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Hello Everyone,

I have been taking Avonex for 2.5 years. I started taking it very quickly after the diagnosis. My plan was to take it for 5 years, but I'm thinking about quitting at 3 years. The side effects are pretty tough, although they last only one day after the shot. I am also concerned about long term risks of taking Avonex or other DMDs. I would like to stop taking it and rely only on OMS and LDN. I know the decision is mine, but I would like to hear from people who were on Avonex and stopped taking it. How long did you take it? How are you feeling not taking it? Please share your experiences.

Thank you,
T.
Hi Tedi,
I was diagnosed in 1997 with RRMS. My symptoms had been double vision and mild weakness in one leg, which had resolved. At the time, Betaseron was the only treatment on the market and my neurologist told me about it but didn’t really recommend it. I then went overseas for a few years and came home and had a couple of kids. Throughout that period I had a few mild signs (odd tinglings and L’hermittes and heat-induced fatigue) but was basically well. In 2008 the double vision returned so I went back to see a neurologist who eventually started me on Avonex. Two years later I started OMS and started feeling better. Another two years on my husband went away for several weeks so I stopped avonex because I couldn’t cope with the kids on my own as well as the Avonex hangover. It was meant to be temporary but somehow I didn’t start again when my husband came home. Another year on, an MRI revealed a large new lesion which was not causing any symptoms. My neurologist recommended starting a new DMD but given I felt totally well, I declined and have had no more MRIs and continued to thrive. That was five years ago and I’m still happy with my decision.
Thank you for sharing your story, Lucy! I'm so glad you are doing well!
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