Xolair & steroid taper

Good evening all ....

not been on for a while been relatively stable, off to the Brompton tommorow for my monthly jab and after a discussion with the nurse specialist they plan another reduction/taper of my prednisone...... for those that remember my last attempt failed and I got to poorly and had to go back up to my current maintenance dose of 25mg daily which I've been on for some 2years !! They plan a reduction of 2.5mg daily for a month and will re assess at my April jab up !!

Wish me luck and have a breath easy week all, much love

Mark

11 Replies

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  • Good luck Mark hope it all goes well, travel safely. Apart from the long term effects of your treatment, why are they wanting to cut your dose? See my post a few min's ago. Cheers Sue

  • Hi..... It's as simple as that sue,prednisone isn't considered a long term use medication, I've been on 25mg (5 tablets) daily for 2yrs straight ....

  • Good luck mate, I managed to reduce down to 10mg (my lowest in 6 years) after about 6 months on Xolair before I blobbed in January and now having to start again, got back down to 40mg and injections due in 2 weeks so fingers crossed for us both!

  • Hi .... Great news you managed to get to 10mg . I only managed a reduction of 5mg down to 20mg ! But I simply got to poorly my spirometry results were drastically low after 4 weeks, so my consultant decided to go back up to my base line of 25mg ........ I'm on the roid roller coaster so to speak !!!

  • Best wishes and good luck I hope everything goes ok for you.

  • I'm on Xolair as well, was weaned off pred but getting down from the 15mg to 0 was very slow - 1mg a month in the end but I got there - I'm sure that they will check your adrenal gland function at 7mg then 5mg as there is a risk of adrenal suppression if you have been on pred long term / high doses. Xolair changed my life, usually have one flare up a year now which requires nebs plus drip in hosp but no longer need time in resuss then admission for a week or so which was the normal pattern for me in 2014 from Jan to June.

    My adrenals have failed so I have to take hydrocortisone 3 times a day and carry an emergency injection kit. I now receive thyroid and testosterone replacements due to the effects of pred.

    good luck

    Mike

  • I have xolair too, I still struggled with my Prednisolone reduction, I was still using up to 4 ventolin inhalers a month until a couple of months ago when they added spiriva to my medication it's fantastic has made such a difference I hardly use any blues now and I'm down to 5 mg of preds' I now have fostair 200/6 and spiriva, montelucas at night. Might be worth a try for you my peak flow is regularly 400+ which was unheard of.

  • Hi ... I've been on spiriva for 4 years now and to be honest it doesn't make a lot of difference to me .. We are all different and respond differently to drugs. Good to hear that it has helped you and long may it continue

  • Thanks .. have you tried fostair?

  • Yes .. I was on clenil modulate for approx 20yrs ... Then changed to symbicort 200 4 years ago, I'm currently trying flutiform 250/10 which I've been on 6 months .... Montelucast didn't work for me either, I also tried for 6 months ...... I take max dose theophylline twice daily !!

    I'm now described as refractory by my consultant ( as far as I'm aware it's a term used to describe a patient that is unresponsive to maximal dose medication )

    Just my luck !!!! Ha

  • It took me months to get from 2.5 down to 1 then down to 0.5mg. You will get there but it takes time.

    I stupidly stopped xolair in January after 3 years and now regret it but have been told it's harder to get onto now having to be tried on bronchodilators such as theophylline and spiriva respimat in the North East all of them first. You then have to go to Newcastle hospital which is miles away.

    I'm having rebound of allergies, urticaria, lots Prednisolone and really regret stopping xolair. I was on 600mg 4 injections every 2 weeks.

    Life is crap when you make bad decisions but you will get off Prednisolone if it's done really slowly. I wish I could be on it forever but before xolair was on it permanently for 2 years and it lost its effectiveness really after that time.

    Have you had synacthan test of your adrenal glands which I did to see if I was producing my own cortisol still which I was thankfully.??

    Good luck

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