Xolair. Here's Hoping

Hi there. I'm a 70 year old male. Not at all overweight and a healthy eater. I have had annoying Asthma all my life.

I use Ventolin, Relvar Ellipta and Montelukast. I am also on Prednisolone for GCA/PMR and I have reduced to 7mg a day from 80mg initially.

I have had an exacerbation recently and the hospital consultant upped my Prednisone dose to 20mg a day which helped the Asthma but has left me with bruises and struggling to get back to 7mg :/

The consultant mentioned Xolair to me and I got really excited as I read so many good things! So I had all the necessary blood tests and am waiting/hoping for a call to OK Xolair.

Any hints/tips/hope welcome

Thx

David

[runcyclexcski]

I was never overweight until I got asthma. I managed to stay in shape while exercising in a respirator for 15 years, and did mountaineering, running and nordic ski races in a respirator. 1+ years ago the asthma got so bad that even the respirator did not help (the cold air was sufficient to trigger attacks). I haven't exercised for 1 years+ now. It took me the year to get on Xolair (paperwork, GP ignoring my requests, incompetent consultants etc). In the mean time, as I was getting more and more overweight (steroids and no exercise), I started getting "friendly" automated messages from my surgery warning about my BMI and asking if I want a "consultation" to explain to me how to "live a healthy lifestyle". The automated algorithm never connected the dots that the reason I cannot live the healthy lifestyle is that the system won't let me get on Xolair in the first place, and blamed my "high BMI" on me being lazy (I guess). I know it's not personal, but it just drives me mad.

[Madbiker1 in reply to runcyclexcski]

I am waiting for xolair - Benra and Nucala didn't work for me - still on pred after six years. The staff that treat me at hospital are wonderful but it took me two years to get a diagnosis of eosiniphilic asthma - heart failure and me not taking my meds properly (!) were blamed at the beginning. Unfortunately I have developed other symptoms that may possibly be vasculitis - I am waiting for results of bloods. I still manage the gym but sadly my running and kickboxing days are over.

[runcyclexcski in reply to Madbiker1]

Hopefully, Xolair might get you back into running, or, perhaps, cycling or swimming (the latter two should be more gentle on the body than kickboxing).

[Evesham]

Having had to live on steroids in recent years my three times weekly gym days are over. Something I just have to accept now. I am on Xolair and although I still have asthmatic coughing and wheezing the injection keeps me off steroids. I am delighted. Xolair is not a miracle cure but I wouldn’t be without it. Hope you get it good luck

[Tree20862]

I have been on Xolair for more than 5 years. It took almost a year for me to have full benefits. I have had had less exacerbations and used less prednisone to relieve those exacerbations. I am still on steroid inhalers and montelukast, zyflo, allergy meds but no daily oral steroids.

Good luck!

[Tree20862]

I have been on Xolair for 67 months this week.

[Hidden]

And I had the consultant meeting and got Theophylline prescribed. After two nights of pounding heart, dizziness and more I have stopped taking the pills. I have bloods on Monday but just can't do Theophylline again. Scary.

[Poobah in reply to Hidden]

Hopefully your consultant will now move forward and approve Xolair for you.