Day 70 of the hive hostage situation

lm so sorry to hear this. 5 yrs ago after hives for 93 days, several tests and ER, and DR visits i was Dx with CHRONIC AUTOIMUNNE HIVES.

have epi pens and steriods for emergencys. but daily they upped my vitamin D , probitics, eat gluten free now, and take benedryl as needed. its a struggle i can go for days even weeks with no symptoms then just like that back again!

I also was diagnosed with rheumatoid arthritis and high antibodies for thyroid disease which kind of goes hand-in-hand with chronic hives . I pray for you that you get some answers and good luck to you !

I have been going through something similar for almost 5 years now.

I've been through so many doctors and specialists a this point. All of my stuff lines up with yours. Mine are also "pressure based". So if something rubs on me , touches me, or hugs me too tightly I swell up like crazy.

It's the same thing though. Gone in the morning. Cruddy mid day. AWFUL in the evening. So painful and so itchy.

We tried tons of different antihistamines, prednisone (which just can't work long term), and more. The final thing my doctor is recommending I look into is "Xolair". I believe it's only available via injections, but if this continues for more than a year or two, don't wait. I've read a lot of positive stuff about Xolair on people. (If it continues just talk to your doctor or get hooked up with a good allergist!)

hello, firstly very sorry to hear you are suffering. i had hives and angioedema (can never spell this right) for 3 years with only relief coming from steroids which if i'm honest i would say to avoid but i was desperate (not nice long term side effects)

i tried to monitor everything like you are and set out on my mission to find the cause and trigger. got referred to immunology, who kept saying over and over that there is no 1 cause and that it will burn itself out in time just not sure when. in meantime controlled with daily antihistamine and short course steroid when i felt it was unbearable. advised that stress and cafine, alcohol and salicylates in food can make it worse. Put on waiting list for xolar injections (immune supressant).

i have been hive free for 1 year now apart from tiny outbreaks here and there that have gone with no need for tablets. i think pregnancy and hormones and having time off work after baby helped. i then left that stressful job and i know this helped.

ive had time to reflect and i know now that for me all of this was stress related. it came on after a very stressful event and i know it was my bodies way of telling me that i needed to stop, slow down and look after myself because my mind was not listening or paying attention. i believe now that when our mind is ignoring stress or trauma and we are supressing emotions and not listening our body will find a way to force us to pay attention through chronic illness.

its interesting that you say that you have no hives waking up (youve spent the night resting and are destressed), they go away after liquor (alcolohol is helping you relax). the other trigger you mention is going low card before this started, dieting or change in calorie intake is also a stress on the body. your hives get worse as day goes on in line with the stress that you are encountering and it builds up over the day.

so i would really encourage you to evaluate the stress in your life, not just little things but really ask yourself what is causing stress, what is your body trying to tell you? has anything happened to tip you over the edge? are there any toxic realtionships in your life? are you doing anything that goes against your values? are you looking after everyone elses needs and not your own? do you have any trauma from your childhood that you haven't dealt with? have you been needing to lie or hide anything or supress emotion?

i used to get so annoyed when dr would say it will go eventually, and i drove myself mad trying to figure out cause and i probably made it worse as a lot of the things i tried added more stress. for me i truly belive that it didnt go until i learnt the lesson to truly take care of myself and value myself and to say no to things in life that were not in line with who i authentically am.

i wish you all the best!

take care x

Hives since February 2017. Reacted to pressure, but was completely random apart from that. I am not a stressed person, usually, unless I've got the f****** hives....

I feel for you, but of course everyone on here does, because this is an evil condition that doesn't have any rhyme nor reason.

My dermatologist told me I could spend the rest of my days trying to narrow down the trigger/triggers, she described it as the 'perfect storm' of contributory factors, they could be working as an individual protagonist or as a group. I am sure mine is food related though.

Xolair has worked for me, and I am now on 8 week intervals between injections. However, I occasionally get a strange gurgling in my digestive system after a meal and I am convinced that something in that meal is the trigger, but that Xolair is doing it's thing and keeping it under control. I am now going to keep a food diary and note when this happens, but it is so random.

I agree about the booze, I remember that a glass of wine would calm the symptoms somewhat.

Hi Marie,

So sorry to hear of your urticaria. I suffered from this just over a year ago and had it bad for about 8 months, horrendous. I visited a couple of Nutritionists who put me on various supplements {which I still take], they include probiotics, digestive enzymes, Vitamin D drops and fish oil capsules. I was also advised to drink 2.5 litres of water EVERY DAY without fail, cut out tea [coffee okay] , No chocolate or tomatos and after doing this for a couple of weeks my hives actually cleared up!!! not had any since.

Give it a try Marie, you have nothing to lose. The water and my supplements [I think] is what really cured me. Good luck and let us know how you get on.

HI I was diagnosed with chronic hives and angioedema almost three years ago and they were horrible.. At night i would get them really bad.. I took every antihistamine there is out there and nothing worked until prednisone.. of course i did not want to be on prednisone long term so I started getting the xolair shot about every 5 weeks about 2 1/2 years ago.. I have not had the hives at all for over five months.. before that i was getting them here and there with the shot.. But now my thyroid is under control and I think maybe that was it.. but i have weeks where i get really itchy so trying to stay gluten free as much as possible.. I wanted to get off the xolair but think i will just extend my time out instead as I sure do not want those awful hives again.. I also have arthritus which is another trigger..