New medication – Introducing Mavenclad

Week one of Mavenclad done and dusted. Actually I’m starting week two so I thought I’d get my initial thoughts and findings down in a blog in case it is of interest to others considering Mavenclad.

To be honest there isn’t much to report. Mavenclad is a five day course of tablets one month followed by a second week of the same the following month with no follow up medication until next year when I do the same again… weird. For me the dosage is two tablets day one and one tablet on the following four days but this varies so it could be more or less tablets than I take for someone else.

I had to make sure I took the tablet around the same time everyday, which wasn’t difficult as the drug company nurses phoned at that time each day to make sure I was doing ok. I also had to make sure that I did not take any tablets or medication for three hours before and after taking my Mavenclad to avoid any interactions between meds. It is not a huge tablet and is easy enough to take with water so no big issues there.

The drug literature and nurses encourage care when handling this medication, washing hands and surfaces before and after. To be honest I didn’t pay that much attention until I was told to keep the packaging at the end of the week so it could be disposed of by my pharmacy. Yikes, this must be seriously strong stuff!

So how am I feeling and what were the side effects? Well, during my Mavenclad week I stopped taking Fampyra so I think that has muddied the waters a bit so I can’t really say if what I’m feeling is because of one or the other, though I have my suspicions. I have been taking Fampyra for a long time, it is a drug to improve the quality and speed of walking.

For the first three days taking Mavenclad I felt completely normal, no better but no worse either. Days four and five were very different though. My legs felt very shaky making walking and balance really difficult. These symptoms coincided with me not taking Fampyra so I cannot directly attribute them to Mavenclad. I will say though, if this is life off Fampyra then I will be back on it as soon as I am allowed.

After a week or so the shakiness reduced and I am currently working on building up stamina in my legs but that could take a while. One thing I will say I have noticed since my Mavenclad week is that I feel more mentally alert. I am not staying in bed as much in the morning and find myself thinking things like – ‘I might walk to the shops’, my local shop is just across the road and I haven’t been able to walk it in quite some time. I have to be careful though, just because mentally I am up for the challenge doesn’t mean my legs are so I need to take things slowly. I did go shopping in a mall yesterday and almost had to crawl back to the car after two stores, so lesson learnt I’ll have to pace myself.

Another point I want to make is how weird it is to take a drug for MS for one week and then stop. I’m not sure how I feel about this yet. In some ways taking a daily medication feels reassuring, as if you are doing something everyday to protect yourself. That being said I did have a relapse and Mavenclad is hopefully going to be more effective for me at this stage. With my MS progressing as it is I definitely need some help and this might be the right drug for me right now. My daily pill box does look oddly empty now and I am not constantly being reminded by my phone to take my tablets. I suppose I’ll have to get used to that too, honestly I won’t know what to do with all that freedom!

MS Relapse – The Aftermath

OK, so that makes the past few months sound more dramatic and exciting than they actually were but it has been a journey anyway. The tail end of last year was pretty tough for me with worsening symptoms and a MRI confirming a relapse. But here I am in the new year and where has that relapse left me… well after the initial jubilation that the MRI results actually agree with how I’m feeling and the buzz of hospital visits and steroids I’m feeling a bit flat. The remitting part of my MS is predictably slow to show itself so now it is a waiting game to see what symptoms dissipate and which are keepers.

Here’s what I am struggling with – how long should you spend accepting what has happened, recuperating and giving your body a chance to heal before you power through with exercise and rehab?

My case was further complicated by the fact I caught a nasty cold so have been mostly bedridden for two weeks, thanks for nothing flu jab 😉 I understand that the only way forward is with hard work and physio but when you are sluggish and fatigued how far should you push yourself and how soon? Motivation is also at an all time low. Turns out I don’t mind being forced to down tools and stay in bed

Another consequence of my relapse is that my hospital care team have taken me off my medication in order to move onto a stronger option called Mavenclad, aka Cladribine. In theory there is no wash out period necessary between these drugs but a possible side effect of the new drug is lymphopenia which is a lowering of the lymphocyte count in the blood, this affects the immune system and can leave you open to infection. As mine was already a little low we have had to wait for mine to get to normal levels. In essence this has led to me being off MS medication since my relapse and that is an odd place to be. I’m not sure how I feel about that. On one hand it means one less tablet a day therefore less toxins and drugs for my system to cope with but on the other hand I’m at the mercy of my MS giving it free reign with my immune system.

This isn’t the first time I’ve changed medication, the first couple of times I found it very stressful. I have had a strange kind of bond with the medications while I was taking them and was worried the next medication would have more severe side effects or wouldn’t work as well, change can be scary. Each time I trawled the internet for information and views of others on the same medication before making a decision, which I found difficult and stressful. There is never a definitive right or wrong answer.

This time around I am a bit more laid back, this will be my fifth DMT so I’ve been through all this before and I think I am less stressed about it. What will be will be. This medication is pretty new and I haven’t found a huge amount of information or articles about people’s experiences with it online so I do not have much information to go on. I think that is why I want to document my experience of it. I want to keep track of how it makes me feel and any side effects. I hope that my writing about it will be useful to someone in the future and maybe make their decision to change or not a little easier. Fingers crossed all my bugs clear up and my lymphocyte count settles so I can get started! I’ll keep you posted 🙂