Posted , 11 users are following.
what have peoples experiences been with this drug?
i was told to expect a response maybe within 2-3 weeks after first injection, which i had exactly 2 weeks to the day!
and nothing my hives are still horrific!
did people find it took a while to work?
i feel like this is my last hope
1 like, 34 replies
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sneha_56997 michelle55235
Posted
sorry Mic , i am not aware of others experience..but to whoever doctors i gone they told me that my case is rare in India and its severe..
they have also given me "avil" injection and other one i think so hydrocortosine.
suze81 michelle55235
Posted
The problem with this condition is that it is so random. Xolair worked for me the next day, but my dermatologist said that it could be up to a month, and I think she was surprised it worked so quickly.
Try and not to get stressed, easy for me to say, but it definitely made my hives worse.
Fingers crossed for Xolair to work for you.
michelle55235 suze81
Posted
thank you so much for the reply.
so your hives went straight into remission after that?
did you ever find cause?
suze81 michelle55235
Posted
It was triggered by a tooth abscess which, unfortunately, had to be treated with 2 consecutive courses of antibiotics. I suffered for the full 6 weeks, took steroids and antihistamines to no avail, and it was confirmed as chronic idiopathic urticaria.
I discussed possible causes with my dermatologist, should I try an elimination diet? She looked at me indulgently and gently explained that I could spend years trying to find the culprit, 'just eat and drink what you want, it won't make any difference'.
I have my own little theory though. Now and again, after eating, I get a strange gurgling in my stomach. There is no specific food that triggers it, but I avoid stressing my digestive system, for example, by over-eating. I can't help thinking it's related to my alimentary canal somehow, the 'perfect storm' of the tooth infection and the subsequent antibiotic treatment has messed up the balance in my gut.
I self inject Xolair once every 12 weeks (originally every 4 weeks) and I started the treatment in June 2018.Keep positive, it's such a horrible condition but you have come to the right place to talk about it.
michelle55235 suze81
Posted
thanks suze for the reply.
its so helpful to find other people going through the same thing and have been coping for years with it.
i honestly dont know how you all get through it.. these past 4 months have been horrific
jana94738 suze81
Posted
Where do you live that you can self inject the xolair.. I have to go to the hospital to get it.. I would love to give it to myself
suze81 jana94738
Posted
I live in France. my doc didn't bat an eye when I told her I was self injecting. A nurse friend showed me how. I pick up the xolair from the pharmacy . I can't see it's any different from a diabetic injecting themselves tbh.
jana94738 suze81
Posted
True i wish they would let me do that here.. I have to drive an hour one way to an infusion center.. or my insurance wont pay
desmond01416 michelle55235
Posted
You probably need to give it more time. Might take more than one shot. And even if it doesn't work, there are quite a few other treatments, such as various kinds of immunosuppressants / DMARDs.
bee11 michelle55235
Posted
Hey Michelle!
I've been doing 300mg xolair monthly for 1.5 years for autoimmune urticaria. I noticed mild relief within a few days, and full relief (no hives) within 3 weeks so hang in there! Are you taking anything in addition? I was also taking singulair, and was able to stop that once the xolair kicked in. I will occassionally get 'hot spots' where i feel itchy and hot, they dont erupt into full hives, but my doc told me to take a zyrtec when that happens and the zyrtec knocks it right back down. So its like the zyrtec just helps with any random breakthrough. Maybe ask your doc if taking something oral along with the xolair would help provide more hive relief!
michelle55235 bee11
Posted
thanks so much for reply!
i take levocetirizine 5mg every 2 hours and am currently on my 9th day of prednisolone to calm tgis episode but its not working!
just at my wits end with it, and im scared that since this major flare has come after the xolair its a sign its notgoing to work!! 😦
desmond01416 michelle55235
Posted
Might be worth trying Fexofenadine maybe? I take that 4 times a day and found it more effective than the other antihistamines, apart from super sedating ones like Atarax and Doxepin.
jana94738 michelle55235
Posted
I had that exact same thing happen to me and i was so upset as i had been hive free and taking xolair but i continued thru that bout and now i m hive free with the xolair for over 2 years.. if i delay my shot the hives come back so once you start it seems you cant stop
jana94738 bee11
Posted
I too still get itchy sometimes with no hives but feels like they want to start but i too take an allegra or benedryl and it stops the itching if it is really awful i will take a doxepin or hydrozine but it is only to stop the itching
michelle55235 desmond01416
Posted
thanks desmond but i tried the fex in doses of 180mg x 4 a day in combination with the levocetirizine and didnt find that they made a difference..
im surprised the consultant didnt mention stronger ones.
although hes told me that i have to wait for the xolair to work as it could take 3 months even though at my first appointment for first injection he did said i would notice an effect after 2-3 weeks...