Xolair. Here's Hoping: Hi there. I'm a... - Asthma Community ...

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Xolair. Here's Hoping

davidcantswim profile image
8 Replies

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

8 Replies
runcyclexcski profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
Tree20862

I have been on Xolair for 67 months this week.

davidcantswim profile image
davidcantswim

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 profile image
Poobah in reply to davidcantswim

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

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