Asthma UK community forum

Mepolizumab

Anybody on here been given it yet?

Has it improved matters?

I am on the waiting list but it will be serveral months - diagnosed with eosinophilc asthma last week while on leave - tonight I have to back in work and tell my supervision that I will need monthly injections at the hospital.

I am not looking forward to it - I feel absolutely spent.

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I have had 4 injections now and haven't had a booster course of steroids since (see my earlier posts)

I feel fantastic!! I keep expecting to get wheezy- wake up every morning...and feel fine. It is an add on treatment rather than a cure but is the only thing, apart from steroids, that has worked. I have had no side effects whatsoever.

Hang on in there and I really hope

it works for you.

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I have also had 4 injections and I feel well with no side effects but I think it may b a bit too early to express total success. I would like to see if there is a significant improvement in 6 months time. I was on methotrexate for several years but I have now stopped on advise from my consultant. Mepo. Seems to be the ideal medication for eosinophils asthma patients. Hope the above information is helpful.

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I've had 2 injections and I have to admit it's not done much yet, in fact the inflammation in my lungs had gone from 37 to 63 (on that little test they do when you have to keep the cloud in between the 2 lines)between the 2 injections. However the consultant said it doesn't mean it's not for me and it can take a while to know if it's working so I'm hopeful that after the 3rd or 4th I will at least be able to lower the maintenance dose of steroids I'm on.

They do the injection to groups of 3 of us at once where I go and the 2 others I am with both said they feel so much better already, one of them was really happy because when his grandson was round he was able to run about with him without even thinking about it and he's never done that before.

So to be fair even if it's not for me 2 out of 3 is still a positive sign.

I hope all goes well with work. I'm sure they will understand. My husband had to tell his work he needed to be available to pick me up for a few months after the jab (because the dr told me it was advisable not to drive for a few hours after but then the lady who actually gives it said "I don't even know why he said that") which is about an hour or so drive there and back. And they were fine with it even though he's only been there 6 months.

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Like Mintoes & Josephone, I too have had 4x injections now (1 every 4 weeks), my next is due on Friday (1/9/17) I have had no ill effects from the injections, I have had no exacerbations or need for steroids since I started on this. I do normally fair better during the summer months anyway, so I'm hoping it will get me through the winter without any of the usual problems.

I was swapped over from the Omalizumab (Xolair) after 4 years (4 every 4 weeks) it seemed to becoming less effective after I had a bout of pneumonia.

I was also put on Fostair 200/6 last October, that seems to have helped improve my peak flows I am 500+ 3-4 days a week, rather than once every month or two.

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Hi! I'm in Jersey so we were able to get MEPOLIZUMAB earlier than rest of uk. I had my first injection on 23 May but I feel no better in myself whatsoever which is deeply disappointing BUT my eosinophils which were always in high HUBDREDS into low thousands even on hi dose steroids are suddenly 10 in the last 3 months!! I was told these are encouraging first signs but we are planning on reducing the mycophenalate dose out from under. ( Mycofenalate is highly toxic & I have many severe side effects but it's controlled the asthma brilliantly) I've had no real side effects ( headache is the main one) but it does seem to be interacting with my blood sugars so the steroid induced diabetes is way out of control no matter the hi doses of insulin.

I wish you luck. If you'd like to keep in touch we could do so by email if you like.

Rose Moore

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Hi just read your post today as I'm also a sufferer in Jersey and am on Rituximab at present for EGPA but this new drug has been given clearance for more than asthma now .I feel I must request it from my consultant soon as this present treatment is only good for a short while

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Do you see Dr Amar? I expect so.. as I do too. That was an old post you replied to.. I’ve now been on MEPOLIZUMAB a year now. Bloods good, managed to stop the Mycofenalate that was controlling the asthma tho had many terrible toxic side effects, but I still have no change whatsoever, to my horrendous breathlessness..

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Thanks for your prompt reply. My condition incorporates asthma ,chronic sinusitis but these are just precursors to the main condition which is E.G.P.A.or by is old name of Churg Strauss Syndrome which is a v serious vascular disease which incidentally Hamdi Amar diagnosed after exhaustive amount of tests. 60 mg of prednisolone daily plus azathioprine 150mg.Last Oct I was put on Rituximab infusions by Rheumatologist Richardson .That worked after 10 weeks in my system but only after a couple of months and that stopped after 3 months.That is why I want to try Mepolizumab as it's helped people like me.I wish you the very best in your ongoing treatment and recovery.

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How many of you were taking prednisolone?

What dosage? Initally I needed a course of pred every 4-5 weeks (40mg) however now it is down to about two weeks - either my condition is worsening or body is getting used to the stuff - I have been on it for two years.

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Great to see positive responses- I've been told the Mepo could take up to a year to work fully.

I have been taking reducing doses of pred, 30-40mg, almost monthly and taking longer and longer to get better each time.So, whilst not on a continuous dose almost constantly on them-if that makes sense! I have had almost monthly "booster" doses for at least 18 months and before that it was probably every 6 weeks. I was getting really fed up.

I have stayed on a very low dose with the eventual aim to stop the steroids completely. I

am now on 3mg, reducing by 1mg a month assuming all else well.

My consultant has said that I may still need the higher doses just less often hopefully.

This has been the longest time I've been without a high dose of steroids for probably 3,4 or more years, and hope its months before I need them again. I'm afraid to be too hopeful as I know it doesn't work for everyone but all signs are good at the moment...

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Hi, I am also on the waiting list for mepolizumab.

I also have various joint pains and was wondering if they could be caused by elevated eosinophils. Do you have less joint pains after a few mepolizumab injections?

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Hi I have also had 4 injection. Only side effect is I am really tried for about 24 hours after. My steroids have gone down from 40mg for the last few years and 10 day stays in hospital to top that up. To 25mg this month and I feel great. Hope it works for you.

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I'm currently on omalizumab (xolair), have been for the past 2 1/2 years. 4 injections every two weeks. Their plan for me is to come off it when my season ends in a few months and go onto mepolizumab. I could potentially come off it and just stay on my inhalers and then if I get worse go onto mepo. Pretty unsure of it all yet though

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Hi .. not yet but I’m being considered, currently on xolair but after 12 months I’ve been unable to reduce my daily prednisone (currently 20mg)

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Hi i have had 6 injections so far. My asthma is pretty bad and I have currently been on 40 mg of prednisone for a month and antibiotics for chest infection. I have nebulizer and inhalers. Today my asthma nurse said it doesn't look like the injection is working and it should be discontinued. However I was told it can take a year to show improvement. I want to continue with the treatment but I have to wait unti! Nurse speaks to consultant tomorrow.

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