Autoimmune urticaria anyone?

[jbaum27]

Looking to make friends with others who have autoimmune urticaria and share stories, symptoms, food for thought, etc. Anyone game?

[Roostx]

I got my first shot of Xolair five days ago, but I woke up this morning with hives.   Did it take anyone longer than a few days to get relief?   Most of what I have read has indicated relief in 3 to 4 days.  Lenrosen is the only person who indicates two weeks.   Please let me know....thanks!

[lenrosen]

My wife has had 5 Xolair shots to date. Cost has been $735 per injection. The pattern of response has varied from shot to shot. In some cases the hives rapidly disappear within a few days. In other cases she has had a delayed reaction in which she is uncomfortable for as much as a week or two and then the immune suppression starts to kick in. After every shot she has experienced fatigue for as much as a week or more. But she does get about 3 months of minimal hive activity before the little buggers start coming back with a vengeance. I think if we were to decrease the time between shots her overall relief from the hives would improve. But at the price these shots cost we are trying to compromise. She has had know indication of any allergic response which is great but we have an epipen just in case. So hang in there and keep a diary of your progress along with symptoms associated with the shots. You will then get a sense of how your own body compensates. Hopefully at some point both you and my wife will go into remission.

[Roostx]

After four weeks of waiting, I am excited to report that I am scheduled for my first Xolair injection next Thursday.  I really really really hope that this will work for me.   I thought that it would break my bank, but my insurance is actually covering the majority of the cost and then there is a program that everyone qualifies for (at least in the US) that covers 80% of the co-pay cost up to $4000 a year.  

[itchyaussie123]

I have not noticed any adverse effects from Xolair injections.  Apparently some people can have an anaphylactic reaction so I stay at the doctor's for a little while after the injection but so far no problem.

[Kiraluna]

Hi,  for the last five months I have suffered from; hives, red angry skin "stain", extreme dry skin, acute itching and burning, first time for me. However, for a long time I have suffered from "stomach attacks". When they come which can be every month or once a year, they feels like something from the scene of "Alien" (when the creature bursts out), the pain is extreme! I have seen several doctors, but so far nothing has truly helped. I am taking something like prednisone and Tavegil  (I live in Europe and some meds have different names) supposedly to keep the symptoms "under control". Nevertheless, regardless of the meds, the symptoms come and go as they please and I have ended in the E.R. and different wards five times. A couple of weeks ago they gave me singular, this was horrible, it triggered my "stomach attacks" a rash and made me catatonic for three days.  Now they want to give me Xolaris. It seems that I am allergic to meds, so I am very careful when they want to give me new ones.  I have heard that Xolaris in the long run, does not work and it can make you quite sick. Would love to hear more about your wife´s experience, thank you!

[Roostx]

I plan to start shots in 2 weeks.  Have you had any side effects?   They added singulair to my other treatments and I am fatigued.  I am hoping that Xolair doesn't induce fatigue.