I did it – I quit it. The thing I’ve been dreaming about doing since I started “shooting up.” I quit shooting up. I’ve been injecting myself with Betaserone every other night for 5 years. It apparently served me well as my MS hasn’t progressed. I don’t have any new lesions. In fact, I have fewer (I did that with guided imagery, but more on that in another post). So why quit? And why now? Great questions – and I don’t know.
Seriously. I’ve wanted to stop the injections since I started them. Who enjoys shots? NO ONE. Particularly if you have to give it to yourself and there’s no light at the end of the tunnel in terms of when it will end. But – I did it – for 5 years. I even referred to it as my “liquid gold.” I had fantasies of going off of it, but I was so scared that something horrible, devastating and irreversible would happen if I did.
I shot up at night to try to sleep through as many of the side affects as possible. Occasionally, particularly in the beginning, I’d wake up shaking uncontrollably in the middle of the night after a shot. I’d be frozen. My husband would lay on me to try to stretch my body out straight because I’d be in such a tight ball my muscles would start cramping.
Most “days-after” I felt like shit. Those “flu-like symptoms” they talk about? Yeah, those. Body aches, pains, chills, cog fog, fatigue. Not good. Additionally, the “shot spots” were very painful. Not always. Not every spot. Not every time. But often enough that I had begun to feel like a pincushion. There was really only 1 position I could lay at night to be somewhat comfortable. If I rolled over, the “shot spots” on my arms would wake me up in pain. I had to give up shooting up in my legs last year because the knots were painful and longlasting. The same had become true recently of my arms. I was seriously getting down to the last few spots left.
I always envisioned the day that my doctor would tell me I didn’t have to do those damn shots anymore. In my mind it was a “red-letter day.” I thought there would be a big buildup, a count down until the last shot, maybe even a party to celebrate it. I went in to see my neurologist, told him I thought I was done and he said “okay.” What? Excuse me? I was counting on him to talk me out of it. Now I had a really big decision to make. To stop or not to stop. Just exactly how risk tolerant am I?
Turns out, I’m less risk-averse than I ever thought. And that fan-fare for my last shot? It never happened. There was really no premeditation to it. I simply couldn’t imagine doing it one more time. I shot up for the last time on December 27, 2012. It was a retrospective decision. When it came time to do it again on the 29th, I thought I’d skip a day. The next day – nah, maybe just one more day without it. Then the epiphany. I’m done.
My husband was pleased that I had stopped. He had seen the pain I had because of the medication. I started these shots a week after I was diagnosed. I didn’t know if my pain was simply because of the shots or if MS was kicking my ass too. He’s relieved to see – at least thus far – I’m doing really well. But – he couldn’t be a part of this decision. He started to voice his opinion not too long ago but I stopped him. “This has to be my decision,” I said. “If this doesn’t go well, and I end up worse off because of it, you can’t feel guilty and I can’t look at you like a cause. This has to be my decision – either way.”
So – the decision was made – at least for now. I’ll never say never, but I’ll say I’ll probably not go back on this decision. And, knock on wood, it’s going really well. Unfortunately, I went gluten free and dairy free at the same time that I quit the medicine, so I don’t have a definitive answer on whether or not I feel better because I’m off of medication. I’m going to reintroduce the gluten and the dairy separately to see if I have a reaction or not. But I have no plans to reintroduce the shots. It was a scary decision, but like most decisions, the toughest part was actually making the decision. Once I did, I feel good about it.
Many of you have expressed your desire to make a break from the shots as well. So – what are your thoughts? Do you have fantasies of going off of the drugs – at least getting away from injectables? Do you have a plan to do so? Would you never even consider making a change in your pharmaceutical regimen? Do you think people (like me) who do are taking silly chances? I’d love to hear your viewpoints on this matter. Please, leave a comment underneath this post so we can all hear the varying opinions of this community that help each of us to weigh our options.
**UPDATE: It’s been over a year now since I went off of the Betaserone shots. I haven’t felt this good since before I was diagnosed. I’m still staying away from dairy and gluten – but not religiously. I’ve added more exercise and I’ve lowered my stress levels. All of this seems to be doing me some good. I feel great and my MRI shows I’m holding steady. Can’t make a recommendation for anyone else – but it sure has been a great move for me. FUMS!!
Special thanks to www.FreeDigitalPhotos.net for allowing us to use this cool picture of yucky needles!!