THERE HAS TO BE A CAUSE OF URTICARIA ...
Posted , 116 users are following.
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
julian18620 gracIe53
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enough food I like not to send me mad... hardest thing for me is no shellfish
heather94146 julian18620
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lora22435 gracIe53
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We have to understand what causes the break out of hives. There are a few factors involved: preservatives, pesticides, hormone imbalance, acid-alkaline imbalance, environment, diet, lack of exercise and stress.
When you are having a break out of hives. You got to avoid food like Gluten, Dairy, Refine sugar, and Nuts (except walnuts). Follow by going on a vegetarian diet for a month. Reduce your meat to less, but lean meat or preferable fish. Avoid any deep fried foods. Eat lots of vegetables, fruits and drink lots of water.
Have anyone take multi- vitamin, fish oil, walnuts? I will go on vegetarian for a while and change my diet completely to start with.
Good luck!
julian18620 gracIe53
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Getting results in that I have had my first week free of swelling in my face... although the urticaria has been a lot less fierce it is still breaking through even with the fexofenadine.
Have also managed to bring forward my trip to see the consultant immunologist by going to see him at a different hospital, so that is now only two weeks away rather than six weeks.
mh96526 gracIe53
Posted
Please try taking 1 antihistamine (like Zyrtec) AND 1 antacid daily. I had severe hives for two years following my hysterectomy. Sometimes my feet would swell so much that I had no arch and my skin would split. My hives were caused by pressure, stress, heat, you name it. Once I started taking both the antihistamine and the antacid together every morning, I stopped having hives after a couple of weeks.
From what I understand, those individuals with chronic urticaria need to block both the h1 histamines and the h2 histamines. H1 histamines are blocked by the allergy type of antihistamine and h2 histamines are blocked by antacids.
I took that combination for 9 years with great success. Zero issues with hives. Now, I don't have to take either.
julian18620 gracIe53
Posted
Saw the immunologist a month and ago and had a band of tests... never seen so many. Going tomorrow to get the results.
He was keen for my mental heatlh for me to increse the inatke of fexofenadine and just forget it.
Which I did try and really it didn't work.
At first it did, but that was including the good effects of the diet.
But once I was fully back into pretty much eating and drinking what I wanted even three fexo and three cetirizine were only just keeping it surpressed (and yeah all the while with that feeling that this is only masking the problem).
And as of this week the drugs failed entirely and I was covered from head to foot with consideral swellings too.
So as of today started on steroids again as they are the one thing which will clear it rapidly.
Anyway... back on the diet as of today. Also been having acupunture.
Not sure where to go next.
The immunologist, unlike the GP, was very intereted to know it all started after a month of very hot weather and after a very nasty tooth extraction. He has said it's important for there to be no issues with my teeth and I know there still are. Apparently uncontrolled inflamation anywhere in the body (which could be happening with my teeth) can cause it. So I guess I need to go back to the dentist yet again too.
Will post when there is anymore info.
Been really low the last two days, have wanted to do nothing but stay in bed. But rightly or wrongly the steriods at least clear things enough as a start to the dull but worthy diet again.
Good luck to all other sufferers.
heather94146 julian18620
Posted
After finding this blog I started gluten free and for me it was worth not eating and drinking my favorite things & I lost weight too. Now, since 2 weeks before Christmas, I am covered again and nothing will make them go away. I did cheat on my diet because I figured, why not- I have hives anyway. Now I'm happily back to the gluten free diet but they aren't going away.
While I was away over Christmas & I got sick & went to an urgent care center. The doc was amazed by my hives more so than the reason why I was there. He didn't understand my "I'm just dealing with it " attitude. I told him if all of my docs had cared as much as he did ,maybe we could figure it out but they just want to say "there's nothing that can be done".
I'm a little down this week too but I am just going to keep trying things and learning from everyone on here!!
KEEP POSTING!!
mark15431 gracIe53
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julian18620 gracIe53
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BUT he totally refutes any notion that diet is involved at all... 100% no in his book and he told me all about research he had been involved with which ran for ten years tyring to prove links with diet but it could never ever ever be reproduced.
Now I am not arguing with anyone... we all must make our own choices.
And I was totally convinced diet was playing a part. But and this is where I find it interesting. Now I saw him again I think it was the day after I posted and following his regime of drug treatments and vitamins (one finding was my vitamin D count was almost non existant) I am eating what I want and on a day to day basis it tends to stay away.
What I have noticed is if I am feeling rundown or a bit ill due to something else then it flares a bit.
I am now on hydroxychloroquine, which you have to satisfy some emzyme test before you can take it... and he said it takes about ten days to take effect and bang on ten days I had the worst diarrhoea I have ever had... by far... had 48 hours which was the stuff of sit coms. Had to be within feet of the toilet and didnt dare go to bed or sleep propelry. Looked up side effects and it's top of the list.
Wondering if anyone else had found this drug worked at all or had side effects like this,
Now it could be that wasn't a side effect so I will try it again.
Current regime then is three fexo a day three cetirizine, one hydroxy... four vitamin D tablets and 25mg of steroid every third day. And with that I just about live a normal life.
heather94146 julian18620
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ann09075 julian18620
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I wish you luck. This is not medical advice, but maybe you can discuss with your doctor and hopefully find a solution. Good luck!
julian18620 ann09075
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julian18620 heather94146
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Perhaps the answer is absolutely nothing.
But I had been vaguley thinking of using my old skills to properly try and design a kind of 'urticaria inventory' to see if it could be possible to tease out information as to similarities between personailty types of those who get it. Obviously this would be non medical, but I can do the behavioual/psychometric side.
I think the first big step with stress to to see that it's external to you, how you react is the key. We're not osysters being stressed into a reaction we can't control to make a pearl. I'd say, in recent years, by far my biggest source of stress has been my oldest (nearly 17). But even with him I try to make myself understand it's my reaction to what he does which causes me a stress reaction, he doesn't directly stress me. YES easily said I know, not so easily acted, but it's a good start.
I don't about you, but completely unscientific, a lot of people I have read are similar in that while they may have had the occasional illness, like I had pneumonia a decade ago and gladular fever a decade before that. They are people who have generally not ever been really ill, as in generally not spent time in hopsital and not people who rush to the GP all the time. Especially as an osteopathm until this and since my pneumoia I had not had anything worse than a couple of days with a sniffle in ten years. Except I have always had teetht problems.
But two keys for me which I can't help but feel are involved is the fact mine came on within five days of returning form a whole month of super hot mid summer weather where I was exposed to high levels of vitamin D... and that I had been going through a bad bout of infected teeth and roots and in fact I still do have an issue with at least three theeth.
wendy62425 julian18620
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Your doctor sounds just like a specialist I went to. He believes that diet or changes of diet is not a factor and will not help. I am now seeing a Rheumatologist for my Chronic Urticaria. I am currently on 200mg of Cyclosporine 100in the morning and 100 in the evening and on a very slow taper of Prednisone now down to 5mg and will stay on that for a few weeks then slowly go off the Cyclosporine hoping and praying for Remission. I am 64 and have had urticaria 2 other times in my lifetime each lasting 2 years then just disappeared with over a decade in between each time with no hives at all plus I was able to take meds like Claritin and Fexofinadine to keep it under control each day with no suffering. This time however the urticaria was severe and was very difficult to control probably due to age, thus the medications they had to put me on for me to have any quality of life...it was horrible...Xolair injections worked after just the first shot then after each monthly shot it wasn't helping so she stopped the shots and slowly started me in the Cyclosporine then needed to go on Prednisone which helped me to be hive free. Have been on Prednisone before and works great until you stop taking it and hives come back. We will see how I do this time as I've been on a very long slow taper. I feel very strong that my urticaria is from stress....breaking down my immune system....each time I had much stress in my life. I have always been a worrier and stressed much...which is not good. I need to overcome and try hard not to stress so much (easier said than done). Let's keep each other informed.......this site is such a blessings to all of us.
I am here in the US.
have a good day to all.
Wendy
Mark1158 gracIe53
Posted
I have suffered for 12 years will the condition. From time to time I am 60% covered in urticaria. When it's red and raised with white skin on the perimeter I know it's grown in when it's just red it's in decline.
Anyway enough of that...
My my research has been relentless. I am happy to advise that I have found that my problem relates to my intolerance to salicylates. It's rather embarrassing that it has taken this long.
I suggest that you red up on this. As a non medical person I would probably not achieve much by to explain all the various reasons why this happens to many people.
The treatment offering the greatest relief is :
glycine : 2 tea spoons 3 time a day
food enzymes a product called " no-fenol " : 2 tabs before eating
magnesium :
vit : b12 , b6 , b2 ,
various probiotics
It's early days but I feel confident that I may have cracked the code.
I am more than happy to refer you to a the various web sites that provide exhaustive information on this.
All the very best for a frustrated Ausie
stinker1962 Mark1158
Posted