mepolizumab

[Wheezer2018]

Anyone on here started mepolizumab ?

I’m on the waiting list for funding and hopefully will start this next year

[Shellc]

There are few on here who are on it , I was on it up until October when it was decided to take me off it as was brilliant on it and had side affects from it. Waiting in resilamab now

[Clanmacbeath]

I was on it for 5 months during the summer and my asthma was the best its ever been. However, sadly the side effects were just too much and my specialist took me off it. Im now waiting to start relizumab in the new year.... funding permitting. I know a number of people on here have got along brilliantly with the mepo and its really been a game changer for them so I hope it works out for you too.

[Wheezer2018 in reply to Clanmacbeath]

What side effects did you get ?

[Clanmacbeath in reply to Wheezer2018]

Hi, my joints became very painful and inflammed which got worse after each injection. By the end I was struggling to walk and get out of bed. For the first 4 or 5 days after each injection i felt like I had flu which wasnt great but i could've coped with that if that was all that happened but sadly the joint pain was making life unbearable and it was decided that I should stop receiving the mepo. I was upset at the time because my breathing was great. We all react diffently to these new drugs so fingers crossed its the one for you. Dont be put off by my experience as lots of others have done really well. It just wasnt the right drug for me. Maybe the next one will be you just never know and im prepared to try anything if it will improve my quality of life.

[Shellc in reply to Clanmacbeath]

I was the same had your joint pains resolved now ? My joints pains have but I’ve been diagnosed with tendinitis in both arms which I put down to the mep but 2 months down the line it hasn’t

[Shellc in reply to Clanmacbeath]

I too found the same , what side affects did u have

[Clanmacbeath in reply to Shellc]

It was mainly the joint pain which I struggled with. My feet also went numb and then burning hot at times. My arms would tingle and I would drop things or my elbows would lock into place and I wouldn't be able to move my arms for a couple of minutes at a time. It was all very random. Since my last injection in July the joint pain has just about ceased but im still struggling on a morning. Its a shame it hasnt worked for everyone but hang on in there hopefully we will get the one we need one day.

[Shellc in reply to Clanmacbeath]

Can I ask have u had a blood test to see if eosphil are still high therefore you can have the treatment , I had a blood test on Wednesday to check mine and they are zero , I had my last mep in September , it means I’m not eligible fir resilamab, having another blood test in March to see if different. On one hand it’s good as asthma is stable, I wasn’t sure I wanted it until pains in arms have been sorted so it’s kinda made up my mind fir me

[Clanmacbeath in reply to Shellc]

Yes they did check mine and said they were high which they always seem to be. I have just suffered another exacerbation and they said that they will now push for me to get onto the resiluzimub. My condition is very poorly controlled despite both mine and the respiratory teams best effort.

I wouldnt want to start another drug if i was having any sort of pain like yourself. So i think your being wise to hold off. Fingers crossed you get sorted soon.

[Shellc]

I also tried Xolair but that was not good either , I’m down fir resilamab but I’m in two minds whether to have it , these biologics seemed to be the way asthma is going to be treated , I worry at the long term side affects and this are new

[Sparkimoore]

Hi!

I’m having my 21st Mepolizumab next week. The only side effects have been UTTER exhaustion for a good week after injection, tho in the last few months this has lessened. Altho my blood results improved dramatically, physically my breathing is as bad as it’s ever been. Many people have had miraculous results. Maybe you will be one of the lucky ones. It seems have reached its max effect since I was instructed to very carefully & slowly reduce my steroid dose. Got as far as 6mg but I’m deteriorsting again. I also am waiting for Reslizumab or retoximab as I have Churg Strauss syndrome & the severe asthma is just part of it.

Good luck & hopefully 2019 will be better for us all!

Rose

[EmmaF91 Community Ambassador]

I’ve had 2 injections so far of mepolizumab. It’s seemed to be brilliant for my lungs - this is the best cold snap I’ve had since 2013 before my severe asthma kicked off! Unfortunately I’m having a lot of side effects - mainly bad aches and pains in most joints, but also headaches, spots, longer recovery periods (from exercise/injury/illness) and now weird sensations in my feet and calves 🙄. I’m hoping things calm down over time as my lungs seem to love it!

[Jeecamgunn]

Hi I have just had one injection so far. My cough has improved a lot. I also had a viral infection and for the first time did not progress into a chest infection so fairly positive . Only side effect I have is fatigue but not a bad trade as far as I’m concerned. Good luck. Well worth giving it a try