Has anyone given up work because of chronic hives?

Hi Marcus,

Thanks for replying! Your story sounds similar to mine in that leading up to this I haven't really been looking after myself that well, drinking, smoking, late nights, no exercise etc. Plus for as long as I can remember I've had a real love of junk food!!

It's mad that I've even thought of giving up work already and it's probably just because I feel so overwhelmed and depressed by this constant problem! But a part of me dies wonder if actually I should take time off and look for less stressful work! But it would mean a massive pay cut which would bring its own stressors!

I'm on fexofenadine but only 120mg and it doesn't seem to be doing much and since using it alongside steroids it eases things for a few hours then it comes back worse!

You e inspired me not to give up but I may have to give in and take s bit longer off work to really focus on getting better! Dread the thought of going back like this! Hope my gp will sign me off!

Thanks for your advice!

Hi Marcus

Funny you should say that when you travel to different environments you 

have no problems with your condition.

i was born and raised in the tropics and have only developed this ANNOYING thing since being in Canada for twenty odd years.

i am a vegetarian and eat very well so the gut"thing" is not a problem but when I drink Sake I find the rash occurs more often.

but what is Sushi without hot Sake?

Am following this forum in the hope of gaining an understanding of what to expect. Nice to have support.

Hi Marcus

I had hives and angio oedema 8 years ago and thought it was gone but is now back with a vengeance. Started up again in September and has got progressively worse. The strange thing was that my daughter had it at exactly the same time and we suffered together. She was referred to the hospital and was told in no uncertain terms that it's not connected. Anyway she was prescribed Fexofenadone hydrochloride 120mg, my doctor at that time gave me nothing and I had to rely on over the counter anthistimines.

This time I managed to get the same medication but it hasn't really done anything and then on reading the leaflet it says the 120mg is for hayfever etc and the 180mg is for chronic urticaria. I've finally managed to get the stronger ones and have been taking them now for three days but I'm just getting worse.

Do you find that on taking them your condition gets better quickly? Is it maybe I haven't been taking them long enough.

I'm at my wits end here. I've read lots on this forum which is so helpful. I'm trying gluten free to see if that will make a difference.

I'm using calamine and Eurax to try and ease the itching and have also been putting ice packs on my legs to try and help.

Any advice would be very gratefully received.

Many thanks

Jill

 

Hi Jill that is a shame to hear!

Taking 180mg fexofenadine works for me but all the other factors that trigger my hives need to be controlled. I take one in the morning and one at night and it seems to keep my hives at bay if I'm not tired, stressed, run down, or exposed to the cold for too long.

This week I am working in the cold so no matter what I wear the British cold will get through me and possibly attacke with hives. I've found that as soon as your immune system is tainted/weakened in any way whether from sleep deprivation or overworking, or whatever, that is when your body starts to give you hives.

Recently my hives have been a lot better as I've got myself back into a routine of working out in the gym, playing squash etc and also juicing. You need to repair that immune system of yours someway or another and I have done it (or am in progress of) by cutting out the things that affect you. Alcohol is a big one and I hardly touch the stuff anymore!!

Hope this helps!

Marcus

If you are in the UK try to see a specialist in Chronic Urticaria, GPs haven't a clue really. I was referred to a local specialist who prescribed Cyclosporine which worked for me but also re-referred me to a specialist at Sheffield Hallamshire Hospital called Dr Sabroe (Dermatology) who is one of the UK's best for CIU.  She confirmed the treatment I was using and was very caring and knowledgeable.  Unfortunately you don't seem to be getting the same concern from the medics you've seen, chase them up and put pressure on them to do something for you.  

I used very very salty water on my hives and this worked better than Calamine or any other cream. You may have to apply it more than once but it does take the itch and sometimes the hive away. Good lucki

Many thanks Marcus for getting back to me so quickly.

I have changed my diet recently. After reading some of the comments here I'm trying to be gluten free, but then saw that lactose could be affecting it, and then I looked up about high histmamine, but after that lot I'm not sure what to eat!

I'm actually tea total have been for the last 11 years after a bad relationship with alcohol!

I didn't realise that cold could affect it and always thought that it was heat that would make it worse, good to know.

I think I've probably been getting stressed without realising it. I will need to work on that one.

It helps to know that it's possible to get it under control and gives me hope.

Thanks very much for your help

Jill

Hi Lorraine

Thanks for replying to my message.

Yes I am in the UK.

I have just spoken to my Doctor and asked him to refer me but apparantly he needs to see me again first, which will now be tomorrow because he can't fit me in today. They really do seem to be hopeless when it comes to this condition.

It helps to know that you are using Cyclosporine and that it works. It will be something I can try to get prescribed.

I will try the salty water mix and will be heading to make that as soon as I've replied as my legs are driving me up the wall!

Thank you so much for your reply. I really appreciate your help.

Jill

 

Hi, glad to give advice. Triggers for CIU are varied and wonderful!! For me it was a few things all at once: Leaky Gut Syndrome (I can tell you more about that if you want later), ill health - novo virus and synusitis and colds, oestrogen changes when I came off HRT, and stress because I'd hit 60 and work with a pillock!!  My CIU was also triggered by chafing and pressure so I had to do alot of alter and make to my clothes so I could wear stuff for work.  I said was because my CIU has gone into hibernation. I don't think its totally gone but at present I'm hive free. I was on cyclosporine for 6 months 100mgs, plus fexofenedine 180mgs in the mornings and loretidine before bed. When I came off cyclosporine I did it gradually reducing 2 wks at 75mg, 2 wks at 50mg and last 2 wks at 25mg. I'm also on Doxepin which is an antidepressant that has antihistamine in it. For me it worked a treat but you'll read that for others it doesn't.  Also there is cold and heat triggers for some people, and also very rare touch.  You have to look at what has changed in your life over the past I'd say 2 years in order to have a guess at your triggers and it could be more than one. 

The salty water fix - have half a tumbler of water add salt and stir keep adding salt until there is a fine layer of salt at the bottom of the tumbler - my husband (a bit of a scientist at school) told me this one and it certainly worked for me. Hope you find your triggers and I'd advice you to look up high histamine food, its on the 'net'. I did this as well and then when I was clear of hives reintroduced other foods gradually.  Good Luck

Hi Lorraine, I've got an appointment now to see a specialist on 3rd December in Cardiff. He specialises in allergies, ulticaria, adenoma, anaphylaxis and immunology. However he is NOT a dermatologist. Since booking the appointment my family has advised me saying that allergy specialist is a waste of time and that I should be seeing a dermatologist! I'm so confused! Surely if this guy I'm booked to see specialises in ALL of the symptoms I have and can test me for allergies, he is the best person to go to??!! I can always see a dermatologist after that if nothing comes of it?! My GPs have not been much helping in guiding me in the right direction and said that a dermatologist consultant appointment would be a 6month wait so I've just gone ahead privately and found this allergy consultant myself.

Surely there's a cross over between the two! I'm just a bit stressed about spending a lot of money on what could be a waste of time!!

Go with the appointment you have. A dermatologist may know about urticaria but probably specialises more with psoriasis, eczema, dermatitis or cancer. My first specialist who was a dermatologist admitted he new little about urticaria and referred me on to Dr Sabroe at Sheffield who did. If your not happy ask to see Dr Sabroe she's brilliant.

Thanks Lorraine, it definitely helps to have a name!! I am going to trust my instincts and go with the appointment I already have set up rather than change to dermatologist. I agree with you that dermatologists deal more with ecsma and contact dermatitis. I don't have this, I have hives, swelling and breathing difficulties! Fingers crossed I get somewhere with my appointment! Xx

I went to a dermatologist both times before and they had no clue what to do. This time I had an follow-up appointment that was scheduled before I got hives this summer, so when I went back to have the freckle checked she asked me about my hives and I told her I know it's not just a skin issue so I wasn't there for that. She did tell me a different way to take my antihistamines that helped but only after going gluten free.

I am anxious to hear what your doctor says.

I will update you after my appointment!

Hi Heather!

Thanks for your response! I started an elimination diet a few days ago, although I seem to react to anything I eat but persisting to give myself chance to detox etc.

My job is a very stressful job so I am really worried that if I push myself to go back I'm not going to fully recover. Plus part of me wonders if I've developed this as my body's way of telling me to slow down. Is leaky gut linked to stress at all do you know?

Yes!! If you are able to take sick leave or time off maybe you should consider it. Once you heal your gut, you will feel totally different. I hope one of the ladies that helped me sees this and can offer their advice.

I could not control my hives with any amount of medicine. Steroids helped when I broke out this last time in July but I feel awful on steroids and have learned they are so bad for out gut. They are necessary sometimes though, I will say.

When I found this forum I was beyond desperate. I could not sleep or eat. I got my son off to school and picked him up. The rest of my day was spent in misery. I was also doubled over in pain whenever I ate. I started eating rice (GMO free), eggs, hot water with lemon (this was so comforting), apples & pears. I also eat potatoes & corn grits & avacodos. Whole and fresh is what I stick to. Fresh chicken, salad, squashes,olive oil. I just bought some salmon because I need something different.

lorraine34338 ...can you offer some advice please.

If she does not see that, please write to her. She helped me!

That's good, I've stocked up on most of that stuff recently but can't bring myself to eat anything ATM. It's horrible feeling like you're just surviving not actually living! Missed bonfire night with my 4 year old yesterday as I just couldn't move out of bed! The steroids got it under control last time but don't seem to be doing the trick this time, it's coming back worse once they wear off.

I will do a bit more research into leaky gut and will have to swollen my pride and take extended sick leave. I just feel so guilty being off but I need to get over that and put myself first!

Thanks for your advice 👍

That's ok if you missed the bonfire. I promise you, better days are coming. I know I sound crazy but I know exactly how you feel. Our body is at war. Dramatic yes. But it makes sense. Bone broth is anot her huge help. I have only made mine from chicken so far but when I was doubled over in pain and sipped on it, I know I was getting nourishment. I've made mine from fresh chicken and also from a roasted chicken and the juice I roasted it in (I just poured it in the pot with the bones and the water& some herbs)

I will definitely give it a shot thanks! Did you cut out rice from your diet?

Hi Siobhan and Heather

The UK is not very good at recognising Leaky Gut Syndrome as it came out of US studies. To find out you have it you need to find an alternative to GP to get referred for a Gut Permeability Test (Not Stool Testing). I did mine through a nutrionalist. If you can do this the lab will do a PEG 400 test using polyethylene glycol. This is done by swallowing a liquid containing special molecules that the lab can pick up in the urine vial you have to send after collecting it over a 6 hour period (internet has this info as well). Normal is about 374 (molecular weight fraction) mine was 638 which indicated I did have Leaky Gut. The small intestine gets minor damage that causes folds which allow very small particles of food into the blood stress which triggers the immune system to fight them off. What you both are doing regarding gluten free is what is recommended BUT be very careful about following a Leaky Gut Diet because alot of the food is high in histamine, like lentils, nuts.  My nutrionalist said stick to the low histamine diet, stay away from wheat products if possible, no milk but rice, oat, lactose free milk is ok (not soya its high in histamine). Basically use very fresh meat, fish, fruit and vegetables and rotate the food you cook or eat so there is a two day gap between. She explained this saying repetitive food leaking out of the gut is what can trigger the immune system. Although my gut has got better, I still rotate food. The nutritional advised taking L-Glutamine powder (1 teaspoon in water), a very good multi-vitamine and a really good pro-biotic with all the goody bacteria possible (yoghurts won't hack it).  Siobhan it sounds like you may have urticaria vasculitis or urticaria oedema and will need testing for this from a good specialist. If you live in the UK you should try to get your GP to refer you to a Dr Sabroa, Dermatologist at the Sheffield Hallamshire Hospital.  She is NHS but you would have to travel to her.  She is one of the best urticaria specialists in Britain, extremely caring and knowledgable and I would hightly recommend her to you.  I would also recommend bathing itchy areas with strong saline solution and try drinking 1 teaspoon of baking powder in water during the day.  This is to keep your body from becoming too acidic.

Thank you very much for your response and advice! I'm avoiding high histamine foods and cutting out wheat/ dairy. Do you know if rice cakes are ok? Is the pro biotic in tablet form then if yoghurt don't cut it?

Also I'm amazed that you haven't needed any time off, that's why I worry am I overreacting but honestly I can't manage more than 10 min out of bed!

I've never heard of chronic hives before so I'm shocked to see so many people affected! I am considering that stress has brought this on but I also don't want to admitting it!

Thanks x

In addition to feeling awful and itchy and pain I had severe swelling of my ankles feet and hands.

Rice cakes fine and I didn't have time off because my hives didn't appear on my face some in my scalp, temples and behind my ears so not really noticeable.

Probiotics in tablets and check they have all of the benign bacteria some only have a few. Holland & Barrett in UK have shops everywhere and on line and have the good ones.

Thanks Lorraine that's good to know as I'm eating a few rice cakes to keep me going! Hubby's home today so he's making me some veg soup!

I'm going to have a look at all the suppliments thanks!

Hives and swelling come and go on my face but that's not what's bothering me, it's more the discomfort and heat and the feeling of stress that work brings! I'm worried that it could be what brought it on to start with and that going back too soon won't help. I manage 5 different projects with a lot of demands, feeling like this I don't know where I'd even start with the back log of work and the pressure whilst being distracted by the painful itching!

Feel like a failure fit taking time off but I just feel I need to take time for me!

Hi Siobhan

My advice to you would be to go to your boss and explain that your health is compromised at present but not enough to take time off work, that it is catching and that you want to continue to work. Then ask if you could have help/advice on prioritising your projects. If your boss values you and the work you do I cannot believe you won't get help. If this is not a scenario you could work with, can you take some work home where you can relax in jammies with a cool fan on and be able to concentrate. Please try the saline solution on your itchy hives, you may need to apply a few times but it does help and some people on this blog can vouch for that. I understand Marcus' point of view but do not dismiss Doxepin antidepressant, my two specialists both agreed with the meds and it really helped me. I was at a really low point and within two weeks I was back to myself, the hives were still not gone but along with the cyclosporine I was on and two anti-histamines I've beat into dormancy. 

Siobham sorry I meant to say it isn't catching, this auto test stuff gets it wrong sometimes