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Urticaria and Xolair

Posted , 14 users are following.

vera47921
vera47921

Hi all

I'm at my wits end with my chronic urticaria. Nothing helps - 800g of Fexo a day plus H2 blockers plus high dosage of cortisone everyday. No effect. Eating healthy and avoiding preservatives - no effect.

My Prof who is treating me has filled out a form for me to get injected with Xolair.

Is anyone being treated with Xolair and is it effective? What are the side effects?

Im not concerned that its expensive. Right now I would give my soul for this to go away. Lol. Just would love to hear other people's experience with Xolair so I know what to expect.

thanks

v

0 likes, 27 replies

27 Replies

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  • ann09075
    ann09075 vera47921

    Posted

    I suffered from chronic urticaria, without a known reason, for 16 years. Eventually I was able to try Xolair and it worked the first year.  When I got my hives back a year later, it did not work. I visited a Rheumatologist/Allergist and was diagnosed with an auto immune disease which gave me hives.  They treated me with methotrexate for 6 months and plaquenil.  I had to get off of the medicine because I had unrelated surgery, but my hives have not returned in 1 1/2 years.  I had been tested for allergies and rheumatoid factors, but nothing every was positive so it was extremely frustrating.  However, after explaining my hives, the various medicines I would take (prednisone was the only medicine that would truly calm my hives, yet it did not treat the underlying issue), the Rheumatologist/Allergist knew it was auto immune and confirmed it after testing my blood.  It was so difficult to find a doctor that understood chronic urticaria.  Most doctors, including Rheumatologist, will not know what to do with chronic urticaria so they will prescribe cocktails of medicines in hopes that one will help.  In speaking with several doctors, Xolair has been extremely helpful with chronic urticaria and from what I understood, it is relatively a safe drug.  

    ​Even though I was tested for gluten intolerance and was negative, I did find that by eliminating it from my diet would somewhat help my hives. This may be due to gluten/wheat is an inflammatory food. It may not affect you as it has me and it may take some time to see improvement, but it is a natural modification to your lifestyle that may help you with overall inflammation.

    ​I wish you the best with Xolair and I hope it helps you!

    ​

  • lorraine34338
    lorraine34338 vera47921

    Posted

    Hi Vera, from what I've read from other bloggers it's hit and miss whether xolair works or not. My friend from the US Wendy had been on it but it didn't work for her during this latest outbreak. Her immunologist has placed her on cyclosporine and prednisone and this combination plus some antihistamines has worked better for her and is now tapering off these meds. Alongside meds though you have to work on any illnesses, infections or stress as these trigger urticaria and can work against any meds. Also any stomach problems can trigger it and it's not always food allergy. I had a problem with particles (minute) leaking through my small intestine into my bloodstream which triggered my immune system to act up. L-Glutamine powder, a good probiotic and multi vitamins along with cyclosporine helped me. I wish you luck.

    • vera47921
      vera47921 lorraine34338

      Posted

      Hi Lorraine

      Thanks for your response. Yep I know all about the gut triggers and have been on medication for that for over a year. No relief.

      Im on 800 g of Fexo per day, plus cortisone injection plus Prednisone. Plus H2 blockers. Plus eating clean. Still no relief.

      So Xolair is the next step. If it doesnt work I will try the Cyclosporine and Prednisone combo - thanks for the tip. Although Im trying to stop taking steroids long term. Ive had the steroids on and off for last 2 years - in last 6 months, its been continuous.

      My quality of life is really terrible at the moment.

      Thanks for your feedback

      v

    • vera47921
      vera47921 lorraine34338

      Posted

      Sorry forgot to mention I also had a colonopscopy and gastroscopy to rule out any gut/intestine abnormalities. Was given the all clear.
    • lorraine34338
      lorraine34338 vera47921

      Posted

      Hi Vera! You will need to do a permeability test which is done through a urine test not a faeces test.
    • wendy62425
      wendy62425 vera47921

      Posted

      Hello Vera

      I am the friend of Lorraine.  I have been mostly hive free since last September due to slowly going up on the Cyclosporine until I reached 200mg (I believe Lorraine was able to control hers with 100mg then her slow taper).  Mine were more severe so doctor added the Prednisone...I can't remember what mg I started, but after being on it for a couple weeks (with no hives) she had me going down by 1mg each week so very gradual......it has taken me many months and Cyclosporine slowly from 200mg to 150 to 100 to 50...I am currently on 25mg. Prednisone I am down to 3 mg and will stay on it until my apt. On the 24th.  The key is Extremely slow withdrawal .....to keep your immune system calm.  My trigger appears to be stress.  I have had urticaria twice in my lifetime and was able to manage them with antihistimine both times lasting two years........I am now 64 and this last outbreak was SEVERE!!  Nothing worked...Xolair unfortunately did not work for me.  It did the first injection but was short lived so I stopped after 4 injections. Some are successful but some get the hives back a month or so after last shot.  Hoping Hanneke with stay hive free like  others!  I am in the US.  My doctor is awesome and is at Johns Hopkins.

      Please keep us posted on how you do with the Xolair.  I wish you the best !

      Take good care

      Wendy

      p.s.  I did have some hair loss with Xolair......others did not... but wanted to share.

  • hanneke54158
    hanneke54158 vera47921

    Posted

    Hi ...

    I couldn't take antihistamine treatment as once my urticaria started, almost three years ago, it made me allergic to antihistamine - seriously?!

    I have just had my last Xolair injection of a 6 month course and ... Thankfully for me ... It has been a miracle! No hives since the first injection and no side effects! I'm a little scared as to what will happen in four weeks time when I don't get another jab but I'm keeping everything crossed!

    I dread going back to how I was 6 months ago...

    • vera47921
      vera47921 hanneke54158

      Posted

      Thats awesome. SO happy for you. I imagine its like getting a new lease on life! Please keep me updated as to how you progress without the monthly injections.
    • wendy62425
      wendy62425 hanneke54158

      Posted

      Hello Hanneke

      please let us all know how you are doing after your last Xolair injection!  We wish you the best!

      wendy

    • hanneke54158
      hanneke54158 wendy62425

      Posted

      Thank you Wendy

      I will ... Still completely clear but it's only two weeks since my last injection. The start of Sept would be the time id be due my next but obviously my course has come to an end ... The consultant said if anything will start up it will be mid sept so watch this space! GULP!

  • becky77657
    becky77657 vera47921

    Posted

    I dealt with chronic hives for almost 2 years. Head to toe hives. It was awful. I went to 5 doctors and no one could help me. They put me on prednizone. Prednizone made it worse. I did acupuncture and that gave me some relief. I did the probiotics and l glutamine thinking it was a digestive issue. It turned out all it was was a severe b12 methyl deficiency. I am now on high doses of b12 methyl. I take it in a dissolvable pill form from a natural vitamin store. I have had no hives for 6 months. I avoid ibuprofen and caffeine and alcohol. Those things make the hives worse. Way worse in my case. Once I started the b12 methyl it was 4 weeks and I no longer has any hives. However, I was told it could take several months to rebuild my red blood cells to a healthy state. I felt so angry and yet so relieved that it was something so simple. My life was hell with chronic hives. I feel so much better and stronger. I sleep so great. I also included an iron supplement. I hope this helps. A severe vitamin b12 defiency can lead to serious medical conditions. Also, chronic hives are associated with severe b12 defiency,
  • ann09075
    ann09075 vera47921

    Posted

    Ask your doctor for an autologous serum skin test to rule out any auto immune disease related to your urticaria.  They will draw blood.  Then, they will inject you with saline, histamine and a serum of your own blood.  If you get a hive from your own serum, it may be auto immune related.  Good luck!
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