hives

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i just was diagnosed with chronic urticaria.  I have been suffering with this for almost 4 years and after numerous tests, biopsy, medications both topical and oral; they feel the only solution is an injection of Xolair.  Has anyone been put on this drug, reactions, side effects, etc.  The hives are red, itchy and sometimes come to a head with pus - all this on my face, head and neck.  All allergy tests come out negative.  To date I have had 195 patches applied to my back, in a hospital setting, all were  negative; doctor said "oh maybe its dust mites".

Has anyone suffered from this condition and if you have, please give me your input 

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  • Posted

    Hi there Elaine, where are you from the US? I am UK and had it similar amount of time before I was diagnosed. It seems Xolair started being used quite often when nothing else works, but Cyclosporin was recommended for me. I was about to start this anti rejection drug when the urticaria ceased being the same sort of problem as previous. I have had bouts of pressure urticaria but steroids have helped with this. I am pleased I had neither the Cyclosporin or the Xolair, but do understand both or either can be of benefit.

     

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  • Posted

    Hi Elaine, I have been suffering for over a year but I have been able to control my symptoms without xolair, I was tested for just about everything from lupus, allergies, arsenic poisining you name it, what I did find out was that I homosysteine is high which is a toxin, I have a genetic disorder C677T and a huge vitamin issue, but besides that I started wearing organic cotton from Pact and synergy which are affordable or 100 percent cotton and sheets and all bedding must be 100 percent cotton, although it took me 6 months to heal I am in great control as long as I do not use synthetic materials. I also use hydroxyzine to get me back in control incase I get into something i regret, I hope this information helps. 
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  • Posted

    I see you have had lots of testing. I also suffer from chronic urticaria, but  have not taken Xoliar yet, so I don't know about the benefits or side effects. I have not been able to find out whats causing mine. My Ige test indicate that I am  moderately allergic to wheat and egg whites, but my doctor said thats not causing my hives.  I have been using Doxycycline, Ciprofloxacin, Xyzal, Benadryl  and some others I can't remember at the moment. Right now I am on Prednisone, Claritin, Benadryl, Doxepin and Xanax. The Doxepin has been great for controling the itching. It's also, an antidepressant and anxiety medication and will help you to fall asleep and stay asleep. If you can sleep well without medication, then thats great for you.   One of the triggers for this disease is "stress" . Please don't underestimate that trigger. 

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  • Posted

    Hi Elaine, sorry to hear you are suffering with this condition. I also have it for last 2 years with no real answers! Diet and destressing help, as has my current pregnancy! Hormones seem to be helping right now. I have also been advised of Xolair. I am booked in for after my baby's been born to see if I will go ahead with this treatment. I personally think the side effects seem better than that of cyclosporine and if my hives come back the way they were after birth I will definitely be giving them a go! If you have a scan through previous threads you will find quite a few discussion about Xolair and those who've tried it! Good luck xx 

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  • Posted

    Hi Elaine

    I have had Chronic Urticaria several times in my life each time lasting about 2 years then gone as fast as they started with decades of no hives in between.  When I was younger I could control them with Claritin each day.  Then another time with Allegra and Zantac......however this last time the Urticaria was so severe..quality of life was very bad and doctors were not able to control the hives until I found a wonderful doctor here in the states. Prior to that my other doctor tried me with the Xolair injections.....it worked after the second day for awhile then did not work.  After the third injection the doctor said it just did not work for me.  I have heard it helping some people but not others and if it worked for some, when the injections stopped the hives started weeks after.  The doctor that helped me put me on Cyclosporine very slowly until I reached 200mg...the hives improved but my case was so bad she added Prednisone which took away the hives completely....from there she VERY slowly had me go down on both....took over 6 months to go down on the Cyclosporine and a year with going down on the Prednisone.....I was down to 1 mg of Prednisone for weeks...still hive free....".unfortunately our family was going through a very stressful time and I unfortunately started breaking out in hives again but have been able to control to hive free again after adding Allegra.  Diet and stress plays a big part of Urticaria.  Eat healthy....decrease stress as much as you can.....drink lots of water.  A friend of mine in the U.K. was able to get her hives under control with only 100mg Cyclosporine and did not need any Prednisone...she too is doing great.  Neither of us had any side effects on Cyclosporine.  I hope this helps.  This blog is such a blessing to share what may work for others.

    keep us posted...would love to hear how you are doing.

    Wendy

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  • Posted

    Hi Elaine. Yes I have had 2x xolair shots but unfortunately they have not worked for me. Having said that the first shot I have I do not have any symptoms but the more I was having the less effective they were becoming. For others it works so don't be dismayed but it is expensive and you can only have so many in a year. I also have delayed pressure urticaria which is difficult to treat anyway.

    I have been suffering for 8yrs and have been on numerous medications none of which has really worked for me. I wish you luck in finding something that works for you. My symptoms are different to the ones you've described. I have loads of wheals that turn into one big swelling where I experience pain and pressure. I do not get any on my face but rest of my body is affected and majority of the time it affects my hands and feet. It has had an great impact on my life as I am left unable to do everyday chores or enjoy the things I used to do. It has changed my life considerably for the worse. I live in hope as I need to have a positive approach as I hope you will.

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  • Posted

    Yes I went through the same as you at times i wanted to give up. Then finally i was diagnosed and started on Zolair shots.  I was really worried to about the side effects but I don't have one side effect from it and my rash was almost gone.  I feel so much better but it's my 6th one and it feels like it's coming back so i'm thinking of going back to clean eatng even though they say it has nothing to do with food but it helps alot.  Good luck to you.

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    • Posted

      Definetly eat clean Rose.....so important to do that for our bodies.  Please keep everyone posted on how you are doing.  If Xolair stops working please ask your doctor about what I have shared earlier with Cyclosporine and how it helped along with Prednisone......although for many,  Cyclosporine alone worked for many.  My Urticaria was so severe that I needed both....the key is slow going up on it and extremely slow going off it.....takes months.....but many are hive free.

      i wish you well.

      wendy

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  • Posted

    Not sure about eating clean, but eat for your immune system without doubt. So google foods that assist the strong immune system and as far as you can follow. Good luck.

     

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