I am about to start a new phase of my MS journey…..a full 25 years after my first MS symptom, I am about to start a Disease Modifying Drug (DMD) called ‘Tecfidera’.
Will I have to inject myself? How is it going to help me? What will the side effects be? I had all these questions and more when my Neuro pointedly recommended that I take the drug when I saw him a couple of weeks ago – in fact he said, ‘I am going to be your Father now, and tell you that you have to take it’.
The answers to my questions were as follows:
It is taken as a pill twice a day
He doesn’t know if it definitely is going to help me, but he hopes that it might help my disease progression to slow down
The side effects can include flushing, abdominal pain, nausea, vomiting, indigestion, itching… oh, and, in EXTREMELY rare cases, PML, a potentially life threatening brain infection
Ooooh, where can I sign up?! Sounds tempting, doesn’t it?
I actually refused to take Tecfidera when it was first recommended to me, two years ago. When I asked at that time how it would help me, I was told that it would reduce the number of relapses I have. Considering I hadn’t relapsed in almost 9 years at that point, it seemed a bit pointless. Add to that the fact they expected me to drive a 3-4 hour round trip every month just to collect the medicine and it was a no brainer for me to say no. But this time? Well, circumstances have changed. For one thing, they would now deliver my meds to my house – within a pre-arranged two hour time (as easy as a Tesco delivery!) Secondly, and perhaps most importantly, I just want to stop getting worse. I am desperate to stop getting worse. So desperate, in fact, that I am willing to pump my body full of an immunosuppressing toxic drug. Because as much as I stick to a low saturated fat and dairy free diet, as much meditation as I do, visualising myself ‘healing’, as much as I bounce on my mini trampoline to keep my legs strong… I am still progressing. And pretty rapidly too.
EDSS stands for ‘Expanded Disability Status Score’ and you know what? My score has gone from a number 1.5 in 2012 to 6 in 2016 (click here for a breakdown of the stages). That is a huge jump, from ‘no disability, minimal signs’ to ‘requires a walking aid to walk about 100m with or without resting’. I am more than half way up the scale… and guess what number 10 is on the scale – ‘death due to MS’. I am sorry for being dismal and gloomy, but I am trying to be completely honest about my decision to take the meds… maybe as much to myself as to others. I have always had 100% faith that my ‘healthy living’ would help me to heal, or least slow down my progression.. but thus far it hasn’t. Or maybe it has and I would be even more disabled if I had not started it.
Either way, my plan is to stick to OMS and to take the plunge and try the Tecfidera. I feel apprehensive – I’m the kind of person who prefers to drink a glass of water to combat a headache than down a paracetamol – but right now, I am at the stage where I think ‘whatever it takes’. I have been scaring myself watching people experiencing Tecfidera side effects on You Tube, but ‘whatever it takes’ is the tagline of the OMS recovery plan and I am going to try and remember that when/if I am doubting my decision. Any slowing down of my MS progression will be worth it, even if it means I have to spend time feeling permanently sunburned or with my head down the toilet.
I will keep you updated! I would love to hear from anyone else on Tec too.