A year on monoclonal antibody treatment

I can’t believe it is a year since I started on mepolizumab (mepo) a monoclonal anti body treatment to suppress my eosinophils in a bid to help my asthma. The big question is as it helped?

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I am not sure. My consultant seems to think it has and I am to continue on it. My eosinophils have dropped dramatically however I am still on the same maintenance prednisolone dose and we have not been able to reduce it down and I am no longer working just now. I was in clinic last month speaking to my consultant as I was having second thoughts about staying on mepolizumab because I cant see a huge amount of improvement but he feels it is worth staying on it and I have been approved to stay on it for the following reasons:

  1. My blood eosinophil count has come down (I’m not sure of the exact figure just now but we are checking again next month)
  2. My peak flow although overall it is lower than it was the variation in peak flow readings is no longer there and it is a lot more consistent- I cant complain about this as now I know where I am each day compared with before where the diurnal variation was huge.
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  3. Although I have had a near fatal attack and several others requiring hospital I have been able to recover from them a lot quicker than before. My consultant described some of my attacks as spectacular (Im not sure how I feel about that).
  4. Chest infections and colds have not quite taken the hold that they were before and again recovering has been a lot quicker.
  5. My quality of life is better (although for me I am still really struggling with the idea of not being at work doing the job I love).

Looking at the reasons my consultant listed I really cannot complain and can see that the mepo has had an impact. It has not had the wonder drug impact that I hoped for and that I have read many have had but I am alive and have a great team behind me so really need to be thankful.

I did some work a good number of years ago for Astra Zeneca where I met some other asthma patients. One young lady I met had their life totally transformed by Xolair going form being intubated numbers times, not being able to work and very disabled by their asthma to having a full time job and minimal asthma issues. I think deep down part of me was desperate to have this effect. I remember thinking after I was told I would start mepo that I might be able to get back to the gym, start running again and playing lacrosse and golf but that has not been the case which is a bit disappointing for me but I was told not to get my hopes up too much.

Even though the mepo has not been the wonder drug that was going to transform my life I am so grateful to my consultant for being willing to try it and keeping me on it. Apart for the hopes of it transforming my life I was worried about the side effects it might have. On the whole I have really not had any significant side effects. I have been finding I get a bit of a local reaction for about 48-72 hours post injection where the skin is red and hot. Initially when I first started getting the injection I did get a really bad headache, backache and just a general feeling of being unwell. After about the 3rd injection this went away. I have found that if I am a bit under the weather in the days leading up to getting the mepo then I tend to get more side effects in terms of headache etc but nothing that has been so bad it is not worth getting the injection especially as I am not having to get up and work set hours etc.

I have come across different stories on social media about peoples experience of biologics but one thing I have found is the number of people weighing up the travel for these treatments. When you asthma gets to the severe end of the spectrum most are referred on to a tertiary centre where their care is managed and their local hospital is there as a support team but do not take the overall control of your management. There are not many tertiary centres so there is often a lot of travel involved. I am lucky that Id not have a huge distance to travel but I think even if I did I wouldn’t mind because I know the team are doing it in my best interests and the least I can do is travel although it may be more difficult when you factor in that you do have severe asthma which is already controlling your life but if there is a chance that this is going to help then the travel is worth it!!

Another discussion I had with my consultant was about new biologics that are coming out. He is hopeful that dupilumab may have its use altered and some asthmatics may qualify for it. Just now it is only used in adult eczema in the UK but in the States there have been people on it who have aspirin sensitive asthma which is what I have except that I am anaphylactic to aspirin and salicylic acid so fingers crossed this gets a green light at some point as we both think this might work well for me.

The use of these monoclonal anti body drugs is dependent on such specific criteria and the patient needs to meet them and the consultant needs to be able to provide evidence for it before you get the green light. Because of this many are not getting the opportunity to try it and see if it has an effect.

For me I did not match the criteria for blood eosinophils but my consultant was able to argue the case. He was able to show that the prednisolone I am on will be surpassing eosinophil production and if i was not on it then my count would be elevated but it is too dangerous to take me off them or down a significant amount just to get the blood result. I would say it is worth asking your consultant to see if there is potentially a way to justify why you need to try this treatment and then be approved for it. It is so frustrating that a drug you are trying to get off is the main factor to many not meeting the criteria, but if you came off it then it is so dangerous as your asthma can go so out of control without it. I can see why they have strict criteria because the drugs are really expensive as they are such targeted drugs but in time they will drop in price and hopefully the criteria for the drugs will also be more flexible too.

Overall I am glad I have had the chance to try mepolizumab and being able to stay on it. If I had not changed consultants I doubt I would even be considered for it which is a scary prospect as I have no idea where I would be with my health.

If anyone has questions about monoclonal antibody treatment please ask!!

2nd dose of Mepolizumab in the bag

Thats the second dose of mepolizumab done and dusted. Now to wait till next month for my next injection next month.

So many people have been asking me how I feel and if the new drug is helping or making a difference, or ask me when I will start noticing the benefits. Its really hard to tell. I am feeling some positive effects from it I think and there have been a few side effects but nothing major.

The most telling sign is that I have noticed my peak flow has been increasing and I have not been in my red zone since the 19th September. That is a full 10 days. It may not seem like a great achievement and many will not agree with me for being excited that I have gone ten days and not dropped my peak flow but the nature of my asthma has meant that my peak flow is all over the place and so has my control been. I must say my asthma control has not been poor through my own choice and I have tried desperately hard to keep it n control. I have not managed to get into my green zone since June but I am happy with that. Better to be stable and sitting in my amber zone stable than jumping up and down with readings all over the place. I think slow and steady is the way to improve….it has after all only taken 14 plus years to get to this point.

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Other than looking at peak flow results and keeping track of how much salbutamol (both nebuliser and inhaler) I am using how do I actually feel? DoI feel different?? It is hard to say. My prednisolone dose has not been reduced and has been kept at the same dose since I was discharged from hospital in April. I am finding it hard to identify if feeling well and pretty stable is because of the steroids or due to the introduction of the mepolizumab. Once I have my 3rd injection I am hoping my consultant sticks with his plan and we can start the slow process of reducing the prednisolone. I am aware I won’t get off it (or may get off it and converted to hydrocortisone due to adrenal failure) but lower will suit me just fine.

Since starting the mepo I have not been to bad with side effects. After the first I had a bad headache the first time but the second dose was not as bad. A bit of a sore head but nothing to major. The one thing I have noticed and I am not sure if it is coincidence or what but I have been waking up in the morning feeling like I am drowning or choking on the amount of phlegm I have on my chest. I have always had a bit of a productive chest- it goes with the territory of having lung disease but this is different. I am still not sleeping super well but I am wondering if that because I am sleeping slightly better and not waking up so much the phlegm is building up rather than me waking having a cough moving all the stuff and then settling back down. I guess the good thing is that all the movement of phlegm means I (fingers crossed) won’t be as susceptible to a chest infection and may notice them quicker as everything is moving so will see the colour changes. Although this is good that I am moving stuff in my chest I find in the morning I am having to do more saline nebulisers and a lot of physio to move it and it has often made me sick because of it. This is a minor price to pay though in terms of side effects.

With this medication as I have said before I won’t see improvements over night but will over time and I think I am starting to see them. The other thing I have noticed and finding it more and more is that people are telling me how well I look and don’t sound as bad which is probably the best part. The past 3 weekends have been jam packed full of different things- mainly lacrosse and by the end of each weekend I have been on my knees longing for my bed but I have managed them. I have managed to spend these weekends on the side lines of a lacrosse field, or in the middle of a lacrosse field coaching  with either Edinburgh Uni or Scotland (Scotland is just goalkeepers and assistant manager). A lie in over a weekend would be lovely and in the past weekends have been all about recovering and getting myself prepared for the next week of work but I have been able to use these weekends to do what I love and not suffer at work. Don’t get me wrong it was so hard to get up on Monday but I think most people find it hard to get up on a Monday morning for work so being what I called “normal” person tired is awesome.

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One thing I am very thankful for is having people around me who can keep me grounded and don’t let me get ahead of myself. I have always been someone who will try and do the long distance run before I can jog let alone walk so even though I may get grumpy at people holding me back I do appreciate it. Coach Dave at Scotland Lacrosse knows when to reign me in and make sure I just take it easy and ensures I just walk or rest when I perhaps am going full steam.

I have an excitement in my life just now something that I have not had in a long time. I look forward to being able to plan things in advance and not worry that I may need to cancel or not be well enough to attend. I am aware that there will still be times when my lungs just stop me from doing what I want but through this I have also learnt to appreciate life, not take it for granted and just live for the moment.

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When is it going to start working??

One thing I have found since starting mepolizumab is I am constantly questioning myself and am almost preoccupied thinking about what results I may see and how my asthma will improve.

Its hard because with this drug unlike others there is no knowing when you will start getting the benefits and if you will get the benefits. If your chest is tight and you take some salbutamol your airways will relax and you can breath again without so much effort, or if you have a chest infection and given high dose prednisolone you notice the effects of it both positive and negative (I’m talking about the insomnia, restless legs, hunger) but with this I have no idea when I might start to feel better.

I track my peak flow and keep thinking I am seeing it trend upwards and wonder if this means the mepolizumab is working but then today I came crashing back down to earth. It was a bad night- up every hour, coughing, wheezing and getting more and more irritated with the noise coming from my chest. I knew before I blew my peak flow and it would not be good and I was right. It dropped- a whole 150l/min.

I know that just because of the mepolizumab I am not always going to have great peak flows and my chest will still have hissy fits but I guess what I am struggling with is knowing if my chest is just more stable (I have not been allowed to drop my steroids yet either) or its more stable because of the mepolizumab. Its a bit of a guessing game.

By the time I have my next injection in a few weeks I will have a lot more data and will have been able to capture a month of peak flows 3 times a day and will be able to get the average peak flow compared to previous months.

For now I guess I just need to watch this space!!

New drugs, new start?

I haven’t written in ages and I apologise for that but I really did not know what to write and how to write without getting myself angry and upset as I feel the last 8 years have just been a total waste.

I wrote a while back about changing consultant and hospital because I was really finding the relationship I previously had with my consultant was no more and my health was getting worse, I was getting put on more and more drugs and constantly riding a rollercoaster of feeling well and being on high dose steroids to feeling rubbish because my steroids were reduced.

So lots has happened since switching consultant. My first appointment I finally felt someone was going to do something to help. I was put forward by my consultant at their MDT meeting to see if another consultant would agree to me being a candidate for mepolizumab. Due to the cost of the drug you need meet certain criteria and have a second consultant agree to it. Thankfully another consultant agreed and the wheels were in motion for me to start.

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I didnt really know what to expect. Its not like other drugs you get by injection like any sickness or steroids where you notice a difference pretty quickly. This one it can take a few weeks before you notice positive effects from it but Im not sure what I will feel and what the positive effects will be. Will it be the nights are better and I won’t wake up so much needing meds or will my peak flow be increased or able to do more during the day with less symptoms??

Time will tell how it goes. For me because of the steroids I am on they are going to use my maintenance dose of steroid a marker for effect of the mepolizumab so if I can reduce this then we can move forward and continue on the mepolizumab but if I cant reduce them without my chest getting worse then I won’t stay on it and will be back to square one and trying to find something else to help me.

Speaking to the nurse they seem to have had really positive effects and not many people have had to stop. Also the side effects have not been too bad apparently. A bit of a headache and back pain seem to be the most common. My head has been killing me but it is easing off and if that is the only side effect I cant really complain because a headache is the least of my worries as the pain and suffering from my chest over all these years far out weighs a sore head!!!

There is deep seated feeling of anger in me which I need to get over but I just cant shake this feeling of having wasted my time with my old consultant. Everyone told me she was the best but I guess the best is not always what works and it really didn’t for me. I asked so often to try different things anything to try and get some stability even asked to stay on the higher dose of steroid as I knew this was what my lungs were happy with but it was always a no and just had to persevere and would get there. Clearly that didnt work as every attack I ended up in ICU or HDU and so much time off work. If it was not for understanding bosses I would be out a job and have no purpose or aim to try and get myself well. I am really angry that it took a horrible admission to hospital and me essentially getting so upset that I was getting no where and people asking me if I had tried x,y and z and all I could say was no and they look quizzically at me like I am mad because my asthma is so uncontrolled yet I have not even been considered to trial some of the more medications till now.

I need to keep myself grounded though. Even though the results of this drug in others has been fantastic I really don’t want to be disappointed and pin all my hopes on it to then be totally devastated that it doesn’t work or it doesn’t work well enough to justify keeping me on it. Even with the best results there can be from the mepolizumab my lung issues won’t totally be cured as the years of uncontrolled asthma have caused a lot of airway remodelling and scarring which cant be reversed.

Fingers crossed the next three months are full of good things and I can stay on the mepolizumab as I desperately want my life back or even just some of my life back where I don’t have to spend all the time I am not working resting to make sure I am then able to work the next day.

Will keep updating as I go and if I see effects from it.