Just need to vent. It was one year in August that I’ve been suffering. The past few days have been relentless. I really didn’t want to take Xolair, but my options are running out. (Tons of drug cocktails, Natural Functioning doctor, Diet Changes..etc. Nothing is working) Please tell me your results good and bad with Xoliar. Thanks. I hate this condition so much. It’s literally torture.
Jenna Hyde I had my 7th xolair Friday. Unfortunately about the 5th shot it started to not be as affective as it was before so I’m covered head to toes. Cocktail drugs aren’t working either and Dr wants to do xolair twice a month and I’m to start taking cyclosporine but those first few months were awesome
Marybeth Kayne Thanks for sharing your experience. That’s the other crazy thing about this disease. Every person’s results are so different. Hugs. I hope you have more success with it.
Jenna Hyde So true!! Good luck with it.. Those first few months were great I wouldn’t change it for anything .. be happier if it had continue to work but oh well
Marybeth Kayne Jenna Hyde Hoping for continued success.
Kammy Eisenberg Xolair has a program for financial aid. All I paid was $5 for the meds and $30 my usual copay. ( FYI. I took it for 4 months it didn’t work for me. I seem to be having a better result on cyclosporine and because I’m allergic to dye i got my meds changes to one w/o color added. Good luck.
Marybeth Kayne Hoping the cyclosporine continues to work for you. Thanks.
Rebekah Dunker-Dilks Xolair didn’t work for me, but then I found cyclosporine, I’m down to one allerga a day .and getting close to stopping it as well. I hope you find what works for you. This condition is beyond miserable!
Marybeth Kayne Thank you for your opinion. I need to research this cyclosporine.
Rebekah Dunker-Dilks Xolair is technically considered safer, but it’s always great to know what the next step is in case Xolair doesn’t work. I was suffering with CIU for seven years, nobody should have to deal with it that long. There is plenty of pharmaceutical choices and you just have to find the one that works for you, especially when everything else fails.
Marybeth Kayne Rebekah Dunker-Dilks thank you. I hope you are feeling better.
Rebekah Dunker-Dilks I am!! Down to one allegra and minimal hives. Like maybe one hive on my body for the day. No more angiodema I am optimistic for once
Tea Angier For me xolair is helping it be intolerably severe. I have xolair shots every 2 weeks, because 4 wasn’t work. For example, today was my shot day. But the past week my hives have been increasingly getting worse. Hot, itchy, stinging, welts, all over my body, i wake up with puffy eyes. BUT i have not had a puffy lips, swollen hands and feet, face, in a while.. Except swollen lips maybe a few weeks ago.
Its worth a try at the very least.
I’m starting to loose hope.
My allergist/immunologist said the next step is trying drugs like cellcept, which i dont want to take, as they are not good for you.
Marybeth Kayne I’m sorry to hear what’s going on with you. I too am at my wit’s end. Not sure who to believe anymore when it comes to my doctor’s. That’s why this group is so good. Everyone here completely understands. I hope you find some relief soon.
Tea Angier Thank you, i hope you find something that works too!
Marybeth Kayne Tea Angier What’s crazy is there is no rhyme or reason to how I get them. If I eat, I get them, if I don’t eat, I get them, if I take meds I get them it’s nutso.
Crystal Alexander Xolair was a game changer for me. It got rid of my hives 100% after about 2 days after my first shot. I have been on xolair and hive free for one year this month. My dr plans to try to stop it in December to see if I flare back up or if I am in remission. The only side effects that I notice on xolair are that I’m a little sleepy the first few days after the shot and I seem to maybe get headaches more frequently but only mild. My first couple of shots left my joints a little achey but I don’t get that anymore. Wayyy more tolerable than the hives and swelling 24/7.
Crystal Alexander I will also add that I was able to drop other meds (doxepin and Zyrtec) and only take xolair once a month. One shot in each arm)
Marybeth Kayne Crystal Alexander Wonderful news. Thank you for sharing your experience.
Crystal Alexander Marybeth Josie Kayne no problem! I know everyone can experience different side effects. I was worried too at first. Feel free to message me any time about it!
Elizabeth Ward I just began xolair last month and I too tried everything else possible to avoid it but I had hit rock bottom, I had no quality of life. Am I one of the lucky ones to see immediate results, no, BUT I do notice a difference, my hives are much smaller each week and I was able to work out for the first time yesterday and yes I broke out but again wasn’t too bad. I was even able to help my husband do work outside that would not have happened a couple months ago.
Connie Watts I love Xolair. Been on it for over a year now, hive free since week one. One flare up about 8 months ago but went away quickly again. Minimal itching, off of all meds besides Ranitidine and low-dose Doxepin.
Marybeth Kayne Wonderful news Connie. Thanks!
Connie Watts Marybeth Josie Kayne Go for it. It’s a game changer.
Marybeth Kayne Connie looks like I’m heading that way. I appreciate your experience and you sharing it. Thanks. I wish you continued success with it. Yeah!!
Mena Bella Had my first xolair shot this week, already feel some relief