1. Community
  2. Skin and nails
  3. Urticarial Rash

THERE HAS TO BE A CAUSE OF URTICARIA ...

Posted , 116 users are following.

gracIe53
gracIe53

I absolutely REFUSE to accept a diagnosis of 'Chronic Idiopathic Urticaria' which basically means the medical profession have yet to discover the cause. They NEED to get on with their research. This is a deeply FRUSTRATING, IRRITATING, SCARY, DISTRESSING, PHYSICALLY AND PSYCHOLIGALLY DEPRESSING condition and CIA diagnosis is just not good enough. And most of us CIU sufferers are the type of people who 'don't like to keep complaining', so we put up with the damned itching and also we're too EXHAUSTED with the condition to keep running to the doctor every few days.

GPs don't seem to know who to refer us to. We go for allergy tests, nothing is detected, we're put on antihistamines, they don't work. We go to dermatologists, same thing all over again, all tests are done to RULE OUT this and that, but never to RULE IN. In the UK, there are 'within normal limits' criteria for blood tests. What if you have a body that doesn't work alongside the 'norm'? Your overlooked.

I started with this CIU during a really persistent chest infection which wouldn't go away. I knew exactly where in my right lung the pest was living and yet my GP continually 'couldn't hear anything' with the stethoscope, but I could FEEL something not right. Then I had C reactive protein tests which showed and inflammation 'somewhere in my body' but they didn't know where. I KNEW WHERE.

I suffered with breathing problems and this stupid CIU for 10 months, ended up in A & E several times with angio-oedema and anaphylaxis, now carry an Epipen. The rash eventually subsided after almost a year, but not due to antihistamines because they didn't work, some even made it worse.

But my skin remained itchy all over. So I live with constant itching. Two months ago, the rash flared up, I still have it, been to my GP, given Atarax at first which made it worse. Went back, given Cetirizine 3 a day, Ranitidine one a day plus Monteleukast if that didn't work. Before I had the chance to even take that, I had to be rushed to A & E a few days ago because the rash was creeping up to my throat and head and I felt my tongue tingling and had a fat lip. Put on IV Piriton, steroids, sent home after 6 hours with a 5 day course of Prednisolone steroid tabs. Still had the rash but it went down and for ONE DAY I WAS TOTALLY ITCH FREE. BLISS.

But it's now back again and I'm feeling really desperate. I work in a psychiatric hospital, my job is stressful, I can't concentrate and can't afford to make mistakes in my work. I have no social life because I look like a cross between a leper and a lousy dog! And most days I just feel that life isn't worth living if I have to continue like this. In fact I don't WANT to live if I have to live with this. That's how bad this skin condition makes me feel. And that's what I'm going to tell my GP next week when I see her because they have to really sit up and take notice where this CIU is concerned and stop fobbing us off with 'it's not life threatening, it will pass, it will burn itself out eventually'.

Thanks to all the posters here for their contributions about what has or hasn't worked for them.

15 likes, 259 replies

259 Replies

Prev Next
  • jean65845
    jean65845 gracIe53

    Posted

    I am going throught the same thing over here in the USA.  I used Vagisil Intimate Body Wash and that was the only thing I had changed in my regular personal care.  I developed hives (diagnosed CUI).  I am from the UK and have always had good skin but now because of hives I cannot dress for summer or go out in the sun.  Nothing is working, steroids, antihistamines, creams.  I am in constant distress and don't feel it's worth living. There is a new drug called Xolair but yout body can go into shock and you could die using it, so do I want to take that, I think NOT!!!!  I take pride in my appearance and this is killing me!! I actuall wrote to the manufacturer of Vagisil products and was asked to send the empty product to them...what a joke, like I kept the empty tube!!!!  This product and all feminine washes shoud be OFF THE MARKET. I have been researching the internet and thousands of women and a few men have CIU with no help and have to live with it for years.  In this day and age with medical research availability I think this is shocking, but what can we do...our quality of life has been taken way from us and we are left hopeless to deal with our problem by ourselves.  No-one knows what we go through but others who suffer from this horrible skin problem. I am sorry I can't help you and others to rid yourself of this as I call it curse!!!!!!!

    • becky77657
      becky77657 jean65845

      Posted

      As I said before....have any of you tried taking high doses of b12-methyl?

      I felt with chronic hives for 1.5 years. Nothing helped. But then I went to DR that specialized in vitamins and minerals. She diagnosed my issue in ten minutes. I've been on the b12-methyl for 6 months and was given free after 1 month of taking the b12-methyl. I was severely deficient. I also added an iron supplement. One thing the medical doctors failed to tell me is that anti-acids, alcohol, cafiene and pain medicine exaggerate the hives. Please look into this. I suffered just as badly as alot of you are describing. Go to your local natural vitamin store and ask about a dissolvable b12-methyl. It has to have the methyl and the dissolvable is best. I put them under my tongue and let them dissolve so it goes right to the blood stream.

    • becky77657
      becky77657

      Posted

      That's suppose to say "hive free after one month." I plan to continue my b12 for a long time. Hoping to cut back on the high doses at the one year mark.

    • wendy62425
      wendy62425 jean65845

      Posted

      Jean

      Where do you live in the US.  I am in Virginia and have a wonderful doctor at Johns Hopkins in MD. 

      Wendy

      .

    • Mark1158
      Mark1158 becky77657

      Posted

      You are on the right track, I don't know if you can see my old posts but I have found relief through vitimine and mineral supliments. Mainly B group Vits and Magnesium.

    • becky77657
      becky77657 Mark1158

      Posted

      Mark,

      Yes the b12-mc has eliminated the hives completely for me. I take 4000 much a day, per the doctor. I take the magnesium and grape seed powder together for headaches or muscle pain. Being i was advised to not take any ibuprofen or Tylenol. The natural stiff doesn't work quite as fast for pain relief but it does help. I also added iron to my diet to help boost my red blood cells.

      But I swear by the b12-mc. It doesn't mean that is the answer for everyone but it may help some of you out there that are dealing with chronic hives.

    • becky77657
      becky77657

      Posted

      4000 mcg of b12-mc daily. Stupid auto correct.
  • emily36239
    emily36239 gracIe53

    Posted

    Hi gracle53,

    I am so relieved to find your post!

    I have been suffering from CIU since Christmas to this date and it has ruined my life!!

    I have been to doctors and on steroids, ucerax, 120mg antihistamines and gertac twice a day since May, all with no answers from doctors, as you said just masking symptoms!

    I have been to GPs, consultants and autoimmune specialists and each of them have just passed me off to the next doctor not interested in finding out what's wrong and the guy I go to now couldn't care less about what's happening..

    Your story really hit home for me (so much I started to cry with relief that somebody else felt I did!!).

    My body has been absolutely destroyed with all of this and I really feel like a totally person that I was this time last year!

    I used to be a happy bubbly person and since this happened, I could stay in bed for days with depression and tiredness!!

    I just wanted to say thanks for posting this because you are the first person that has actually said it the way it is!

    I hope things are getting better for you!

    • becky77657
      becky77657 emily36239

      Posted

      As I said before....have any of you tried taking high doses of b12-methyl?

      I dealt with chronic hives for 1.5 years. Nothing helped. But then I went to DR that specialized in vitamins and minerals. She diagnosed my issue in ten minutes. I've been on the b12-methyl for 6 months and was hive free after 1 month of taking the b12-methyl. I was severely deficient. I also added an iron supplement. One thing the medical doctors failed to tell me is that anti-acids, alcohol, cafiene and pain medicine exaggerate the hives. Please look into this. I suffered just as badly as alot of you are describing. Go to your local natural vitamin store and ask about a dissolvable b12-methyl. It has to have the methyl and the dissolvable is best. I put them under my tongue and let them dissolve so it goes right to the blood

  • heather94146
    heather94146 gracIe53

    Posted

    July was one year since my latest episode with hives. Instill have them. Id like to say they are under control at the moment. I was on a regimen of antihistimines- loritadine, catrazine, benadryl. I also took Vit D (not currently taking), liquid B complex, i gave up all gluten, all processed foods, i did give up alcohol for a while, and sugars and by that i mean i dont eat cakes-even gluten free, i dont use it in my coffee etc. I do eat fruit, an alcoholic drink and white rice so i know that counts as sugars. My hives did well and almost didnt have them for about two months. But one day, leading up to my period, they came back and with a vengeance. None of my antihistimes worked, not even benadryl! I went to my GYN- she didnt believe it had anything to do with hormones even though my hives get worse each month right before i get my period. My gp sent me to an allergist who took a ton of bloodwork and said IGF 1 (i cant find my paperwork and that part us really important to what im telling, im sorry) anyway its a glitch in my immune system that can make upper respiratory infections worse. Its also found in people who have Lupus. So far i have no symptoms of anything. I do have to tell every doctor and hospital i go to that i have this (thats why i need to get the exact diagnosis again) because if i ever need blood, there is only a certain one i can receive. At that time he also added Allegra to my routine but i am off that now BECAUSE i kept getting horrible hives and my quality of life was down the crapper. I reluctantly decided to start getting the Xolair shots. So far i have received 2. I have begun to get hives when im stressted or have warm clothes on, but i am due for my next shot on the 16th and due for my period soon as well.

    One of the many upsides of going gluten free is i feel (when i dont have head to toe hives) amazing. Energetic. No swollen, sore joints! And with exercise (i began walking for my anxiety, then beach bodybworkouts) ive lost 29lbs too!!!

    This group was a lifesave for me! Keep us posted!

    • becky77657
      becky77657 heather94146

      Posted

      Read my comments above about b12methyl.

      I also had blood work done and had horomone levels checked. All was fine.

      Please read my comments from a couple hours ago

  • mimi29849
    mimi29849 gracIe53

    Posted

    I am so sorry you are going through this. It's maddening - and I have had some pretty dark thouhts from time to time. However, I have had a bit of a break through.A HUGE break through, actually.  I started looking into foods that flare up autoimmune issues such as CIU. ( I have Graves)

    We aren't dealing much with actual foods that cause this as in allergies - but there are certain foods that cause inflammation and autoimmune"flare ups". I love sugar - I have illiminated all foods that I am sensitive/alergic to, but still had hives. After endless reports of how sugar is the devil for autoimmune diseases - I stopped all sugar. Fruits, honey, maple syrups, all of it. MY HIVES WERE COMPLETELY GONE in 3 days - and it's now been three weeks. Just to test my theory, I had organic GF waffles yesterday with organic maple syrup. Today I have giant hives on my back and I am miserable.

    It is without a doubt the hardest thing I have had to illiminate from my diet - I love my starbucks soy lattes. (soy is rough on autoimmune as well,so I was really doing a number on mysef) But no more sugar for me and it's far better not to have hives.

    Please try it for a couple of weeks and let me know. Also, hop on the web and look up foods to avoid with autoimmune diseases. I saw relief with illiminating alot - but none worked the magic like quitting all forms of sugar.

    Hang in there! You are not alone.

  • techeros
    techeros gracIe53

    Posted

    Friends, I have this condition and I may have FOUND A SOLUTION. I have had the skin writing disease for almost 7 years! It came on when I was building my home and training for ironman. Well, recently I have been having issues with food allergies as they seem to have gotten worse over the years. I am also lactose intollerant. Im 41 male in good health and im alive. wink I have also been battling a blosted gut gastro issues constipation and diahreah as well. I have also had issues with thrush as well. 

    SUGAR - may be the culprit! 

    As an athlete we use several forms of sugar becasue it is quickly absorbed in our systems and we need it to sustain long miles. My intake of several types of sugar started 7 years ago. 

    I am on a NO SUGAR DIET now for almost 4 weeks. Folks, I lost 9 lbs, my gut feels MUCH better. I HAVE BAD HEADACHES, but I'm coming of the drug sugar and I think it's withdrawl symptoms. Most of all, my skin. I used to itch SOO BAD. Not much anymore. I can barely see the marks when I write on my skin with a pencil. 

    I believe I have found the solution. For me, I THINK it was an overgrowth of candida (yeast) that feeds off sugar.

    Ya'll, sugar is in EVERYTHING. 

    My mom was recently diagnosed with Psoriasis. 

    I believe your gut is tied to all of this.

    Just saying. 

    GET OFF SUGAR.

  • justine_23155
    justine_23155 gracIe53

    Posted

    I've had 3 years of immuno suppressant and still have to peel my bedsheets from my skin every morning where my blisters have crusted . I'm at a loss now. All my tests for causes come back negative. If it weren't for the fact that my skin is now a massive weeping sore the medical profession would say I'm perfectly healthy!! What's going on??? Are there any answers out there?

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.