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Chronic spontaneous urticaria

Posted , 10 users are following.

michelle55235
michelle55235

hello all.

im new to the forum and posting because im seriously have no hope.

i hadnt even heard of this condition until i was diagnosed four months ago.

so summer hols in paris during the 40 degree heat, but weve been hotter places, and several insect bites, to which i always have a reaction anyways. anyway all ok had small rash under the skin which didnt even look like urticaria from the heat but that vanished within hours.

so we return home and get stung again this time on my arm by some unknown bug then carried on with usual summer, swimming etc, then 15th august everthing changed.

covered in a rash all over my thighs.

went to gp who said it was urticaria and to take some antihistamines and it would clear it.

it didnt .

sure enough the rash appeared every morning and would fade by lunch. then it stopped fading. i have the rash permanently in some form or other. the wheals will fade but new ones appear all the time.

i was referred to immunologist who just told me rather frustratingly that it appeared to be idiopathic as it was appearing everyday and just to take antihistamines and to re refer if the antihistamines didnt work.

sure enough i was re reffered and have started on the xolair but it made no difference although its been only two weeks but i have read people received instant relief. has anyone found ot took a delayed response for them to work?

i am taking antihistamines every two hours and am currently on my 9th steroid tablet to reduce the urticaria but nothing is workingn.

previously the steroids worked after two days.

so sorry for the long rant but i dont know what i can do living with this every single day.

image

0 likes, 25 replies

25 Replies

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  • jfyiah
    jfyiah michelle55235

    Posted

    Hello Michelle,

    I posted this on another post I'm following. Hopefully it helps you or others.

    I struggled with Hives since middle school especially after a getting a virus. Initially it went away after a week. In college I discovered it started taking longer so thought it was food related. I cut everything off my diet except chicken and rice. Eventually it went away. After college I tried a variety of antihistamine and it controlled it. Last year after a bout with cold I again started getting hives and again I did the antihistamine, but this time it did not go away...for a year! I did everything again to get rid of it and again cut every food from my diet and lost 10 lbs. but still no results. One day I got the flu that lasted 2 weeks. When I finally got better from the flu I also noticed that my hives had disappeared. Two years later, I got a cold and again my hives returned. It wasn't until after a month that I finally really thought about what was it with the flu that made my hives disappear. It dawned on me that I had loaded up on vitamine C (Liposomal type)! After realizing this, I took 5 1000mg a day for 3 day and my hives dissappeared. I continue to take vitamine C for health reasons. I hope this helps out others. When I was struggling with hives, I was so desperate that I would try anything. I wish someone would have mentioned vitamine C. I hope the best for you.

    • michelle55235
      michelle55235 jfyiah

      Posted

      thank you everyone for the kind replies, its very kind.

      hearing other peoples stories is really helping.

      so just an update..

      ive been off the steroids for a week now and the hives have remained at a lower level. initially i thought it was the steroids but they never did go all together his time.

      last time i took the steroids they cleared up after the second dose but this time they never did.. so im assuming the xolair is kicking in.

      i stopped the steroids at the two week mark after my xolair...

      however i still get hives daily and the facial swelling.

      i dread waking up to find what state my body will be in.

      fingers crossed the xolair is kicking in and not the back end of the steroids.

      i have my next xolair on 27th dec day after boxing day.. it certainly will be a different christmas this year 😦

  • sophie12245
    sophie12245 michelle55235

    Posted

    Does anyone find cold gel packs work? Its the only thing that gives me a bit of comfort but not sure if its making it worse?

    • michelle55235
      michelle55235 sophie12245

      Posted

      as random as it sounds the only thing that gives me any relief is a red hot bath..

      as bizarre as it sounds it really takes the edge off it.

    • desmond01416
      desmond01416 sophie12245

      Posted

      I use 1% menthol gel (Deep Freeze) at night. it helps reduce the sensation of itching which helps me get to sleep easier.

      I posted this elsewhere. But I've been doing a bit of reading into Vitamin D supplementation for autoimmune conditions.

      It is interesting. There's been some studies in the past showing a benefit for Vitamin D in reducing severe Asthma severity. And more recently again, similar studies hinting there might be similar benefits for Urticaria. Though, unlike Vitamin C, you have to be careful not to take too much Vitamin D (< 4000 IU and might need levels checked). Also been some studies on Vitamin D helping in seasonal depression, and more recently research has been looking with great interest at potential autoimmune root of depressive illness too.

    • desmond01416
      desmond01416 sophie12245

      Posted

      I use 1% menthol gel (Deep Freeze) at night. it helps reduce the sensation of itching which helps me get to sleep easier.

      I posted this elsewhere. But I've been doing a bit of reading into Vitamin D supplementation for autoimmune conditions.

      It is interesting. There's been some studies in the past showing a benefit for Vitamin D in reducing severe Asthma severity. And more recently again, similar studies hinting there might be similar benefits for Urticaria. Though, unlike Vitamin C, you have to be careful not to take too much Vitamin D (< 4000 IU and might need levels checked). Also been some studies on Vitamin D helping in seasonal depression, and more recently research has been looking with great interest at potential autoimmune root of depressive illness too.

    • desmond01416
      desmond01416 michelle55235

      Posted

      I have cold urticaria. And a very hot shower after getting hives out in the cold does help make them go away quicker.

  • michelle55235
    michelle55235

    Posted

    merry christmas everyone!

    have to say ive been dreading this day for weeks and with good cause... urticaria and angioedema worse its been for days..

    its exploded everywhere ..

    need to survive to 27th for 2nd xolair jab!!!!

    fingers crossed the flare in symptoms is due to needing the injection!!

    although the rash and swelling never went at all

  • craig17731
    craig17731 michelle55235

    Posted

    HI Michelle, just picked up on your post, not sure of your age etc, I had Chronic Urticaria + Angiodema for 4 years and by chance, after complaining to my doctor about a sore stomach, he suggested I have a colonoscopy. After having the prep meds and the procedure, my condition disappeared immediately.

    Previously, I had tried every medication available and lived on ZERTEC morning, noon and night.

    4 months later, still no signs of a return and have still no need for medication.

    Trust the above helps, and good luck.

    Regards

    Craig

    • michelle55235
      michelle55235 craig17731

      Posted

      hi craig

      thanks for the reply. im still battling on everyday.

      its interesting isnt it?

      im actually due to have a procedure on 29th jan under general anaesthetic but thought about postponing it sue to the urticaria and angioedema but it may help right?

      i have thought these things kind of reset you.

      well done and hope your remission carries on.. im yet to find mine

      x

  • craig17731
    craig17731 michelle55235

    Posted

    Michelle, I certainly wouldn't postpone it, I was also worried about the effects of the pre med etc, there was absolutely no problem whatsoever, you have nothing to lose.

    GOOD LUCK

    Cheers

    Craig

  • michelle07282
    michelle07282 michelle55235

    Posted

    hi michelle , my heart goes out to you. ive had this for 2 and half years and that first year was the worst. trying to get a real diagnosis and help makes you want to pull your hair out. just antihistamines alone with steroids wont work. there are other medications to try that a good dermatologist can recconend that can help. its a long process to find what suits you. i find the injections with 4 cetirizine a day, dapsone, ratinidine, really helped me. but i went through trying a whole load of medication before finding the right ones. there are also different types of urticaria, so finding which one will help what path to follow. imageimage this is what i would look like with a bad flare up. my face would be so swollen from hives in my scalp that i gave a few people a fright. even my children wouldnt know me which caused me distress as i looked rather frightening. i found i was staying in doors and felt i needed to hide from the world as i didnt want people to see me like this. i didnt find much support out there but when i found this web site it really helped sharing and listen to peoples advice and kind words. hope your getting help, and we are all here to listen. x

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