chronic urticaria and fed up!

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hi, posting for any support and info! I have been suffering with CU for last 7 months - it originally began with what I thought was an allergy to my daughters guinea pigs - had hives on 4 occasions when holding them and one occasion had sever lip swelling, however blood tests to guinea pig hair came back negative! Now wondering if the cause could be hay or chemicals used to fertilise the hay. Anyway, since then I come out in hives all over upper arms (never anywhere else) around 2-4 times per day. Originally x2 daily certirizine helped, after a few weeks stopped helping, then tried cimeditine with cetirizine, again worked for 2 weeks then stopped, dermatologist prescribed high dose of fexofenadine 180mg x2 per day and hydroxozine 25mg at night... and guess what? worked for 2 weeks then hives came back. Have had 5 blissful days on steroids inbetween as I was at a point where I could no longer cope - I am back at that point! Finding it utterly debliltating, Im knackered and grumpy and also suffer from pretty bad atopic eczema which flares horrendously with the CU. I am back at dermatologist next week and when i asked last time about the plan if fexofenadine failed they said would most likely be cyclosporin - I am at a point where I am more than happy to try this and am fully aware of potential dangers of taking it, but I fear I may become depressed if this carries on!

Has anyone else taken cyclosporin for CU? Also has anyone had an ASST test? I understand this is usually to confirm auto immune CU.

Thanks in advance

x

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11 Replies

  • Posted

    Hi  Amey,

    Sorry to hear what a difficult time you are having of this. 

    I can pose a couple of questions that might be helpful to you.

    Has the dermatologist you have seen thus far, tested you for the Mastocytosis disorder I referred to in my posting recently ? There are a number of ways he could test for it. You could suggest he refer to this article for ways to test for this

    ' rare' (but more common than earlier believed !) entity. Here is the link for that:

    www.tldp.com/issue/210/roleoftheb.htm

    But it might be beetter received if you print it for the dr.and hightlight the most important areas - tests section,  and opening or concluding paragraph. it is written by a Dr. Gunner Heuser. (MD).

    Also, since you keep having exacerbations after two weeks, it may be that your body is developing a tolerance for the medications much sooner than usual. Perhaps, you could consider rotating the meds two weeks on one than after you have done one cycle (of the tree or four of them), you repeat the cycle. Thgis could proide you with ongoing successful coverage.

    Another suggestion is based on the comon finding that you might be very ensitive to medications as well. If this is the case, try starting each medication at the very lowest recommended dosage. This leaves you the option of increasing the dose as needed.   

    Finally,  I cannoty emphasize enough how much DIET  is so critical here. You can take all the medications in the world, but they won't  be succesful in the longrun unless you identify what is  CAUSING  the problem in the first place. It is like putting a bandaid on a cut with glass in it. Unless you ID and remove the incitat, the glass in this case, the bandaid is oly partially and temporarily of any benefit.

     Often, it is a matter of excessive HISTAMINE in the body that is either consumed (drugs, or foods, even bottled water. This is because some people like myself can be sensitive to a component of the plastic ineverything. There is also a highly specialized test for that which is not doen rtoutinely at all labs. Also topical substances such as skin creams, shampoos, latex in gloves and a host of other products (ie support hose, etc. )...anything could potentially be a trigger. You need to be your own investigator. So start off methodically keeping track of everything inn a diary. Start first with the (most likely) foods, then cnsider which medications you are taking. Many have filler andn additives that you might be sensitive and reacting to. Even the ones that could potentially help you. For example, try another antihistamine if one bothers you. There is what is referred to as the active ingredient (the atual part of the drug that acts to accomplish its intended goal. This usually is ok but must be observed for reactions as it varies in the percentage contained in that particular brand (ie. 70% versus 85%) .

    Paying attention to this could help but you must be careful with the fillers, additives and colorings. They might be the problem.     

    If your present dermatologist is not board certified, find one who is reputable and is. Don't be afraid to look until you find one who specializes in Mastocytosis or whom at least is familiar with it and has some experience working with patietns who have been identified and treated. They woulkd validateyour legitimate concerns, work collaboratively with you, listen to you , and  actually be of real help to you. 

    Hope that this helps. Stay in touch and let me know if this does make a difference to you . When it does, this sort of thing really makes my day ! Best of luck for now. 

    Rochelle

     

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  • Posted

    Please try Xolair shots, I had horribly hives for months and months that wouldn't go away with diet or anything. It is a fairly new medicine, but I saw results right away. I have gotten the shot 4 times now, (4 months) and I haven't had a hive in weeks!
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    • Posted

      Hi jill43168, can I ask what age you are roughly as we are thinking of these shots for my daughter who is a 12 yr old competitive swimmer but I am very concerned at how young she is. Also did you have any side effects at all? Thanks
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    • Posted

      Hi

      I am about to get my first shot of Xolair next week. I have a chronic heat and solar urticaria.

      Can you tell me if you had side effects after taking Xolair? How are you doing now?

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    • Posted

      HI Daniela,

      How was it taking a Xolair shot?

      Has it helped?

      Do you feel any side-effects?

      My mother has severe solar urticaria and any information on a treament that could help is great news

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    • Posted

      Hi,

      i am schedule for my first shot of Xolair on April 27. I am very hopeful .

      it has to work! I will let you know. 

      😄

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  • Posted

    hi there ive had CU for 4yr now i have been prescribed almost every type of antihistmine out there aswell aswell as hydroxychlorquine which is an anti malaria drug which worked for 1st few months then medication changed to Cemetidine & tested for sstomach bacteria H pylori which i tested positive for . During this process my urticiara got worse there was not a part of my body not covered ended up in local hospital . I was then put on Prednisolone which i am currently still on & on top of this a drug called Dapsone as cyclosporin is not an option for me as i had skin cancer few yr back. I will keep you posted on any further treatment good luck.
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  • Posted

    Hi there,

    I had Cholinergic Urticaria a couple of summers ago for a period of 6 months or so. As with most people, I tried all the antihistamines and none of them made a massive difference - although I go by levocetirizine tablets if I had to choose. For me, excessive heat, sunlight and stress/ embarrassment caused me to flare up to the point where I would rather stay inside and avoid the world and pain as much as I could.

    However, I believe you can do a few things to help get rid of urticaria. For me, this was going back to playing badminton, which I avoided for a long time due to the worry of exercise heating up my body and causing painful hives. But playing sports was one way for me to relax and definitely lifted my spirits. Another thing that helped me was to drink excessively one time amongst my friends at university - again to reduce stress and I think that's what helped me. I don't mean to promote excessive drinking but in the context of stress relief and the possible benfits, I believe it is worth a try when nothing else works.

    I hope you and everyone else with this debilitating condition are able to overcome it in short time.

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    • Posted

      Hi,

      Thank you for the info. However, I have had solar and heat urticaria for 4 years and nothing I have taken helped. I have done all type is tests; from inmology deseaces to food allergies and everything is OK. I have taken all type of antihistamine for more than a year and they do nothing .

      I was accepting my condition . However , after going to the third allergist, he recommended Xolair. My Egg test are also Ok.

      I will take my first shot the 27 smile hope it works .

      Thanks

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  • Posted

    Just thought I'd post to let you all know where I am with my treatment. Xolair shots are not available where I am seeing a dermatologist so I've gone down the ciclosporin route, started it on 2nd jan & I've had promising improvement, had a couple of weeks where I was totally eczema & urticaria free but now I'm still suffering occasionally, I can take up to 3 fexofenadine daily if needed & I always need to if I've been exercising makes my skin horrendous. Haven't had too many awful side effects - slight raise in blood pressure & the only infection I've had was a chemical burn that got infected.
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