Treatment breaks from Xolair
I have been suffering with chronic spontaneous urticaria and angioedema for 10 years. I've been on xolair injections for 8 years but every 6 months my immunologist makes me go on a treatment break to see if they go as quickly as they started, however, every 6 months they get worse. I now have them internally and causes labour type contraction pains, vomiting and indigestion. My question is, is anyone else made to go on a treatment break?
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Treating chronic hives can be quite complicated.
Unfortunately, I am not a medical professional and cannot speak for your doctor's course of action. I will say however, for those who take medications long-term it can be helpful to take a break from certain medications. For some people, it gives the body a chance to "recover" from what has been suppressed by the medication. It may also be a time for doctors to reevaluate symptoms and response to treatment.
As we wait for others to chime in with their own experiences, I would recommend bringing your concerns and updated symptoms to your immunologist's (or healthcare provider's) attention.
All my best, Doreen (Team Member)
Thank your for your reply. I do appreciate its not only frustrating for us that suffer with the condition but for the consultants/drs as well not knowing what causes it. I also appreciate how expensive xolair is as a treatment. I have emailed my immunologist but haven't yet received a reply. I wasn't sure if this is because everyone has to go on a 6 month treatment break and there is nothing more she can do? I will send another email and pray for a response.,
I just wanted to check in and see how things are going?
Have you received a response from your immunologist?
Thinking of you, Doreen (Team Member)
How expensive is Xoliar and do you get coverage? I am pretty close to being out of options and the doctors and allergist say Xolair.
thank you for checking in. I hope you are keeping well?
I did receive a response, but only to say I'm unable to have a treatment break every 12 months and that it isn't common to have stomach issues with my condition. So I've asked them to review me again in 6 months on my next treatment break. Fingers crossed that they can help.,
Thanks so much for the update.
Although you received an answer, it's frustrating that your concerns weren't completely addressed.
I'm including a few links with some information and personal experiences with Xolair: https://chronic-hives.com/living/hives-medical-history and https://chronic-hives.com/treatment-progression
Wishing you all the best, Doreen (Team Member)
Does the Xoliar work for you?
Yes, within a month of me having my injections I am symptom free. Its the treatment breaks that I struggle with.
My immunologist has said it is funding that prevents patients from having them without a break, which I can appreciate but financially I can't afford to take time off work. I have to use annual leave when my symptoms are bad.
