My allergist/immunologist at Mass General (Waltham) has a cancellation tomorrow, so I’m getting my first Xolair injection at 1pm, much sooner than I anticipated. Any advice for a first timer? No horror stories please, I’m already nervous.
Oh and here’s my story in a nutshell – 43 year old mom/teacher in MA with mild hypothyroidism but otherwise pretty healthy until 2 years ago. Beginning in Jan 2016, following a round of Cipro for a UTI – chronic urticaria and angioedema (with a few brief remissions) I’ve been gluten and dairy free for 18 months and eat only organic whole foods. I’ve tried a low histamine diet, Keto, gut healing, acupuncture, homeopathy, CBD oil, LDN as well as pretty much every traditional antihistamine combo. I’ve also been on prednisone twice, both times making my symptoms worse.
I’ve been reluctant to do Xolair, but this last flare, starting right before Thanksgiving, broke me.
Any advice/words of encouragement/good vibes appreciated! I love this group. I wish I had discovered it sooner!
Kim Knauf Xolair changed my life! Not really any side effects except I get tired the day of the injection. I have had very minimal breakthrough hives since I started 2 years ago! Good luck!
Bill Halkias I had my 3rd shot Rebecca about 10 days ago…. no side effects what so ever!!! Hasn’t worked for me yet do… but people in this group are saying that it could take up to six months to work!! 🙏lol I hope it works for everyone!! Good luck 🍀 don’t stress!!!
Sharon Spahn Lalkas I’m going for my fifth shit on a week. Nothing yet, same as you, I haven’t given up hope! Hoping you’re hive free soon!
Debbie Korthuis When you were trying to heal your gut did you follow a special diet like GAPS??
Rebecca Fic Odell I worked with my functional medicine RN. I followed the mitochondrial diet. But it’s similar. Also took cod liver oil, L glutamine and COQ10.
Debbie Korthuis Interesting thanks. Since yours started after antibiotics it seems very likely it would be leaky gut so I was curious
Mary Kate McCabe May I was nervous too before my first shot. I had my 4th shot last week and I don’t have any hives, they decreased each month. I am very pleased that I haven’t had any bad side effects other than a few headaches and some flushing. My allergist just told me that the FDA has approved the use of Xolair for children…I started today to try to taper off one of my 4 meds/antihistimines. I am very grateful that I tried it, it has made all the difference.Sending good vibes your way.
Jennifer Schluer Ender My daughter’s journey started 4 years ago after a UTI as well. She had an reaction to Sulfa. She was only 10. It’s been awful. Just had Xolair since June, it’s been a miracle drug for her. Her advice… drink lots and LOTS, and LOTS of water. Best of luck.
Connie Watts Just relax! You’ll be fine. I’ve never had a problem, it’s been almost 2 years already.
Lindsay Oosten Take a book and your epi-pen. Besides that, it’s a waiting game. Good luck!
Janet Chacurian Padgett It will be 4 years in May for me, and it’s been a lifesaver. Most months, I’ve had no symptoms, and a few times I’ve been really tired and achy for a few days afterward, but that’s it! So grateful. Enjoy!
Maria Lewis 2nd shot yesterday – brilliant. Yes a few very minor aches in joints – nothing compared to the ‘itching’. Noticed a big difference day after first shot. Good luck x
Sue Bellamy I was a bit nervous, more by the precautions taken and having to stay on the ward for 2hrs afterwards. I was waiting for something to happen – nothing did, I was fine, no side effects at all. Hope it is the same for you and that it works!
Rebecca Fic Odell I have heard the same from several others!