I have been on mepo now for 12 months - my pred has reduced significantly, from 50mg a day to 10mg.
However it does not seem to have the effect of a high dose of pred - if I need to exercise I need some pred as well. I am not sure I will ever completely come off the steroids.
My asthma condition has significantly improved and I haven’t taken any prednisone for the past 12 months. I have been on mepo for 18 months. Give it time. Hope that helps
I have also been on Mepo 18 mths, It has helped me tremendously, since being on it I had 1 asthma attack after 2 weeks, but it settled down after nebs, I have not had any steroids at all. Also I have not had a day off work since I have been on it. Prior to Mepo I was on Xolair for 4 years and 2 years in, after a bout of pneumonia I was going downhill, I was hospitalised 4-5 times per year and no sooner I was off preds I was back on them again.
That’s a mind blowing reduction in steroid use, the side effects are horrid- fantastic! I’m not on them continuously but still need booster courses (every 5-8weeks). As a rule, Since starting Mepo 18 months ago I go slightly longer in between steroids, get better on a lower dose and take them for less time.
I try to get as much exercise in my “well” periods as possible to keep lung muscles and other muscles strong and to try and keep the pounds off, for those periods of time when I’m on the steroids and eat for England! My days of hard physical exercise may be over but I walk up hills etc.
Reading problems other folks have I consider myself lucky but do work hard at keeping well. I have early nights, have reduced my hours at work( less money, frustrating) eat healthily( mostly!) push myself with regular exercise even when I don’t feel like it and try to keep my weight down. It’s hard, it but as I get older I want to stay well.
May want to set-up a Google Alert for Information Flow on Dexpramipexole. It was originally a drug used for ALS, but is no longer prescribed for that purpose. However, a while back it was noticed that it was very effective in depleting eosinophils (more so it seems than certain Biological Drugs) and does so on a par with Oral Steroids, which also deplete eosinophils. Dexpramipexole apparently does not have the same side effects as oral steroids, hence the current interest in it.
Dexpramipexole is being scheduled for phase 3 trial for possible use in reducing high eosinophils. While this is of no help at this time, it may be of hope for the future (couple of years away as yet, if phase 3 successful).
Also keep an eye on Dupilumab, another Biological Asthma Drug which the NHS might offer in the future.
I’m no medic so have no idea if either Dexpramipexole or Dupilumab would be a good match for you, plus - of course - there are risks with new / recent drugs, as side effects / dangers may not be fully apparent until drugs have been widely used for several years.
A certain amount of safety data already exists for Dexpramipexole (i.e. as an earlier ‘approved’ ALS Drug) which means it will have fewer safety hurdles to overcome in order to gain approval / licence for treatment of eosinophils ‘IF’ the planned phase 3 trial pans out OK.
My only advice about steroids , is don’t rush it , come down by 1mg a week or 2 weeks however long u think your body will allow
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