Good evening, I hope all are well. I was after four years dx on 5th nov with rrms, expected by me but affected me more than I thought it would and feel a bit panicked since. I have my first delivery of beteferon being delivered tomorrow and the nurse coming next week to show me how to inject (alt days). I made the mistake of looking on YouTube and setting up the auto injector looks so complicated, I am worried that I will not take it all in. I have been told I will get a DVD showing me how but am really worried about doing it, and about any side effects I might suffer? It all seems a little too much at the moment Would appreciate any comments please. Thank you very much, Orchid x
You’ve picked a good one there, I hope it works for you. I’ve been on Betaferon for 10 years. I have been offered Tysabri but chose to stay on it as it’s been so successful.
I had flu symptoms for the first few weeks but please don’t let that alarm you - it’s supposed to be for up to eight hours after the injection so if you inject at bed time and take paracetamol, you should be able to sleep through it. At first I took 2 before the injection mid afternoon, 2 four hours later then 2 more when I went to bed and I was fine the next day. No problems at all. Then after a few weeks I noticed I’d forgotten to take them and have never had any side effects since.
You might get a bit of a bruise at the injection site but they fade and it’s a small price to pay for reducing relapses. Never forget why you’re doing all this, it makes it worthwhile.
You can’t go wrong putting the injection together, it’s dead easy. Each one comes in its own box with everything you need to mix it and the Nurse will show you what to do. Really, don’t worry about that.
I was really looking forward to my first one because at the time there was very little out there for us and I felt that I was doing the very best to regain some control over my MS. I still feel that and would do the same again.
Wishing you the best of luck and if you need any help, give me a shout.
Hi val, Thank you for the positive feedback! When I was given the dx I did query going on medication as I have only had relapses every two years, but like the ms nurse said, you don’t know when the next one will be or how bad it will be and I have been lucky in them being relatively mild so far. And I feel that, at least by going on beteferon, I am doing something rather that nothing. Thank you again and hopefully I am worrying for nothing ;-s Orchid x
The Nurse is right - you’re giving yourself a fighting chance that future relapses will be less frequent and less severe and that can only be a good thing.
You’ll get round the injecting in no time.
Hi Orchid I’ve been on Rebif about 2 years. The Rebismart - auto injector device is really easy to use. It comes up with typed prompts on its window to tell you what to do next. You rotate injection sites - arms, legs. tummy and round the back - the MS nurse will guide you. It stings a little when injecting but nothing major. I am lucky no regular side effects. Do occasionally feel a little rough. It really is very very easy to use. Good luck Min xx