I was nearly certain this was coming, but that doesn’t make it any easier.
I spoke to my MS nurse on the phone and she confirmed that I have three new lesions in my brain. Two very new that are mostly healed (which makes sense), and a new, big one that is still enhancing. My neurologist is saying time for a medication change.
I did the legwork for this possibility months ago, with my loved ones and a stack of websites and papers. I know which meds do what and how and what my best options are for continuing my current quality of life (provided my body works well with them). I was not prepared for the nurse to start gently suggesting the idea of experimental studies at this point in time.
That comment set me on edge hard enough that I didn’t really listen to what else she had to say. I’m glad I had the ability to detach enough to make sure the next steps were in place — appointment with my neurologist at the beginning of August, requested an email attachment of non-experimental drug information, confirmed that I would accept a phone call from one of the study nurses — and then shut down for a while.
No one has mentioned the word “progressive” to me yet, nor have they been pushing for any of the IV medications. This tells me that it’s not as bad as it could have been. (I guess I’ll find out for sure in August). I’m still going to ask my neurologist if there’s any possibility of continuing on the Copaxone for a while longer. Sure, I’m having a flareup, but it’s doing exactly what it was designed to do — it was delayed (nearly 5 years since the last one!), it’s been a lot less intense (still marathon training??), and hopefully it will be shorter. I know it’s been 4 months already but my flareups are usually 6–9 months. And I have not lost one bit of motor function this time around. That’s pretty incredible to me.
There will be some merits to changing medications, especially if I can start the Aubagio, which is my next best option. (If she insists on another injection, Betaseron is next in line.) The shots have become harder to tolerate since losing a lot of weight, and after eleven years of daily injections, my skin could use a break. An oral medication is way easier to travel with. I will run a significant risk of GI upset and losing my hair on the Aubagio, but I’m not concerned about that. Compared to the side effects of other medications, these are the least intrusive to the life I would like to continue living as long as I can.
But I have no idea why I am doing so well after thirteen years of MS. I changed a lot of things at once in 2008. I rid my life of toxic relationships, I began running and taking care of my health, I developed positive coping strategies, I began eating really well and I changed my entire outlook on life. I also started taking my shots regularly and just flourished on them.
I think I’m this afraid to stop because I don’t know how much of my current level of functioning is because of the Copaxone, and how much can be attributed to positive life changes. I don’t want to remove any of the variables to try and find out.
In the meantime, I’m just getting through one day at a time. Still taking my shots, still focusing on running, still coping with the nerve pain in my hands as best I can. It’s definitely getting worse but still not bad enough that I can’t do my daily living activities. I’m just focusing on taking care of myself and getting more sleep until my neurologist appointment.
Then, I can work on Plan B.