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THERE HAS TO BE A CAUSE OF URTICARIA ...

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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

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  • wendy53685
    wendy53685

    Posted

    H I too have had the same problems with treatment < i have spent weeks trying to come of steroids but as soon as i drop the dose , i flair up , my husband found an article on line on a medical sit linking helicobacter pylori to urticaria which when found in the system can affect the healing process causing continues flair ups .m y doctor dint want to agree this but i have been given the test and waiting for the results. hope this info helps

    emis moderator comments: i have removed the link to the blog site, if any user wants it please use the private message service. there is a leaflet here https://patient.info/health/chronic-urticaria which mentions h pylori. i="" have="" spent="" weeks="" trying="" to="" come="" of="" steroids="" but="" as="" soon="" as="" i="" drop="" the="" dose="" ,="" i="" flair="" up="" ,="" my="" husband="" found="" an="" article="" on="" line="" on="" a="" medical="" sit="" linking="" helicobacter="" pylori="" to="" urticaria="" which="" when="" found="" in="" the="" system="" can="" affect="" the="" healing="" process="" causing="" continues="" flair="" ups="" .m="" y="" doctor="" dint="" want="" to="" agree="" this="" but="" i="" have="" been="" given="" the="" test="" and="" waiting="" for="" the="" results.="" hope="" this="" info="" helps="" emis="" moderator="" comments:="" i="" have="" removed="" the="" link="" to="" the="" blog="" site,="" if="" any="" user="" wants="" it="" please="" use="" the="" private="" message="" service.="" there="" is="" a="" leaflet="" here="" [url=https://patient.info/health/chronic-urticaria=""]https://patient.info/health/chronic-urticaria=""[/url]; which="" mentions="" h="">

    emis moderator comments: i have removed the link to the blog site, if any user wants it please use the private message service. there is a leaflet here https://patient.info/health/chronic-urticaria which mentions h pylori.>

    • ben0405
      ben0405 wendy53685

      Posted

      Hi, wendy, sorry to know you have this trouble. actually my girl friend is also getting in same trouble like yours. Chronic urticaria and  helicobacter pylori is showing positive. she is  worrying about this matter, and i want to confirm that wether you get cure by the helicobacter pylori?  your answer will be very appreciated.
    • mimoza35751
      mimoza35751 wendy53685

      Posted

      Hi Wendy thanks for mention,Hpylori,I have been thinking of a link between hives and hpylor  told my doctors and she said no  75 %of the people are positive for hpylori she told me to do. A test ,that I have to pay ,is a breathing test.So now I decided to go do the breathing test tomorrow let's see if it is gonna bring something.

    • January20
      January20 mimoza35751

      Posted

      Hi mimoza,

      Not sure if you responded in another thread, but whatever became of your H. pylori testing? Where you positive for it, and if so did the treatment cure your hives?

  • gracIe53
    gracIe53

    Posted

    Hi Wendy ... I'm sorry to hear you're also having the same trouble. I have gastritis, hiatus hernia and a narrowing in my jejunum and I've been tested for H pylori and it came back negative. I'm not convinced at all that I don't have it. And it's only since I had the gastro trouble that this horrible rash flared up. My blood test C-Reactive protein also always shows up high, which means there is an inflammation somewhere in my body! Duh! I know where the inflammation is - it's in my stomach! But will they listen?

    Well after I wrote the above post, I ended up a few days later with the paramedics in my home and back in the ambulance for another stint in A & E. I had IV steroids again plus IV antihistamines but this time they put me on two weeks oral steroid treatment and I felt MARVELLOUS while on them. TOTALLY ITCH FREE for the first time in four years. But once the steroids stopped, the hives began to reappear but I have managed to keep it under control by taking larger than usual doses of Piriton and Ranitidine with GP's permission. But when they start wearing off, the itch comes back, but as long as I take the antihistamines on time, I'm pretty much itch free and rash free.

    I have been referred to an immunologist because my GP is not happy with me having to be rushed into A & E when this happens - thank God I have a new GP who listens to me.

    I've honestly never felt so well for 20 years. I also have Post Traumatic Stress Disorder and I recently learned that of all things, antihistamines actually help to block out traumatic memories - so there we are! Maybe the rash has been a blessing in disguise. I hope you get to the bottom of your problem too! :-)

    • hanneke54158
      hanneke54158 gracIe53

      Posted

      I've been suffering with daily hives for 4.5 months... The doctor initially gave me a course of fenofexadine but after a month I just got worse so I stopped taking them. They then calmed down, still appearing on hands and wrists every morning when I woke. The doctor then sent me an appointment for the dermatologist at the hospital which finally came through at the end of October.

      Very disappointing visit, didn't see the consultant and all they prescribed me was a 3 month course of Fenofexadine and come back in Feb! I told him I've been on these before without success but he wasn't interested. The prescription arrived last week, I took one and wham, completely covered! Did this for two days then realised it has to be a reaction to the tablets again! Stopped taking them and although I am still getting them daily on my hands wrists it isn't as bad as when i was on them! 

      I really don't know what to do next ... Is it worth going back to my doctor to say what happened at my hospital appointment? Just feel like I'm being completely fobbed off!

      Getting very depressed with this and the lack of support :-(

    • michaela99267
      michaela99267 hanneke54158

      Posted

      sounds like whats going to happen to me, Ive had this for 6 months put on every histamine/ steriod, my life is controlled by this condition and feeling really down. I had the same reaction on that fenofexadine never again!!!Doctor now sending me to a dermatologist, which we all know what the outcome will be ( big fob off).try some of these suggestions as these have worked for other people just not me sad alkaline drops in your water 10 drops in a pint of water. Green juice drink (u tube it ) or look into eating low histamine foods. all worth a try as everybody different. if i dont get anywhere with the derma dr then im going to keep pushing my dr for xeloir shots( think thats how its spelt) as again someone on here suggested that. Just whish they understood how much this ruins your life. good luck its all trial and error from what I can see 
    • hanneke54158
      hanneke54158 michaela99267

      Posted

      Hi Michaela

      I hope that you have more luck with the dermatologist.

      I took with me a month's diary of what I had been eating / doing for each outbreak and he didn't even want to look at it! I told him until I was blue in the face that I had been on Fenofexadine for three months and it just made things worse but he insisted that I have to take it for another three months?! After the latest reaction I am not taking them!

      I have tried the alkaline drops but sadly they didn't work for me. Also spent a fortune on immune boosting vitamins but to no avail. I tried a low histamine diet but again no change .. I am now trying acupuncture which is costly ... I just don't know what my next move will be?!

      I had a blood test for thyroid last week which I am waiting for the results and I am actually hoping that I have an under active thyroid as this may be an answer?!

      nobody understands how depressing this is .... I am constantly told, just ignore them, it will go ... but it is so hard :-(

    • michaela99267
      michaela99267 hanneke54158

      Posted

      try another forum with other peoples suggestions this is all we can do, I totally understand how you feel and very frustrating . My dr says stop ringing him will just go away in time!!! thats why he signed me over to the dermo dr now!!! look into those shots think its xeloir. will let you know how the derm dr went haha!!! I'm keeping a food diary now till app through
    • hanneke54158
      hanneke54158 michaela99267

      Posted

      Oh your Doctor sounds dreadful!

      I will make an appointment and ask about those shots thank you.

      Good look at the derm ... I hope that they can offer you some solution / help :-)

    • marsha66275
      marsha66275 hanneke54158

      Posted

      hanneke54158

      I had this dreaded immune problem also along with angiodema which was swollen lips that grew across my whole lip and side of my faced and disfigured me at the same time suffering from large red angry welts all over my body that started out itching and then burning like shingles.  One visit to the doctor and getting a powerful antihistimine shot and steroid shot which didn't really do anything but make me sleepy.  I went to my naturapath and starting doing research and praying a lot.  Asking God to give me some answers as I needed to work each day and couldn't cover up my face at the office all day.  I was desperate.  She worked with me giving me supplements to build my immune system and also putting me on a hive diet that I tried my best to stay on but wasn't perfect at it.  The problem kept happening but I kept eating the greens and staying away from the foods that could cause problems. (tomatoes, chocolate!,  milk products, etc.)  It was frustrating and discouraging but I had no choice but to keep doing it and praying, trusting that God would eventually heal me.  My body seems to have healed itself for the most part.  My breakouts and swollen face little by little got better.  Went away completely for a time and then once in awhile I'd have a flare up but not as bad.  It's been 2 months since I've seen any sign of it.  I am juicing and eating lots of vegetables every day.  Very little animal fat or grains.

      I know that it's a sacrifice but it's worth it after being so miserable and not knowing when it was going to happen again.  The juicing can get expensive but I am off the supplements so I can pay for more fruits and veggies.  These drugs they keep giving you can only cause other problems and they don't get to the root of the problem which is building our immune system up so that it can fight off the attach against our body.  I did watch Fat, Sick and Nearly Dead a few weeks ago and it confirms all of this to me.  I didn't have a lot of weight to lose but it helped me to lose the few pounds that I needed to and keep it off.  I feel healthier, have more energy and I am so grateful to my LORD for healing me. 

      Hope this helps.

      SpanishSprinter

    • MyGingercat
      MyGingercat marsha66275

      Posted

      Spanish Sprinter - Good on you for getting off those horrid, useless drugs. Food is the BEST medicine, but Dr's and parmaceutical companies doen't p;ush that cure as there is no $ in it! I have been off ALL grains, dairy (including eggs), ALL sugars (except very little fructose) nut, seeds,nightshade veggies, coffee, alcohol, etc. for 6 weeks. My urticaria has improved A LOT!I This former vegetarian is learning how to cook meat again (don't like it) and expect to stick to this for the few months, then reintroduce a few things little by little. For more info, check a book by Sarah Ballantyne called  The Paleo Approach.

      Lucy

    • 13thetigger13
      13thetigger13 michaela99267

      Posted

      Same thing for me, itch itch itch non-stop.  Dermatologist had me on Xolair shots for almost 8 months, even though I kept telling them that they DO NOT WORK!!!!  Fired him and went to another doc.  They put me on Imuran.  Both Imuran and Xolair are pretty dangerous drugs.  The Imuran worked REALLY WELL when paired with an antihistamine (Cyproheptadine HCL).  The trouble is that it takes about 6-8 weeks to start working.  After the 3rd month on it, the doc refused to refill the Imuran because of the danger of the side effects.....said that I couldn't be on it "long term."  Well....it had just started to work so why not give it a few more months to give me some relief????  Went through all kinds of blood tests, nothing wrong there.  I slather on thick creams multiple times a day.  I feel like an ooze-monster.  Take multiple doses of the antihistamine listed above, and it does all but alleviate the itch, but have gained about 25 pounds in 2.5 months and now feel like an obese hog.  I've always been about 145 pounds and I'm 5'8"....now I am pushing 180 pounds.....I don't know what to do!!!!!!!!!!!!!!!!

      Bottom line, I'd stay away from the Xolair, unless you have hives, which is what it is really for.

    • t12693
      t12693 gracIe53

      Posted

      Wow! I am shocked to say the least. I have been suffering the EXACT same problems for 5 YEARS NOW. I was also diagnosed CIU. Antihistamines do not work. Steroids work temporarily. I also do not understand why they can't find the root cause. I miss a lot of work, social events, etc. My nerves are out of control and the level of stress caused from this disease is absurd. 

    • kathy519
      kathy519 t12693

      Posted

      Did you ever get help? They have to find the root cause why dont Drs care enough to help us. I am so miserable.
    • becky77657
      becky77657 kathy519

      Posted

      Do any of you have Silver tooth fillings? I dealt with chronic hives for almost 4 years. I started taking vitamin b12mc. I was told to take 4000 mcg a day. It helped. But occasionally the hives would return. I switched dentists and he told me my old silver fillings need to come out. Turns out I had mercury poisoning. The b12 was helping neutralize the toxins in my blood stream but of course couldn't cure the hives. It did make the hives much more tolerable. My doctor never thought it could be an issue with tooth fillings. I had small cracks under a couple of them a  couple large cavities. They Albany X-ray through the metal so therefore, had no idea what was actually going on underneath the silver fillings. This is something to consider.

    • kpteatime123
      kpteatime123 13thetigger13

      Posted

      My daughter has been dealing with these rashes for quite some time now (years and no answers yet).  She does have a positive ANA - Anti Nuclear Antibody.  This does not mean that she has an illness but there is Lupus(many other illnesses can cause a positive ANA so check also the Anti-DNA for the titer) in our family so if she ever gets symptoms then she should be seen. With that being said, we have set up appointments with the allergist/immunologist and a Rheumatolgist.  We are seeing these specialists to try to get answers about the rash.  I wish all of you the best.  Keep journals and be your best advocate!

      Kristen

    • Smarty10
      Smarty10 kpteatime123

      Posted

      Hi it's not nice I haven't had rashes for over ten years but I itch all over my body everyday some foods can trigger it but it's not easy to find it. My mum had it and so did her dad so it has been passed down . There isn't a proper test for it I have been to everybody with no joy.i know it is to do with faulty mast cells they leak antihistamines all the time that's why the reaction so you need to try anything that can block mast cells but don't try steroids really not good for you. I have more info but I have to go to work so tell me what you think and I will get back to you later.

    • jeremy04366
      jeremy04366 Smarty10

      Posted

      I would advise everyone you get tested for mast cell activation syndrome. It's usually the culprit in cases of rashes like this, especially if triggered by foods. It's also related yo histsmine intolerance

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