@Jubli8

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Jubli8

Going off the drugs

After 30 years RRMS and 10 years Betaferon injections plus other drugs, I have stopped taking everything with only minor noticeable differences in symptoms. As drug companies dont do tests on people NOT taking their product I would like to hear what experiences other people who have stopped medication have had.

Stumbler

@Stumbler

Well, I started having "episodes" back in 1985. I was put on Betaferon in 2005 and stopped in 2010. I was considered SPMS at that time, so there's no medication for that! :? I do take a med for neuropathic pain, for what good it does.

Jubli8

@Jubli8

Thanks Stumbler, Good to hear from someone else who has stopped :)

f3ng5hu1

@f3ng5hu1

I stopped taking copaxone after a nasty experience which although was rare still almost killed me:- https://shift.ms/p/topic/one-shot-of-copaxone-that-nearly-killed-me/ So yeh i can understand anyone not wanting to take dmd's especially as theres no guarantee of any results and who ultimately can say for sure that they really do anything at all ms being so random. They will probably want me to try one of the other dmd's but personally I am not convinced, would rather wait for an absolute cure or just progress naturally (bit of an irony there).

chris

@chris

I can only speak from personal experience and do not advocate this course of action for anyone but my self. I was hospitalised in 2006 and diagnosed early 2007 though in hindsight I started having symptoms a good few years prior to this. After diagnosis I was prescribed all the usual drugs for dealing with symptoms Gabapentin, Amantadine Pregablin and so on too many to mention I'm sure you know them all, anyway I was feeling worse and worse I was progressing further into disability and worst of all I felt so I'll and depressed, I took the decision to stop my medication, with in weeks I began to feel better don't get me wrong I still have all the usual problems and my mobility is not good but I don't feel so terribly ill anymore. That was five years ago now I take a few pain killer's and something for my bowels.It's not for everyone but it works for me.

Jubli8

@Jubli8

Thanks for the response guys. Had a couple of problems last week - just dropping stuff and falling over, but its gone again for now. Put that together with hearing positives from others and I am feeling that I have made the right decision.

mammamoose

@mammamoose

I stopped all drugs too apart from Tramadol for pain relief I think it gets to the stage when you think is it worth it? i.e. I have some relief of my MS symptoms but, I have a lot of unpleasant side effects from the drugs. Do I actually feel better with all these additional drug related symptoms? If the answer is no as it was in my case then consider stopping or changing medication but don't stop taking it until you have spoken to your nurse/GP/neurologist.Remember you are in control and you do not have to take anything you don't want to.

jaimie

@jaimie

this is actually a big decision at the moment for me. I have decided to stop Avonex and all medication after a summer off it iv realised how much it has been disrupting my life since diagnosis. After a recent relapse i want to use up my well life with all the energy i have not with consuming drugs. i feel that all i can do is give it a try and see if i suffer from more relapses. when starting the drug only 1 and a half years ago fresh from diagnosis it seemed like my only hope to be well, yet now i feel that i may need to try the holistic approach more to see if my body actually needs the drugs. I need to know what the effects of MS is gonna be over time and also feel let down with some of the latest research findings of avonex. if im consuming my life with drugs surly its so i can have a better future? new findings have shown that interferon's have no long term advantage to the disease. This is so confusing.......