LDo I need to be on DMD’s if I’m not relapsing often?
Since being diagnosed 6 years ago I have been on three different DMD’s:- Rebif, Fingolimod and Tecfidera.
First two drugs didn’t work for me in one way or another but I was on Tec for a good 3ish years before I couldn’t cope with the side effects I was getting.
The drug itself was brilliant for my MS in terms of relapses, however, it give me nearly unbearable pain in my lower stomach.
It did not matter what I ate, when I took the actual pill itself, I was always guaranteed to be doubled up with cramps and spent more and more time in bed with hot water bottles trying to sleep in order to deal the pain.
After talking to my MS nurse we decided that I would take a two week break to see whether it was the tec or maybe it was unrelated. During this break my cramps subsided but I was still having them so next step was to come off naproxen as well. I had no choice to go back on it for my pain but also it did not seem to have an impact on my cramps either way.
As the tec was so good at controlling my relapses, I tried to go back on it by starting on the low dose for a month then up to the prescribing dosage. Again the cramps intensified even when I when back down to one high dose tablet a day.
During all this I was suffering with my depression and this all got too much so I stopped taking it and refused to entertain any other MS drug.
During this stubborn phase I lost my consultant to a witch-hunt so ignoring the thought of any ms treatment was easier to do.
Now I feel like I’m being forced onto one by my mum, MS nurses and MS councillor but I have only had one relapse while being off DMD’s and that was back in October 2017 shortly after I stopped Tec.
So if my ms is stable why is it so important for me to be on medication?
I’m quite aware I have just had a bit of a rant but any advice or info is greatly appreciated.