks (chronic), it becomes about looking to treat the symptoms and letting it run it's course. Have you had a serious infection recently, like a flu, sinus infection or anything like that? The immune system can produce a response to fighting infection that can cause onset of urticaria.

    • Posted

      Yes, for sure, hives is maddening. Especially at the beginning when you are really struggling with hives. As well as the discomfort in the day, I really could not sleep much at all with the furious all over itching. Atarax helped me not go insane in first couple of months. Doxepin got me through the next year. After that SSRI antidepressants also dulled the itching.. But I didn't get much of a life back until Gabapentin meant I could sleep as it turned the itchiness down a lot and sorted the insomnia with all day grogginess. Immunosuppresants (Ciclosporin and Mycophenolate) were effective but I was unlucky as they made me very ill with opportunistic infections . Staying out of the cold helped a lot when we figured out it was cold triggered. But for me, anything under 15 degrees or with wind and rain or exposed skin and I will come up in raised rash there. Which basically meant outside was problematic 9 months of the year in Manchester.

    • Posted

      Interesting as i moved to another state and the hives came on full force.. Problem is I love it here and dont want to move back where i came from.. and if i did and i still had them.. I grasp at straws trying to figure out why i have these.. I also got diagnosed with thyroid disease and arthritus which can also bring them on.. the whole thing is just so frustrating..

    • Posted

      The thing is that the cause is rarely found. So looking for a cause (to get a cure) can be an exercise in frustration, I have found. The causes can be things like antibodies that were once developed by your immune system to fight off something, like an infection. But then once they are in your system, they can bind / trigger your mast cells to degranulate and release lots of histamine etc...

      What causes it to flare can be a mystery. But I have noticed that getting rundown, tired, stressed, not getting enough sleep and catching even a common cold will trigger it.

      In time, it usually settles down. In the future, I think there are techniques like plasma exchange where they could more or less flush your immune system and replace it with a normal / healthy one. But that's only in the early stages of research. But it's been successful in depressive illnesses, which some psychiatrists are starting to strongly suspect can have a immunological basis too.

      You might benefit from Xolair or other immunosuppresant, especially as autoimmune conditions can trigger thyroid diseases and rheumatoid arthritis (is it RA or other kind?).

    • Posted

      Interesting and I have taken xolair for over 2 years with no hives .. so i will continue that...I have tried everything to find out why and nothing matches..

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