Forum

Long Term Avonex

Hi All,

I've been on Avonex 11 years, it seems to suit me, flu like side effects nothing like they were when first starting. All was well until 15 months ago when I got an alopecia areata which is spreading to the point that a wig will probably be needed within a year!!!! I noticed I used to shed a lot of hair years ago but no bald patches. I'm 57 and am wondering if the Avonex is responsible or my hormones. My Neurologist believes I should take a break and probably stop Avonex as he doesn't think I need it, 11 years without a relapse, he said Avonex reduces the number of relapses, not, stop them altogether. I had MS 15 years without knowing then went to bed fine but woke up with my left size paralysed, that's when they diagnosed me. So I've had MS 26 years, still on my feet, left arm a bit useless but I manage. I'm scared of getting another massive relapse but am also wondering about the long term side effects of Avonex.

Grateful for any thoughts or knowledge of this.

 

Thanks

 

Sue

Hello Sue

I don't know about the hair thing but if it were me I'd fight to stay on the Avonex. No relapses to me suggests it's working, not that you don't need it. You need it as long as you're RRMS, which of course is always. Much like my Betaferon - I rarely relapse now but I'd be terrified to stop using it.

If you want to stay on it, point out to him about 'averages', as in reducing relapses by an average of a third. That is, anything between none and lots. You could just be on the lucky end of the statistics. 

Good luck with whatever you decide to do.

Val

Hi Sleeptalker,

 

I'm seeing a dermotologist nex Friday, I'm hoping he may be able to say if it's likely to be drug induced or hormones (I'm 57). I'm not expecting much but it's worth a go!

I do worry about the long term side effects of bering on Avonex so long, it's a very toxic drug, hence the need for regular blood tests. My skin and nails are also in VERY bad shape despite the amount of creaming I do. My Neurologist said that this far into MS, 26 years for me, I won't be at the relapse stage any longer, I presume he thinks I'm SPMS although I don't believe my symptoms support that theory.

I'm very nervous about stopping but equally nervous about continuing, my hair is also losing it's colour, existing hair adjacent to a bald patch has turned white, my hairdresser tells me that white hair is damaged hair. Something is going on, I hopre I can find out what!

Thanks to you and Val for your replies.

 

 

Sue