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

Posted by karenpacochca @karenpacochca, Jul 1 9:25am

Long term use of Xolair for moderate to severe asthma. Has anyone been able to stop Xolair and not get the "asthmatic episodes"?

I am asking because Xolair is very expensive, if not covered by insurance. There maybe a time when I need to switch insurance coverage and am worried that it won't be covered. Shots can cost up to $2K - and this would be a monthly recurring cost.... So I would be spending anywhere up to $24K out of pocket per year.

I live in a city that triggers my allergy induced asthma.... I grew up on the east coast and only had allergies - very mild and every winter bronchitis... But in Austin, TX, it is all year round with much more severe reactions....

Has anyone moved to a different location and their asthmatic reactions were reduced?

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jwool89 | @jwool89 | Jul 4 1:27am

My daughter is on Xolair and I am on Fasenra. Have you tried their copay assistance program? We both pay next to nothing. We couldn’t be on them otherwise. We have a genetic lung disease and these biologics are saving our lungs. I am a huge fan.

karenpacochca | @karenpacochca | Jul 4 12:29pm

Hi! Insurance will pay for specific biologic asthmatic drugs per the IGE blood test. Mine - based on my insurance plan, will only cover Xolair per IGE results. I am covered now -- but if I lose my insurance and or move companies and or retire in the near future...... it will be a problem.

FYI,, I am also using the Xolair co-pay assist program, which makes my insurance payment $5. The co-pay assist program only assists if your insurance company covers Xolair and there is some out of pocket after insurance.

I agree -- the Xolair has changed my life! This is why I am fearful of losing insurance...... I wish I didn't have to take Xolair AND allergy shots in order to feel "normal".

pht1123 | @pht1123 | Jul 11 9:29am

Hi,
I was on Xolair for about 15+ years - it worked great. I started when it first came out and there were no other biologics. However, after such a long time, it stopped working. I was switched to Tespire - to which I got much worse with numerous side effects. Unfortunately, after being hospitalized with asthma, we searched for another biologic which I am doing well with - I am currently on Dupixent every other week. Thankfully, there is not cost and insurance is covering it. I have improved from Tespire. I am a steroid dependent asthmatic, so this is helping, along with other meds for asthma. Good luck. Pam

Lisa Lucier, Moderator | @lisalucier | Nov 19 11:21am

Hi, @karenpacochca @jwool89 @pht1123. I wanted to be on omalizumab for years, as my aunt in California had such great luck with those shots. However, my IGE never qualified.

karenpacochca - I have noticed variance when traveling with my allergy-induced asthma. Usually it is worse in another state. I think that could be the environment or that my local allergist has me set up with treatment for what I tested as allergic to in my area. How is your allergy-induced asthma? Are you still thinking you may be giving up the omalizumab at some point?

jwool89 - how is your daughter doing on the omalizumab?

pht1123 - How is the dupilumab treatment going?

jwool89 | @jwool89 | Nov 19 12:38pm

In reply to @lisalucier "Hi, @karenpacochca @jwool89 @pht1123. I wanted to be on omalizumab for years, as my aunt in..." + (show)

My daughter has been on omalizumab for years and it has worked extremely well for her. She is now in her first year of college 1600 miles away, and I have the med shipped to her there. She is giving herself the shots for the first time and it is going well.

karenpacochca | @karenpacochca | Nov 20 8:11pm

In reply to @lisalucier "Hi, @karenpacochca @jwool89 @pht1123. I wanted to be on omalizumab for years, as my aunt in..." + (show)

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.

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