Forum

Betaferon users

Hi everyone

Was just wondering how people feel about Betaferon ,any advice would be greatly appreciated.

I am about to start on it and wondered how you found it ,not really looking forward to it but hey ho

love Debs xx

Hi Debs,

I have been on Rebif for some years and I have found this very useful for damping down the condition. I know that some poor people can get bad flu-like side effects but so far (touch wood) I haven’t noticed any at all. It has really done what it says on the can too; I have far fewer relapses and of those they are far less aggressive. There seem to be no down sides, but I was very surprised to read that regardless of whether a person takes the stuff or not, their condition will still be the same. This sounds very strange seeing as I seem to suffer far less. Good luck on your course and I hope this is as good for you as it is with me.

Moira

I’ve been on Betaferon for about 8 years and it works very well for me. It’s got my relapses down from every couple of months to less than one a year and even that is over quicker and I can get back to work sooner.

It’s injected every other day, under the skin and I use an Autoject so I don’t have to see the needle going in. I had flu symptoms for the first few weeks for a few hours after the injection but these were controlled with paracetamol so I only noticed if I was late taking them.

It’s delivered to my home address once every three months with a new sharps bin for getting rid of the needles. I’ve never had to pay a prescription charge,

I have an annual appointment with the neuro where they do blood tests to check liver function etc but there’s never been a problem. He has offered me Tysabri for the last two years but is happy for me to stay on Betaferon while it’s still working.

If there’s anything else, feel free to ask and good luck with it when you start.

Hi Debs…

I was diagnosed in April 2010 and I have been taking betaferon since 3rd Sept 2010. In the 1st few weeks my body was aching and the places i had injected felt really sore, I suffered from headaches and felt tired alot. This was controlled with paracetamol. I found it easiest to take my injection in the evening before bed, so i could sleep through any side effects. I find it extremely painful in the arm and leaves red marks for weeks after. I have been on this for over a year now and no longer have any flu like symtoms.

Since stating befaferon i had my first relaspe about 2 months ago, the biggest positive is that my relapse only lasted 3 weeks and it was very mild. In my opinion betaferon does exactly what the consultant says.

If i was given the option to change, i would like to try rebif as the auto-inject is slightly more user friendly according to a friend. With betaferon autoject the needle goes in and the liquid is then inserted the speed of either can not be controlled or changed; With rebif, although i have not tried it, the autoinject has options for you to choose how deep the needle is injected, speed of dose. It seems to be better. I will be going for my annual check-up in December and i am hoping to be able to begin rebif thereafter.

Hope this helps and i apologise it isnt all positive and i wish you well with it! :slight_smile:

Take care

Dee

xx

hi ive only ever been on betainterferon since dx jan 2006. just this passed year i have noticed relapses are more frequent and more aggresive. so i dont know why its stopped working for me. nuro wants to try me on tysabri. was very reluctant at first, but i’ve tested negative to the jv virus, so thats good, so probably be giving this a shot now. i’d rather be on betainteferon if im honest, BUT not working.

Ooh I was just coming on to post the same question. I am starting on Extavia next week, injecting three times a week. I am worried about side effects as well, but as Michael says there, you don’t know how it will affect you until you try it.

Hope it goes well for you! xx