I have been hive free for a month and a half since getting on Xolair
Does anyone else who is in remission have dreams about the hives coming back? Well, more like nightmares 😬 I have been hive free for a month and a half since getting on Xolair 🥳 it’s amazing but I have had 3 dreams now where my hives have come back with a vengeance. The fear is real! Anyone else?
Been in xolair for 2.5 years and had a super itchy day about a month ago that made me fully freak out. Then I had a horrible nightmare. I was covered in hives just like the real life nightmare I lived for years. Thank god I woke up and it wasn’t real. I will always have that fear though. I know without xolair I’d be a total disaster
Yeah that must have been so scary! I am so grateful for Xolair
Renee Cobb will you have to be on xolair forever or will you eventually be able to taper off?
Sheena Gallegos yeah that’s a great question which I am also wondering. I’ve heard from some people that they were able to taper off, and the hives did not come back. I have also heard from many people that as soon as they try to get off it, the hives will come right back. So some people have been on it for like 20 years since it came out. I am hoping I can go off it. Will try to extend shots after 6 months and will see how it goes
Sheena Gallegos I’ll take it as long as it’s approved and as long as I can feel the itch underneath. I’m still trying what I can to get to the root of my CIU. At this point I feel like it’s hormone or gut related or both. I xolair stops working or I have to go off I’d seriously probably get a hysterectomy. I cannot go back! I had years of absolute misery and fully body flares that never ended. Until xolair.
Renee Cobb day 1 of my cycle but have been sick with a virus and flaring for a couple days now
Sheena Gallegos oh you poor thing! My flares last for years. It all started for me in 2015. I had one good year of remission during that time. Xolair has been the only thing that helped me. Even on xolair I could feel my body flare up for 3 weeks after I’d had the flu last year. I can’t imagine how awful it would have been without it. I probably would have been in the hospital. Good luck. I really hope you find something that helps. I’m still itchy so my next step is probably trying the low histamine diet. Probiotics have helped me some too. I have no visible hives but I still itch terribly sometimes
Renee Cobb I got a gut test from viome and had good results following their recommendations but I have been eating poorly since thanksgiving 🤦♀️
Sheena Gallegos what were their recommendations?
Renee Cobb recommendations are based on individual gut biomes
Sheena Gallegos I think I need to add that to my to do list. My specialist is 6 hours away and isn’t very informative. I went undiagnosed for a long time and I feel like it’s up to us to keep searching for answers. My specialist told me to stop looking for answers but I’m not having that
My first breakout and 13 docs never figuring out what was wrong with me almost 24 yrs ago. They went away as fast as they came.
I was getting dressed for my dads funeral in 2017 and and felt a familiar itch on my arm and they were back. Thanks to FB (finding this group) and researching CIU…I figured out what I have.
Non stop since 5/2017.
I tried one round of prednisone and it didn’t touch me. I refused to take it again. Daily Zyrtec, now Pepcid (was on Zantac until
the recall) and Doxepin…..😔😔😔😔
Kimberli Vann gosh that’s crazy they can switch on and off just like that. Have you tried Xolair?
Brianne Cody no I don’t like all the side effects I’ve read about.
Absolutely! Every little itch, tingling, skin anomaly stops my breath for a beat