Xolair (omalizumab) long term use: What if you have to stop?

Thank you for your reply. I used Dupixent, which worked wonders for my asthma and chronic sinusitis, unfortunately the side effects were too severe to stay on it. I’m now trying Tezspire.

@staylorrn2000

I couldn't find where to respond, but glad I did. I was on Tezpire for several weeks - from summer 2023. It worked for about 6 weeks and then gradually stopped working. I needed to increase my prednisone, as I was told to stop it. My asthma went out of control and I needed hospitalization in Jan 2024, high dose steroids and started on Dupixent - which has helped me tremendously helped. Tezpire has a different mechanism of working than Dupixent. Nor right for me, but hope it helps you if you use it. Good luck.

@songinmyheart54 Unfortunately I signed something where I can’t divulge the trial I am doing or the drug name. I have Alpha-1 Antitrypsin Deficiency so it is an infusion that I will do for three years to stop the progression of my lung disease. We don’t have a cure but this looks promising & I am doing well on it. It is literally saving my life.

@jwool89
I am so happy to hear your new meds are working. What is the name of the new med? Is it by infusion, shot, pills?
I am on my 4th cancer since 2013-14. Melanoma has scared me the most.
God Bless you

@songinmyheart54 I had the exact same experience with Fasenra. A couple of years ago I had a lapse in coverage so missed taking it for a couple of months & I could really tell. Now I am off because I am doing a clinical trial that doesn’t allow it but eosinophils have barely increased & the new med is helping. So sorry you are battling melanoma. Good thoughts to you & hope you overcome this quickly.

@jwool89 fasenra was the best thing I could have done. I was on xolair for a year twice a month. My doctor switched me to fasenra once every 8 weeks. My insurance pays $17,000 per dose but it was life changing. Three years of NO asthma problems. Then I got Melanoma skin cancer in my lungs. I had to go on immunotherapy Keytruda and I couldn't take fasenra any longer because keytruda doesn't work with it.

@pht1123 , may I ask what side effects you experienced while on Tezspire?

@karenpacochca- so sorry to hear your insurance is unexpectedly no longer covering omalizumab (Xolair). I have had good luck with mepolizumab (Nucala) for my asthma.

Is your insurance still covering other biologics? Have you decided to where you will be moving?

Hi fellow asthma sufferers!
My worst fear has come to fruition. My insurance for the 2025 plan no longer covers xolair. This is an abrupt and unexpected full stop to my shots. I will discuss with my immunologist but would like to know if anyone has tried alternatives? I was thinking a combo of nutrition, exercise, yoga and or other measures to control my allergy induced asthma. My husband and I have also decided to move to another location somewhere on the coast that has a lot fewer allergens that impact me.

Any recommendations is appreciated!

Hi Lisa
Yes absolutely because my asthma is triggered by allergy. My asthma in nyc, Boston and Los Angeles, Orange County is well controlled without Xolair. I lived in those locations prior to moving to Austin, tx. Geography, atmosphere and type of pollen matters. For example, I do better by the coasts with exception of Florida which is too humid and makes it difficult to breathe. My allergies in Austin causes a lot of pressure in my head, ears, nasal etc. I get extremely tired and extreme dry eye, rosacea flare ups, itchy skin etc. … and this is with Xolair plus allergy shots.
We will be leaving Austin next year:-). If I move to west or east coast, then I will want to wean off of Xolair to see what happens.