Hi all
lived with ms for about 8 years with ms 5 years diagnosed my consultant thinks I should start treatment my ms has got worsened the last year he couldn’t say if I had treatment it would be any better or worse if I start treatment be looking at avonex any advice
thanks
craig
Hello Craig,
What your neurologist appears to be saying is that a disease modifying drug (DMD) won’t make any difference to your current symptoms. What a DMD aims to do is reduce the number and severity of relapses in the future. Therefore hopefully meaning that you don’t become further disabled by having relapses.
What made you choose Avonex? Or was it chosen for you? The reason I’m asking is that it’s an old drug. A beta interferon with an expected relapse reduction rate of about 30%. It’s given as an intramuscular injection (ie a bigger needle into the muscle) once a week. We now have a drug called Plegridy that’s the same type of beta interferon (interferon 1a), but is a fortnightly subcutaneous injection (ie, a smaller needle going just under the skin). If you want to take beta interferon 1a, Plegridy is an easier injection and being fortnightly, is easier to fit into your life.
Equally, usually people are also offered Tecfidera as a first DMD option. This is a tablet that you take twice a day sandwiched between foods. It has a relapse reduction rate of about 50%, so would seem a better first option.
Clearly, it’s a personal choice, and one that I presume has been made together with your neurologist and/or MS nurse.
Hopefully it will be a good drug for you.
Sue
Hi Craig
As with all treatments it can affect people differently and I can only give you MY experience. I started Avonex within six months of being diagnosed (2005). As Sue has already said it is a intramuscular injection into the muscle (in my case thigh) once a week. I injected myself every week for four years. I used to dread it every week and never got used to it. It made me feel unwell for a day afterwards every week with bad flu like symptoms. This was pretty difficult because I was still working at the time. Also I still continued to have regular relapses. Having said that when I was diagnosed I had acute mobility problems and I never fully recovered. I have always thought from the beginning that I didn’t meet the criteria for a DMD. Please don’t let my experience put you off. This was 2005 and I would like to think that there must be something better. Good luck in whatever you decide to do. No DMD’s are guaranteed to prevent relapses.
Anne
Hi Craig, I started on Avonex 8 weeks ago. I chose it because I had a big skin reaction to the flu jab so my nurse thought I may suffer with under skin injections. I was offered Tecfidera because of its effectiveness but similarly I didn’t fancy the side effects as I have a hiatus hernia. Overall, I am finding that the Avonex injections are going better than I anticipated. The first few weeks were harder, side effect wise, but I mostly sleep through them now. I also felt less fatigue initially. Good luck if you do start on them. I’m sure you’ll do fine.