I've been on Avonex almost two years, pretty much right after my MS diagnosis. It had been going well, but over the last few months, I just don't want to do it anymore. My fatigue has only continued to get worse since I started it, but I'm not sure if it's the Avonex or not. For a few months now, I've been getting leg pain that will randomly come on and last for a few days each time. Sometimes it's so bad that it affects my walking and really hurts to get up as well.
I talked to the PA (since it's not like I even have a neuro right now
) about quitting, but he won't have it. He says I'm doing so great on it that it would be stupid to quit (probably my words, but it's basically what he meant). I disagree. I'm sick of pain and the horrible fatigue. I've seen some of what other people said about being on interferons and I can't help but wonder if my whole bad attitude and not caring about anything anymore can be attributed to the Avonex. Last time I checked, depression is a very good reason to get off it, and even though I'm not diagnosed, I think I've got it bad (I'm currently working with my PCP on meds to help fix things).
Most of my disease course has been physical (makes sense, I've got a ton of spinal lesions and only two brain lesions that have shrunk since starting Avonex), and because I haven't had new physical symptoms indicating a flare, he says I'm stable. That is why he says I'm doing so great. My mood and energy have severely plummeted, and I feel like I'm losing my mind. I forget everything! It's bad enough that the people around me notice it happening all the time, so it's definitely a huge difference. I've also been getting daily headaches that can sometimes get bad. I don't know if it's related, but the days the shots are more painful, I seem to get worse headaches, but regardless of shot day or not, I know I will get a headache at some point in the day. This makes me think that I'm not as stable as he says I am.
I've tried discussing this and since he wouldn't listen, I'm done. I really just want to quit and I'll bring it up at my next appt in 2-3 months. I really want to see if I end up feeling better getting this poison out of my system. Unlike the "professional," I don't think Avonex has been some miracle drug for me. If it means I'm going to be miserable every single day of my life, then I don't want it. I almost skipped my last dose, but ended up taking it a day late. I really want to pass on the next one. Is this crazy? Or could it end up being the smartest decision I've come up with since this monster took over my life?
I talked to the PA (since it's not like I even have a neuro right now
) about quitting, but he won't have it. He says I'm doing so great on it that it would be stupid to quit (probably my words, but it's basically what he meant). I disagree. I'm sick of pain and the horrible fatigue. I've seen some of what other people said about being on interferons and I can't help but wonder if my whole bad attitude and not caring about anything anymore can be attributed to the Avonex. Last time I checked, depression is a very good reason to get off it, and even though I'm not diagnosed, I think I've got it bad (I'm currently working with my PCP on meds to help fix things).Most of my disease course has been physical (makes sense, I've got a ton of spinal lesions and only two brain lesions that have shrunk since starting Avonex), and because I haven't had new physical symptoms indicating a flare, he says I'm stable. That is why he says I'm doing so great. My mood and energy have severely plummeted, and I feel like I'm losing my mind. I forget everything! It's bad enough that the people around me notice it happening all the time, so it's definitely a huge difference. I've also been getting daily headaches that can sometimes get bad. I don't know if it's related, but the days the shots are more painful, I seem to get worse headaches, but regardless of shot day or not, I know I will get a headache at some point in the day. This makes me think that I'm not as stable as he says I am.
I've tried discussing this and since he wouldn't listen, I'm done. I really just want to quit and I'll bring it up at my next appt in 2-3 months. I really want to see if I end up feeling better getting this poison out of my system. Unlike the "professional," I don't think Avonex has been some miracle drug for me. If it means I'm going to be miserable every single day of my life, then I don't want it. I almost skipped my last dose, but ended up taking it a day late. I really want to pass on the next one. Is this crazy? Or could it end up being the smartest decision I've come up with since this monster took over my life?
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