I thought that it would be useful for those potentially starting down the Disease Modifying Drug (DMD) route for me to have a quick update on how my body (and mind!) are coping with the Tecfidera.
I started just over a week ago, initially on the lower dose of 120mg twice a day, then moved onto 240mg twice a day. As stated in my previous post, I was pretty anxious about the reported side effects; flushing, stomach problems, PML…but I bit the bullet and started, heeding the advice to take it with a meal to reduce the likelihood of unpleasant side effects. So far, it is pretty much what I expected. Within a few hours of taking my first dose, a creeping red rash spread from my face to my chest, to my arms, back and legs. It felt like a heat rash; like I had been out in the sun for too long, but it wasn’t painful. It lasted for about an hour then went away. This rash now appears randomly; I don’t always have it after taking the Tec, but I do often feel the prickly hot feeling, look in the mirror, but then can’t see any rash. I have also been generally feeling warmer – which isn’t necessarily a bad thing, as my internal thermostat is usually set to cold as a default!
Taking the double dose has brought on a few more side effects. As well as the flushing, I have had an upset tummy since starting the new dose. This appears to be manageable at the moment, as I have been off work, but it is again quite random as to when it is going to strike. Headaches and itchy skin are other reactions that I have experienced, as is my first cold in over 3 years. That sounds like an arbitrary side effect, but I am convinced that my sudden coughing and sneezing are linked to the fact that I am now suppressing my immune system with Tecfidera. Since I started following the OMS programme, which includes following a plant-based diet, I haven’t had as much as a sniffle. I am putting this down to an abundance of fresh fruit and veg and the lack of dairy in my diet. However, now that my immune system is reduced (which is how Tecfidera works, so that my body can’t fight against itself), it seems that I am naturally more susceptible to catching any bugs floating around. Still, I am sticking to my OMS diet and keeping my fingers crossed that everything will soon settle down – I have an appointment with my GP in a few days to discuss how I am getting on with it all.
Emotionally, I actually went through a period of feeling elated and hopeful when I first started taking the Tec; I felt like I was doing something for myself. For a few days I even told myself that this will be it – I will start seeing some improvements with my MS as a result of taking this medication. But the longer I take it, the more I am not so sure. As my Neurologist explained, he is hoping that the Tecfidera will aid me in progressing more slowly; he made no promises of it changing or improving the symptoms that I am facing every day. So, in some ways, I guess that it is a leap of faith; only in a year or two’s time will we be able to see if the progression is slowing down. It is something that we have to reflect on in hindsight.
When debating the use of Tecfidera, I had a brief discussion with my Neurologist about Secondary Progressive MS (SPMS) – whereas I feel that I have now progressed to this stage, my Neuro seems to be more reluctant to make that decision. The MS Society define SPMS as:
a stage of MS which comes after relapsing remitting MS in many cases. Neurologists generally agree secondary progressive MS is a “sustained build up of disability, independent of any relapses”
I guess from his point of view, the fact that I had active lesions on my last MRI scan two years ago, is enough to justify treating me as Relapsing Remitting MS and the use of a DMD. I haven’t had a definite relapse since 2005, but I guess we don’t suddenly click our fingers and become SPMS, it must be a gradual shift between the two. I just hope that I don’t try this medication and it have minimal benefit when I could be trying something else. For example, there is quite a lot of research around the use of statins for SPMS. Ultimately, though, there are no known medications proven conclusively to help with SPMS; I suspect this is why there is often such a reluctance to categorise someone as SPMS.
So, I shall continue with the Tecfidera, hoping that the tummy upsets will lessen before I return to work. One positive of taking the Tec is that I have already received an appointment to see an MS Nurse in January; seems like as long as you are on medication, you aren’t forgotten and left to fend for yourself, as I was before I was on DMDs. But that is a discussion for a whole other blog post 😉