Choosing the right DMD can feel like a daunting task. In this honest account, Helena shares her MS and Tecfidera journey. Read on to find out her take on side effects and tips for taking it.
When I was diagnosed with MS in 2007 there were about five DMDs to choose from, but I wasn’t entitled to any of them. It was a case of wait and see. Even though I had quite a lot of relapses leading up to my diagnoses and the following months after, the neurologist didn’t feel I needed to start on one.
I was also thinking of starting a family, and back in those days, no disease modifying drugs were allowed if you were pregnant (that’s changed now). Luckily for me, after a difficult first year, I stayed stable and relapse free.
Fast forward to November 2014 and two children later. I was on my last month of maternity leave when I got optic neuritis. Perfect timing.
Just as I was about to go back to work, I couldn’t see properly out of one eye.
I approached my neurologist and said, “Look, I think it really is time to put me on a DMD.”
But the criteria back then meant that I had to wait for another relapse within a year to qualify for treatment.
It wasn’t within the year, but in 2016, I started having weird jolts in my body. I can only describe them as being like that feeling of jerking yourself awake when you fall over in a dream.
Only I wasn’t falling anywhere.
I would be sitting at my desk minding my own business when sudden jolts would roar through my body.
I thought that maybe I’d fallen asleep, but it would happen when I was walking around too, which caught me off balance. Also, I started having a constant buzzing in my right foot, like I had stepped on something that had an electrical motor in it.
I called my MS team up and said, “Look, this is happening, it’s 13 months since the last relapse. Please consider putting me on treatment!”
They were very understanding and agreed that it was time. We sat down and looked at the MS Trust’s Decisions tool together, narrowing it down to two drugs, Rebif or Tecfidera.
As I wasn’t planning to have more children, I wanted to go with the highest efficacy drug I was entitled to, so I picked Tecfidera.
With Tecfidera you take two tablets a day, every day. I get them delivered to me in a box that holds four weeks’ worth. It’s quite a simple process, as long as you are in to take the delivery, otherwise you have to pick them up from the delivery office.
I had read up on side effects, and the two most common ones were stomach problems like diarrhoea and cramps, plus a rash-like flushing sensation in the skin.
I seem to have a bit of an iron stomach and suffer a lot from constipation, so my MS nurse jokingly said, “Maybe the side effects will get your stomach going.”
But it didn’t and I’ve never had any stomach upsets.
Flushing however, I do get.
The first time it happened, I was amazed! I went red, patchy, and itchy all over. I had to run into the bathroom and lift up my jumper as it felt like I had sun burn. It lasted about 20-30 mins and then went away.
It got better as my body started to get used to taking the drug. But I also started noticing a pattern. I would get the flush after the first tablet in the morning, and not the evening one.
I started seeing suggestions that you could eat something slightly fatty, like peanut butter, when you take the medication.
That approach helped a bit. But an even better strategy for me is taking the first dose with my lunch instead of breakfast. I make sure that my stomach already has something in it, which makes a huge difference.
I still get the flush now and again, but it’s not so extreme. Mostly I get hot in my face and weirdly in my scalp, which can get tingly and itchy.
I take my second dose just before bedtime now instead of at dinner time.
Some female friends have jokingly hinted that this flushing side effect is a good practice run for menopause!
I have now been on Tecfidera for seven years, and touch wood, no relapses, or new lesions since.
Tecfidera does lower your white blood cell count, so you have blood tests every six months to make sure that the levels don’t drop down too much. That lower blood cell count can lead to a risk of PML, and you might have to come off the drug.
I used to travel into the hospital for my blood tests, but lately I’ve manged to get the tests done with my GP, which makes it easier and cheaper for me.
For a while, I was quite low on white blood cells, so I was going for tests every three months instead, but they seem to be on the up now. It does seem to mean that I get colds and infections quite easily.
I try to apply what we learnt during Covid times about keeping infection risks low, but with two kids in school, it can be tricky.
Overall, I’m happy with my choice.
It has kept me stable for many years, it’s quite easy to take, and I find the side effects manageable, even though getting flushes can be annoying at times.
This is one of a series of personal stories about all kinds of MS drugs and treatments, written by people living with MS. If you would like to, you can share your story to give other people some context for their own decisions.
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