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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jana94738 michelle55235
Posted
yes mine took over six months to start to work possibly almost a year.. but then all of a sudden no hives at all for over 2 years .. if you can stick with it.. in two weeks i still had lots of hives and was ready to stop but did not want to go back to prednisone so hung in there and glad i did
michelle55235 jana94738
Posted
thanks for the reply jana .. were your hives as bad? im just wondering if the full blown extent has anything to do with how long it takes to work or whether it simply works for some people and not others..
jana94738 michelle55235
Posted
My hives were horrible on my face ,in my hair, arms , legs, between my legs, everywhere once sending me to the hospital as i also have bad angioedema and carry an epi pen .. My hives got as big as silver dollars then ran together like welts.. I woke up every morning with hives and during the day they got a tiny bit lighter with lots of drugs but at night started all over again.. It was a nightmare from hell.. I could not wear any of my clothes I wore light knit lularoe leggins and loose tops , at home only gowns.. The only thing stopping them is the xolair...
michelle55235 jana94738
Posted
sounds terrible and so similar to mine.
at first they gradually disappeared during the day but now i have them all the time as being replaced by new ones.
fingers crossed for xolair
jana94738 michelle55235
Posted
Yes if you can hang in there it did work for me..
michelle55235 jana94738
Posted
did anyone find their rash went worse just before they were due next injection?
im due mine on 27/12 and rash is quite angry again today and getting facial swelling daily now
jana94738 michelle55235
Posted
yes this happened when i first started them it got really bad before now all i have is itching and i know I need my shot
michelle55235 jana94738
Posted
thanks for reply. how long did you have hives before you got xolair?
also you ever find cause?
so you just stay on xolair forever or do they stop it?
in uk a patient is on it for six months then stops to see if its gone into remission, where do you live?
jana94738 michelle55235
Posted
About a week to a few days before the shot i would get hives..I have been on the shot for 2 years as each time i tried to extend it to see if I could go off I got bad hives again.. The nurses who give it to me told me it is not a cure only a bandage and the hives are probably still there.. they have never found a cause for them ... and I have tried everything.. I live in the USA.. They also say once you go off the shot and the hives come back and you try xolair again it doesnt work.. Now i dont know how many ppl this has happened to but one is enough for me to just stay on it.. I had such bad hives they were unbearable I had hives for about a year and a half before i went on the xolair..
michelle55235 jana94738
Posted
do you get the angioedema too?
jana94738 michelle55235
Posted
Not since i have been taking xolair but before that yes
michelle07282 michelle55235
Posted
hi michelle, i have been having xolair for 2 and half years now and it has made a huge difference over time. tried so many different meds but now my medication all together seems to work. i have certirizine 4 a day, Ranitidine, dapsone, montelukast, and the injections every 4 weeks at the hospital. i do still get swelling in my eyes every day and i do find leaning on a surface for some times or carrying heavy bags i will get swelling in the area or deep indentations, but as far as the hives, it has made a massive improvement.
nit sure if the pic has uploaded but this would be me every day all over from my scalp to my toes.
jana94738 michelle07282
Posted
Hi MIchele
Are you saying you still have to take all those other meds along with the xolair?? Have you tried not taking them since you get the shot.. I have been getting the shot for the same amt of time you have and have stopped all antihistamines unless i m itchy occassionally and my hives looked like yours from head to toe
michelle07282 michelle55235
Posted
yes im still on all the medication due to me still swelling and the odd hives but nothing like i was. the hospital have decided if it stops all outbreak to keep it under control. also have you been told nit to take and antinflamatories ? i wasnt told this until a year after. these make you mast cells leak and attack your skin which causes a flare up. if your still having hives you shouldnt be left with just antihistamines as its horrible as you are the one who has to live with it. they need to get it to a place you feel comfortable with. i have delayed pressure urticaria which i know is the hardest to control. i had to pay fir one appointment private to get my diagnosis. before that they kept saying it was idiopathic urticaria
jana94738 michelle07282
Posted
I am not having any breakouts at all since i just take the xolair shot for over two years.. occassionally i have itchy skin which i will take a benedryl for .. But i feel wonderful since only taking the xolair .. what antiinflamatory are you talking about.. do you mean tylenol