Hi all so I have not forgotten this idea of research. While trying to wash my hives away in the Monterey Bay this weekend (potentially successfully we will find out tomorrow morning) I had an idea. I think our first research question should survey the group about Xolair outcomes. Anyone brave enough to posit a hypothesis? Here is one to get us started and I will do this in Survey Monkey this week. Couldnt figure out how to use FBook polls.
Hypothesis 1: Xolair works prophylactically for most CIU patients but only after 4 months of 300 mg doses.
earlier today in Monterey Bay for inspiration. Wish you could all have swum with me today. Sending so many COLD WATER vibes to you all.
Lisa Sorin I am taking my 4th tomorrow. Somewhat better. The swelling on my face, not so much
Amanda Lally Glad the hives are better but what?! I have a weird feeling that the Xolair makes the facial swelling worse. What is your history?
Lisa Sorin I started hives last August. I’ve been to dermatologist, Endroconologost, and allergist.
I’ve been put on steroids, Benadryl, three or four allergy meds…..
My thyroid is slightly hyper so I was put on low dosages of meds, I upped my Zantac, and take two allergy pills Xyzal. I’m trying to figure out where all this came from. I’ve had three shots going for the 4th. I’m better with the hives but the swelling in the face is constant. I hate it.
Katrina Keyser No hypothesis, but stunning picture! One of our favorite places.
Amanda Lally My husband took it. He was so nice he drove me to the coast three times this weekend and was my lifeguard. Not exactly swim season but I love the COLD ocean
Katrina Keyser And the beautiful view. Nothing better.
Marlene Chapman Is that right by lovers point? I miss home
Linda Cooper Daubert I had 300 mg every 4 weeks it took 6 months and I was hive free. The hives got worse after the 2nd shot but then gradually got better until gone. No side effects at all. I only got the face swelling once in a while, so I can’t say about that.
Crystal Alexander Xolair works for me amazingly. I get 2 shots every month. It started working for me after A few days. I have been on over a year. Tried to get off to see if I had reached remission but no luck. Got back on yesterday and today am all clear again!
Sharette Gallo Santos Xolair worked for me at first shot, however I do get a rash on my face sometimes after the shot that is treated with hydrocortisone cream and clears in a few days
Amanda Lally Wow lucky Sharette!
Savannah Koonce 12 years with CIU and been on xolair 300mg since April 2017 it worked immediately for me
Amanda Lally Ok all I am curious of those of you who have had a LOT of quick and ongoing success with Xolair would you describe your symptoms as VERY itchy hives or just painful swollen wheals without much itch? My allergist just made a strange comment that she isnt sure the xolair will solve the itch. Have you all seen dermatologists also? The challenge is we are all so unique everyone of us were born that way I suppose that is a wonderful and a frustrating thing all at the same time.
Cindy Smith-Grant My hives are very itchy. Xolair took care of the itch after 1 full dose. I was getting half doses previously.
Amanda LallyYes agreed and honestly I got rid of mine last round in almost same time (6 mos) without xolair but took forever to get off prednisome. Still If I cant get off steroids and antihistimines now bc xolair hasnt worked yet…then I am wondering…is it needed. What is a DLQ Score?
Teri Lee Barker wow I am learning a lot about the UK medical system. I have few compliments for ours in the US. If I had to fix that I would get hives for sure. Wow self administering xolair. My allergist is all about having a crash cart and so on. She is very concerned and high strung. I wonder how she doesnt have hives or?…I havent found the right long term provider but working on it. In the UK do you get referrals from your main doctor? Glad it is working for you!