Day 19 of hive hell... help?!

Skin, nail and hair health
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Almost 3 weeks ago, completely out of the blue, I spotted a hive on my neck. Just the one! After a few hours I started developing a more widespread red ‘heat-looking’ rash and didn’t look into it too much. The next day I was covered head to toe in itchy, burning hives. For the last few weeks I haven’t been able to sleep properly due to the horrendous itching everywhere from my scalp all the way down to my toes. I don’t think there’s a part of my body that hasn’t had hives or a rash!

In the first week I also had swelling round my eyelids. Things then progressed to me becoming very wheezy. I would get a burning red thumping rash round my mouth and would almost instantly be short of breath. I’m also radiating heat all over - particularly from my ears and I can’t step out in the sun for more than 2 mins without having a sudden burning rash and hives appear.

The rashes a mixture of classic welts, red streaks and patches of flat red blotches. It looked really gruesome at some point, almost like extremely inflamed acne.

Also my eyes are intermittently burning. I’ve cried (a lot!) and it’s like I’ve been chopping onions once there’s any flu

I’ve done a steroid burst, fexofenadine, ranitidine, montelukast and nothing is bringing me full relief. Stopped steroids after 11 days due to horrendous side effects.

I’m really not one for allergies at all, this is so unlike me! I have investigated all possible foods and triggers and I can’t see a pattern. I’m due to go for an allergy blood test tomorrow. All other blood work fine apart from slightly high mycoplasma titre but considered ‘normal’. Doctors have checked me over.

I’m terrified this is going to last forever things are worse since stopping the steroids... anyone else had anything similar?! My scalp is so incredibly itchy. 

I have no sore throat, runny nose or any other ‘under the weather’ symptoms. 

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***Also my eyes are intermittently burning. I’ve cried (a lot!) and it’s like I’ve been chopping onions once there’s any fluid in my eyes. (Correction!)

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Hey Steph, here's a blog I posted about a year ago detailing how I recovered from urticaria. If you have any questions please message me, would love to help you.

thanks

ethan

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https://patient.info/forums/discuss/how-i-was-cured-from-chronic-uticaria-588149?page=0#2664930

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I feel for you, Steph.  This was me about 3 months ago when I developed hives after a tooth abscess.   The initial treatment was steroids and anti histamines, but my symptoms were less intense than yours, nothing on my face, just a bad rash on my scalp and torso, which seemed to choose a different site every day.  At one point it felt like my oesophagus was inflamed, there was a burning in my chest, but I am not sure if that was connected or if I just had heartburn!  I am only an 'expert' in my own experience of the condition, and I am not sure how much help I can give.  I am seeing a dermatologist and filling in an Urticaria Activity Score paper each day for 3 weeks as my hives have lasted longer than the magic 6 weeks, after which it is deemed chronic.   I fill in the approximate number of spots (you don't have to count each one) and the intensity of the itching (ranging from 'none' to 'intense&#39 and I will take that to my next appointment to discuss whether I should stay on the Aerius, or if I need to have the Xolair injection once a month.  (I live in France btw, so this may be different elsewhere).   At the moment I take 4 Aerius per day, 2 morning and 2 evening, this seems to keep the rash subdued somewhat, although I do wake up with spots each day.

One thing I have noticed is that stress doesn't help.  I am quite a laid back person on the whole and my life is relatively stress free.  However, yesterday I worked myself up about something, and today have the worst hives I've had in a while.  I know it's easier said than done, but do whatever you can to keep calm.

 People who have never experienced this condition have no idea how awful it is, and I have everything crossed for you that it disappears as quickly as it arrived.  (This IS a possibility, btw.)

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I have no idea how that smiley face got there, it was supposed to be a closed bracket!

 

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Hi Suze! Thank you so much for your reply. I really do hope that you make some progress with your dermatologist, it's not fun when it becomes chronic which is what I'm afraid of

I definitely felt the chest symptoms too, my throat hasn't felt right and it feels like someone is sat on me / things feel compressed. I suffer from acid reflux anyway so I did find it hard to distinguish at times. 

I definitely agree with the stress side of things. I had a blood test today and needles make me nervous, and my face/neck instantly flushed red with a rash during it. 

Funnily enough my doctor said he is hopeful that it may all disappear as quickly as it came on! 

Wishing you all the best and hoping yours settles soon. Ps. I chopped up an aloe vera plant and extracted the 'good' gel and applying directly to the rash - it has been absolute god send. 

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Hi Ethan

Thank you so much for your reply. I read your post, and today I went for an allergy profile blood test which will tell me if I am intolerant / allergic to any foods, substances etc, so hopefully that may point me in the right direction. The general thought at the moment is that it may be an infection of some sort! I actually have numerous gut problems, I'm due to have my gallbladder out due to a recent gallbladder disease diagnosis, so I have no doubt that may have some involvement...  

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Hi Stephie,

Aloe vera gel is good. And if aloe vera is good for you, I also find 1% mentol gel really good with it.

Steroids can help in the short-term, but aren't really a long-term fix and often do cause it to flare after stopping. The flare after steroids will calm down with a little time. I know how bad those flare ups can be, try to think it will get better again once that calms down. For most people, hives don't last forever. I'm slightly unlucky in that I have cold urticaria, which is one of the less understood, harder to treat types that tends to last the longest. 

You mentioned awful scalp itchiness. I used to suffer from that either when a viral infection had made the hives worse and especially when I used to take NSAIDs (ibuprofen, aspirin) for cold / flu. With hives, you might want to try avoiding NSAIDs as they are common triggers. There are other things that often trigger hives and asthma for me, like food additives (sulphites in wine, cider or dried fruit, for example).

If high-dose antihistamines don't work for you, there are quite a few other treatments that can help. For the most part, you want a doctor with a background in immunology rather than ordinary dermatology. With treatments, it's trial and error but you could look into the following:

Dapsone

Cyclosporine

Mycophenolate Mofetil

Methotrexate

Xolair

UV-B phototherapy (helped me a lot, at least for 3-6 months with little side-effects bar a nice tan)

Try not to get too anxious about it. Anxiety does tend to make it worse for lots of people and poor sleep makes it easier to get wound up. If the sleep is causing upset (that was the worst part for me), then for relief you could try Gabapentin, Atarax, or Doxepin. I found Gabapentin most helpful as it dulled the itch and helped with stress but without making me super drowsy the next day. In the early days, Atarax and Doxepin helped a lot and are good anti-histamines. But Doxepin side-effects are almost as bad as steroids (weight gain, appetite changes, stomach upset, moodiness).

You mentioned it flares in the sun. That could be Solar Urticaria maybe? Has warm / sunny weather just begun where you live? It took me a year or two to figure out that cold was triggering my hives and for me that started once cold Winter just after recovering from a severe flu / recurrent sinus infections. Cold, viral infections and certain food additives turned out to be my main triggers. Once I realised that, and found Gabapentin and mentol gel to calm the itchiness, I found I could cope just about ok most of the time.

I still have bad days, but they happen less and less often. It helps when things are bad to just accept how bad it is, cancel all plans, try not to overthink it and just let it pass. I remember how bad it was at the beginning when I just wished one day out of four would be bearable. But the pieces of the puzzle do begin to fit together one by one. These days, it's still an annoying problem that affects my life, but it's only a few bad days a month and it rarely upsets me too much. Still, I find new things that make a difference, like recently I discovered chilli peppers, especially in large amounts, trigger my hives.

 

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Oh, before I forget. The other thing that caused my scalp and ears to flare was common shampoos and especially conditioners. You might want to try washing your hair in just pure liquid castile soap for a week or two and see if that makes any difference. We also wash our clothes using just an eco-egg. You can get those online. I know this might seem extreme, but people with hives can be sensitive to all kinds of things, parabens, benzoates, sulphites, perfumes. Same thing with sun-screen, mostuirisers etc... From a practical point of view, the eco-egg has saved us money and hassle over a year or two and is better for the environment. My wife was sceptical initially, but is converted now. 

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When the rash was on my chest, I must have scratched it all night, in that 'half waking, half sleeping' state that hive sufferers experience during bad bouts.  The next day I was so desperate to ease the itching, and I had read somewhere that someone had made up a paste of Bicarb of soda and spread it on the rash.   Needless to say....do NOT do this.  It stung like hell and made my skin very dry.  Aloe vera sounds much more sensible!    

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Thank you so much for your reply! 

4 weeks in and still suffering, scared that I'll end up in the chronic stages! I have read good things about menthol so will give that a try. 

I'm happy that, even though I stopped the steroids, things aren't as bad as they were before the steroids. I think it dampened things down a bit at least. 

I can't use NSAIDs as I have gastritis and gallbladder problems so my gut health is pretty bad. I've read about a lot of links between the skin and the gut. I even heard of some people finding hive relief after they had their GB out which is what I'm due to have! 

If high-dose antihistamines don't work for you, there are quite a few other treatments that can help. For the most part, you want a doctor with a background in immunology rather than ordinary dermatology. With treatments, it's trial and error but you could look into the following:

Thank you for the med suggestions, my next step is an immunologist if this still doesn't improve. 

As soon as I get stressed and worked up I find that it makes it worse, so I'm certainly looking at that side of things. I went to the doctor yesterday as my vision was blurry and he said it was a side effect of all the medication I'm on - fexofenadine, montelukast and ranitidine. 

I did think about solar urticaria but it didn't start with the sun and even after a week indoors in the shade it was still a problem, but the sun definitely brings it out and makes it worse, I'm hoping that's temporary... it is really warm here at the moment. 

I keep thinking that I'm going to end up with some sort of cold or viral infection but it's strange how I feel well otherwise. A recent blood test showed the antibodies for glandular fever and they said it was 'recent' but I haven't felt sick since January, so that's interesting. 

I'm glad that you have found ways to manage it and wish you all the best!  

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Thank you Desmond! 

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* sorry a line of your original reply ended up in my reply, I copied and pasted so I didn't have to scroll up while I replied