@hkittypink

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hkittypink

Thinking of just stopping Betaferon

I've been taking Betaferon for over 4 years now and to tell you the truth I'm sick and tired of the way it rules my life! I have no side effects apart from bruising, but am just fed up of the injections which I hate doing and don't particularly want to go onto another drug. I have MS, it will get worst, just don't feel like fighting it any more. I'm in good(ish) health right now, no relapses for over 5 years and feel quite well in myself. The injections just remind me that I am ill. Am I being irrational or should I follow my heart?

Stumbler

@Stumbler

I can understand your thoughts behind this. But, I'd consult with your Neuro team, before making any decision. So, you've been relapse-free for five years and you expect to get worse. It doesn't have to get worse, but has it got worse over the last 5 years? I'm just wondering whether you would now be considered Secondary Progressive. If so, there may not be much reason to stay on the DMDs.....

hkittypink

@hkittypink

Hi Stumbler, I've not got any worse over the past 5 years, just symptamatic I suppose. I'm just fed up of taking a drug when I don't even seem to have relapses that often even before I started it. I'm just tired of taking a stupid injection when it hasn't got much of a benefit for me. My relapses weren't much to write home about anyway. Thanks for replying.

Caterpillar

@Caterpillar

@hkittypink I stopped interferons and regret it now - I was stable with no signs of progression on MRI. But I got tired of injections and of SE ( influenza-like symptoms all the time, low moods, painful bumps where the needle has been etc) I know it's difficult, but try to talk to your neuro - there are more alternatives to interferons now, some tablets. You probably need a new MRI, though, if it is a long time since you had your last MRI. MS progresses quietly and only 1 in 10-20 lesions seen on MRI gives a clinical relapse.

hkittypink

@hkittypink

Thanks, I last had an MRI about 5 years ago, never got the results of that though so doubt I'll get another one. I have a lot to think about I suppose.

Caterpillar

@Caterpillar

Yeah, thinking it over is not a bad thing :-). But bear in mind that the MonSter can return, and it is not fun at all when it comes back. If you are sick of needles ( needle fatigue, I know it well) try to talk to your neuro, you can ask for info about your last MRI and maybe get a new one before you decide what to do next. I was reading this paper yesterday: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1736487/ It is a few years old, but what it basically concludes with is : even the so called "benign MS" at some point is likely to enter a phase of rapid progression :-(

marydev

@marydev

Hi i am the same came off betaferon a month ago was tried of taking it and all it entailed I have since diagonse 4 yrs a go seem to have symptoms the whole time new ones comming and go i dont know weather to go back on it or not my neurologist says ihave relapse remitting but it disnt feel like it as its there the whole time any advise

hkittypink

@hkittypink

Hi Mary, I finally stopped Betaferon about 3 months ago and started taking Plegridy instead. It is still Beta-Interferon, but is only injected once fortnightly. I've had no side effects apart from bruising, but it's such a relief to just do it every 2 weeks. No mixing either - you just pop it in the fridge! Remember, a DMD is not meant to improve symptoms, just reduce relapses. It feels like a timebomb to me and Plegridy has been proven to be more effective than Betaferon. I hope the above helps x