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.
hi steph i dread the day when tecfidera stops working for me, however i had a very bad infection a while ago which made me go doolally and i kept forgetting to take my tec. got appointment with ms nurse coming up, so will confess all to her and hopefully get some reassurance and advice. basically a DMD is like an insurance policy. you pay out £xxx a month and when your house burns down you get money to have it rebuilt. what if i don’t have a fire and have paid out all that money…consider yourself lucky that your house didn’t burn down…if i was lucky i wouldn’t have a fire anyway… now replace the fire with ms and the insurance with DMD. it is YOUR choice to take any medication. research your options and although every man and his dog tries to advise you, you can choose whose advice to take. very much a risk analysis situation wish you the very best in making your decision. carole x
Steph, Oh wow, this MS stuff and it’s management really does play with your brain - doesn’t it? Don’t feel pressured, it is YOUR decision. You have to feel happy with whatever way you choose to go. Regarding your MS being stable - that is good and I guess this is what they want to help you stay. I feel in a similar boat, having had MS for 20 years - I have now been offered DMDs for the first time. Don’t know what to do either. Good luck Michelle x
I too believe that a DMD is like an insurance policy. Your MS may be quiescent right now, but it only takes one major relapse to rob you of your mobility. As I know to my cost.
I completely understand your reluctance to take a DMD though. It’s very much a cost/benefit analysis. If the cost (ie the side effects) are too great, then it is reasonable to avoid DMDs. And it sounds like you really did have an awful time with Tecfidera. But it might be worthwhile investigating other DMDs in case there’s something that will work for you and not give you such horrible side effects.
For example, would you qualify for Ocrevus? It looks like an excellent drug and one which doesn’t have a terrible list of side effects. Those it does have are minimised by the fact that dose one is a half dose and bloods are taken before dose two. Thereafter, it’s a 6 monthly drug.
There’s no harm in just leaving your options open, find out what you could take and then you can make an informed decision about whether to take a DMD or not.
Ultimately, it is your decision, as the other posters have said, only you have to live with your MS and only you have to suffer the side effects. Listening to other views is important, but make sure whichever decisions you make, they are yours.