The Verdict!!

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I have been fairly quiet recently mainly because I was terrified. I have had 3 doses of Mepolizumab and was due to attend clinic and see my consultant for the verdict and find out if I am staying on it or not.

The good news is that I am staying on it for now.

Clinic went well. I am so glad that I had that horrific hospital admission that made me decide to change consultant because it has been the best thing I have ever done. It has come with some issues but overall it has been one of the best things I have done.

I had lung function and FeNo both of which were marginally better but what I have noticed is that I am more stable overall. Recording my peak flow has been super helpful and I can identify what causes were when they dropped whereas before I had no idea and it was all over the place. I would love my peak flow to increase but I am happy for stability over gains (gains are unlikely due to the fibrosis in my lungs now).

The other difference this consultant has decided on is with regard to my steroids. Previously it has been a rush to get me down to the lowest dose possible and see how I go but that has always ended up badly and I spend more time on higher doses and it felt like I was on a rollercoaster all the time. Now, as much as we want to get me down to a reasonable dose and hopefully off prednisolone (wish me luck) we are acknowledging what has happened in the past and he kept me on 20mg which felt like ages (3 months) and then alternating 20mg and 15mg daily (2 months) and now I am to stay on 15mg until February March time and then we will readdress reducing it further.

So many people have asked me if I think the mepolizumab is helping. It is so hard to stay. I think it must be as I have been more stable but I worry that this is due to the prolonged prednisolone and super slow reduction but what I am hoping that it is a combination of both. I guess the time to tell what is doing what is if I get unwell (touch wood I don’t) and I can see how quickly I can respond to treatment and not need invasive treatment. I am aiming for this as know hospital is going to happen as my consultant has said this. He said he would have no worries about admitting me to hospital if either he or myself thought my asthma was not great.

We are also changing one of my inhalers. For the first time in as long as I can remember I had an outpatient clinic where my medications were reviewed and we looked at what I needed to keep taking and what could get binned. The only change he wants to make just now is removing the seretide inhaler and replacing it with Relvar a newer once daily preventer inhaler. He wants me to continue taking some extra fluticasone at night to tide me over as I still have quite significant dips in my breathing at night.

Im happy I now have a plan. Know roughly what is happening with my asthma and asthma care. Over the winter period I will be seen every 2 weeks. Monthly clinics with my consultant and then in-between I will be up with the asthma nurse specialists getting my injection and review there. Also should there be an issue I just have to call in.

The one thing out of all of this which I cannot let go of is why did it take throwing my toys out the pram and move consultants to be able to get in control of my asthma or have a plan to get control of it. I just want answers and I know I won’t get them but I am now trying the treatments I have been asking about for a good number of years. I know dwelling on it won’t help but when its your life that has been suffering it is hard.

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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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.