This is my story about Xolair. I have been on it for about 6 years.
In 2003 I was seen at National Jewish in Denver. At the time it was suggested that perhaps it might help with my Aspergillus even though that is an off label use. My pulmonologist was willing to try it.
I was diagnosed with Aspergillus Niger in 2002. My particular problem was constant severe plugging of my lungs which resulted in very frequent bronchoscopes,sometimes as frequent as monthly and occasionally twice a month.Nothing was effective in getting rid of the plugs except for the “bronchs”.
I was on Sporanox, prednisone, hypertonic saline nebulizing. Tried the Vest and daily PD as an outpatient
We started the Xolair in April of 05. I receive two injections,150 mg. in each arm, monthly
I must admit that I didn’t think it was doing anything but I stayed with it. Never had any side effects. I continued to have to have “bronchs” ,however not as frequently as before. Really didn’t think of that in association with the Xolair.
My last bronch was in Jan 09. It was like a miracle to have been able to go so long without one. Both my MD and myself attribute it to the Xolair. I would say that it took a while for it to “kick in”.maybe 3 years.
In addition, I have always been allergic to grasses, molds and trees.Have always received allergy shots for the grasses and trees. The allergy seasons have been bad. Last August my allergist retested me and I had no,absolutely not one, reaction to any of the tests. Can I also attribute that to the Xolair? I don’t know.
I have been fortunate that Xolair seems to have have significantly changed the course of my disease.
I hope it continues.I still am on a steroid inhaler but we have stopped the Sporanox as a trial.We shall see.
Joan Becker
Share this post
Latest News posts
Loneliness and Aspergillosis
November 30, 2022
Doing a disability assessment
November 21, 2022
Finding an advocate
November 21, 2022
Managing breathlessness
November 18, 2022
Sex and breathlessness
November 18, 2022
Managing Chronic Pain
November 18, 2022
Recognising and avoiding depression
November 18, 2022
Plugs and Slugs
November 10, 2022
Living with CPA and ABPA
October 31, 2022
Rare disease patient journey to diagnosis
October 24, 2022
News archive
- Antifungals in development
- COVID-19
- Events
- Fundraising
- General interest
- How do I...?
- Information and Learning
- Latest research news
- Lifestyle and Coping Skills
- Living with Aspergillosis
- NAC announcements
- News archive
- Patient and Carer Blog
- Patient stories
- Recordings
- Supplements and complementary therapies
- Types of aspergillosis
- Video