Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Xolair?! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1413310030 Message started by PamH on 10/14/14 at 07:07:10

Title: Xolair?!
Post by PamH on 10/14/14 at 07:07:10

I'm curious how many of you have been on or tried Xolair?
My specialist really wants me to try Xolair because I am so reactive. I recently had to Epi and go to the ER. We think it is related to my hormones. Those are next to impossible to control!! We have plan in place, but she really wants me to consider Xolair.
So what are your experiences? Do the side effects scare the pudding out of you?? (they do me!) :o
I might add that I am currently on Cromolyn, Ketofifen, Singulair and H1 and H2.

Title: Re: Xolair?!
Post by CrystalG on 10/23/14 at 14:28:14

Pam,

I have MCAS and have been on Xolair for a year and a half. I get two injections (300mg) every two weeks. In the beginning I was sometimes in the ER twice a week with Anaphylaxis, now I am in the ER every 6-8 weeks with Anaphylaxis and have been on this cycle for over a year. I have to say I do not know if the Xolair is helping me much or not, but my doctor thinks that if I stop it I might go back to being in the ER twice a week with Anaphylaxis. So far I have not really noticed any bad side effects. I am also on cromolyn, singulair, H1's and H2's and prednisone, so it might be that I just experience so many side effects from these meds already, that I don't notice any from the Xolair. I believe it is worth a shot if you can get your insurance to cover it.

Title: Re: Xolair?!
Post by mountain girl on 10/27/14 at 13:55:32

I have had 6 Monthly doses of Xolair. The only side effect has been a minor headache for a few hours post injection. A 5 year safety study was released in September that has resulted in new warnings being added to the xolair info sheet. They found an increased risk of cardiovascular problems such as blood clots and pulmonary hypotension in patients who take xolair.

I do not have a formal diagnosis but MCAS is highly suspected. I am not sure if Xolair is helping me. Because of this I have decided to go off Xolair and see if I decline again. It doesn't make sense to stay on this very expensive and potentially dangerous drug if it isn't helping.

Title: Re: Xolair?!
Post by PamH on 11/05/14 at 14:18:39

Mountain girl I totally agree with you. I think the benefit would really have to out weigh the risk.

Crystal G...I am so sorry this is happening to you. Do you know if you could be reacting to salicylates?? They are sneaky little devils that used to send me to the ER quite often. Once i figured it out I am down to a few times a year. Also have you tried Singulair in your mix of meds...it seemed to help me more than I thought it would.