Good afternoon all,
Hope everyone is as well as can be
It may sound stupid but I cannot stop wondering to come of medicines because i feel better now.
I am on Tecfidera since last December, first 2 months on it was horrible but now I am feeling much better. I feel almost normal.
Over a year ago diagnosed and i have been on tecfidera only.
Any one managing ms without drugs? anyone feeling the same.
Some feedback would be very much appreciated
hi erida
is tecfidera the only med that you take?
you just reminded me to take mine (oops).
it’s a gamble because we just don’t know if they are doing us good.
if you come off it and then have a big relapse then you’d know it was doing good.
good luck with whatever you decide
carole x
We are all so used to the normal medicinal drug sequence - something like: get an infection, start a course of antibiotics, feel better, finish course of antibiotics, are cured, end of story.
DMDs are different, and you know that, but it can be a hard concept to hang on to - taking a drug to minimise future harm when you are feeling OK.
I think that, even after all these years, there is a little voice in my head that keeps trying to persuade me that I don’t have MS really, which is daft because I obviously do! It might be that you are still, secretly, trying to persuade yourself that your MS has gone away. But it hasn’t, and neither has mine. The best either of us can do is to give ourselves the best chance by taking a strong enough drug to keep the MS quiet, so it stays as small a part of our lives as it can be.
Good luck.
Alison
Mmmm, had this debate in my head more than once, I inject everyday as well as all the other drugs & I often think “I’ve had enough of this” but do I really want to risk the consequences? Truth is no, I don’t want to reverse whatever the drugs are doing for me, so I personally wouldn’t take the risk Tracey x
I’ve given up taking drugs for my arthritis for now . I got really fed up of side effects and blood tests because they didn’t even work. It’s a tough one , if it turns out I have Ms Id be more inclined to not take the drugs if I felt ok . My ex bf has chosen to be drug free. They are serious drugs , but it’s a serious disease . There isn’t really a right or wrong …difficult .
Best of luck
Erida, I suspect we all of us question our drug regime from time to time, and that’s a good thing.
I came off DMDs because of unpleasant side-effects, but have continued with Gabapentin for quite a long time now, which I take to relieve, or lessen, various symptoms like nerve pain, muscle stiffness and the hug. However, I often think about stopping, and for two reasons; the first is just to get away from routine pill popping, the second to get a measure of how much the drug is helping, or not, as the case may be. How can we know this without stopping for a while, or maybe reducing the dose?
I think that Alison, in post #3, puts the case for staying on DMDs rather well, if you can tolerate them, which it looks like you can.
I have, in the past, come off other treatments for nerve pain, almost always because of side-effects, and have found both my MS nurse and neuro to be understanding and helpful in the matter, usually offering an alternative.
I came off Copaxone a year ago (thank you Healthcare at Home), but would have come off last August when they changed my Dx to SPMS,
I started to keep a weekly log, but when this turned into “same old, same old” I gave it up after a few months.
Now I just have the Gabapentin for nerve pain (and I do not want to give that up).
Geoff