We need to stop Mepolizumab

Under a month ago I was writing about how I had been a year on mepolizumab. The drug that I thought was going to be my wonder drug and make my asthma easy to control or so I thought. You can read the post here.

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Part of me wonders did I know deep down that I would be stopping this treatment? I know in my last clinic I had asked my consultant if he thought I was benefiting from getting the drug. He outlined why he thought it was worth staying on it so we agreed I would stay on.

In just a few short weeks after that clinic and chat the words came out my consultants mouth that I didnt want to hear. He said “we are going to stop the mepolizumab treatment because I was not getting the results he wants and while on it I have had some of my most severe attacks”. He felt he could not justify me staying on it as I was still struggling so much and my attacks were getting worse again. He is also concerned about all the other issues I am having with my body which he cant say are due to the mepolizumab but equally he cant say they are not. He is worried about the unknown side effects from the drug due to it being so new.

To say I am gutted is an under statement. It was meant to be my wonder drug. It wasn’t as much as I try to convince myself it was working I cant be sure. It did reduce my eosinophil count which is the only result we can see conclusively that changed once starting it. Otherwise the things like recovering from attacks and bouncing back from colds quicker I cant say are due to the mepolizumab or if they are due to not working in the hospital. I cant say either way. I wish I could say it was due to the mepolizumab but I cant.

So what now??

This was the first question I asked my consultant as once again I feel like I am in a constant state of limbo, reliant on oral corticosteroids which have the be reduced but any reduction exacerbates my asthma again so I will be searching for that drug which can offer me stability. If only prednisolone did not have such awful side effects and you could stay on them with no worries- that would be magic!!

The good news is that there are new biologic treatments out there. There is Fasenra (benralizumab) which I doubt I will be eligible for. I am excited about the results people have been getting from Dupixent (dupilumab). In the UK dupixent is currently only allowed to be used in patients with skin conditions but over in the States there has been a lot of success for people with aspirin sensitive asthma. I hope that perhaps dupixent might be approved for use in asthma because I think the main issue which makes asthma control so hard to achieve is being anaphylactic to salicylic acid- a compound of aspirin which naturally occurs in just about everything.

Until then I just need to sit tight, do the best I can to keep my body as healthy as possible, minimising the risk of attacks and focus on getting better and have a positive mental attitude.

Feeling much better and more positive!!

Its now the end of the week and since my last post things have been a lot better. I must say the support I have received over this week from others who also have chronic health issues has been over whelming. It was both reassuring and shocking to read comments from people saying they could have written what I did as it could have been them. This is awful that so many people are struggling with their conditions and feeling isolated but then also gave me reassurance to know I am not over reacting about the situation I find myself in but it is perfectly normal.

But this shouldn’t be perfectly normal when living with a chronic health condition. It has really rocked me reading all these comments. I thought maybe one or two people might have had a period of time feeling similar but not the sheer number. It has really made me want to do something to try and combat this but I am not sure how and I am not sure what to do.

The wanting to do something was reinforced today even more so when I met up with another severe asthmatic in Edinburgh. It was so easy to talk and even though we had only met through a support group it was easy to chat and there was a mutual understanding of how shit life can be with severe asthma and the restrictions it can put on your life.

Feeling a lot more positive about things now and know I am not alone and can ask for help. It is not a weakness to need help but a strength to recognise when you need to ask for help.

Tomorrow I have a busy day as it is the Leith Gala Day at Leith Links and the ICU Steps Edinburgh support group which I am part of have a stall at it to raise some money for the charity and raise some awareness about us and what we are there for. In-between doing that I am at the Sick Kids for the launch of a children’s patient and public involvement group too and will speak briefly about my experience of being in a PPI group. After that a trip up to Thurso to see family to really clear the cobwebs and reset the clock ready to face the world again.