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=1339558275 Message started by goldielove on 06/12/12 at 16:31:15

Title: xolair
Post by goldielove on 06/12/12 at 16:31:15

has anyone tried too take this drug has it helped? I was told there was a research done in Germany that it has really helped mast cell patients, I know its expensive but wondering if anyone has tried it and if they have had any positive results or neg results

Title: Re: xolair
Post by femaillady on 07/28/12 at 12:21:21

Interesting xolair study going on for IA patients in the US. My sister takes the xolair shots for her uncontrolled asthma, and has discovered, months into it, she has the wonderful side effect of her gastrointestinal issues have pretty much gone away. http://clinicaltrials.gov/ct2/show/study/NCT00890162

Title: Re: xolair
Post by Anaphylaxing on 07/28/12 at 12:45:57

I've heard of some people with high IgE levels being started on it recently, but I haven't heard how they're doing yet. I will be interested to hear.

Title: Re: xolair
Post by goldielove on 07/30/12 at 16:22:19

My ige levels are normal so I doubt my insurance would ever approve of this and I don't know if it helps if your ige levels are normal

Title: Re: xolair
Post by CrystalG on 08/08/12 at 13:13:54

I am on Xolair injections now for my Autoimmune Mast Cell Disease. I havent noticed if they are helping or not as its only been a couple of weeks, but the muscle aches and joint pain I feel have gotten worse. I will let you know if it works for me. My insurance approved it right away with no questions, all insurances I guess are different on how much they cover or if they cover it at all.

Title: Re: xolair
Post by Julie T on 08/15/12 at 17:12:52

this will probably be the next drug Dr. Castells recommends for my daughter. We started with adding ketotifen last week. She said with my daughter's high IgE is will Xolair would help. So I am interested in learning how others are doing on it.

Title: Re: xolair
Post by mommy2seanp on 08/19/12 at 17:29:19

Dr. C has suggested this for my son as well but he has a low total IgE.

Interested in others experiences.

Julie- are you noticing any difference in your daughter with the Ketotifen? I had a reaction so am hesitant to try it with my son.

Title: Re: xolair
Post by Julie T on 08/26/12 at 03:05:48

Ketotifen is helping her. I think it is a small change and in time maybe better results. I have noticed some bloating which is what happened when she first started gastrocrom. I think we are slowly figuring out what she needs. Yesterday she had a bad day - so then you wonder again...i think food is a big trigger and she in only eating a few things. Her IgE is very high so I wonder how Xolair would work...

Title: Re: xolair
Post by CrystalG on 09/28/12 at 00:56:35

I wanted to give everyone an update on Xolair injections. I have been getting them now (300mg) for a few months once a month and can tell when they are starting to wear off, as the anaphylaxis comes back full force. My doc has now said I will get them every 3 weeks instead of every 4 as its around the 3rd week when things come back. I still get hives and flushing every day, but the Major Attacks I feel are more controlled. Just wanted you all to know that I think its worth it if your insurance will cover t.

Title: Re: xolair
Post by starfish on 10/30/12 at 07:05:43

Crystal I have had one injection and I am in agreement with you! It was really helped! Not so much with flushing/itching, but with the "big events". I'm thrilled!

Title: Re: xolair
Post by goldielove on 10/30/12 at 11:26:43

I never started xolair as my levels were not high enough I have zero allergies per Dr. C so I guess I should be thrilled with that

Title: Re: xolair
Post by starfish on 10/30/12 at 14:01:33

My IgE level isn't high...from what I understand that is not a surprise for masto people.

Title: Re: xolair
Post by Joan on 10/30/12 at 16:32:37

I didn't know that Xolair was helpful for people with low IgE. Is there another marker that indicates it could be helpful? How is it justified for insurance?

Title: Re: xolair
Post by starfish on 10/31/12 at 03:20:50

It took 7 mos and insurance carrier change to get it...it's a game changer for me :)