OK, so I have not been getting this blog going like I wanted to, it’s been tough while feeling like garbage. Now last year my parents bought me a ticket to Colorado so I could visit my friends but before I could use it my health started to decline so I had to cancel my trip at the time. I was able to save my ticket as credit for a new ticket and since it was about to expire I thought I would use it, after all, I felt stable enough to make the trip. I have been walking a little better without a cane and my vision was manageable. Well, aside from my fatigue and feeling like I could hardly “keep up” it was nice to be with friends. The weather was nice too, 50’s-60’s as a high. I did get some really bad food poisoning but all things considered, it was not as bad as it could have been.
Once I got back though it’s like my body just let go. It was holding on so I could fly back but when I got home I pretty much slept for 2 days. As I started getting out of bed and moving around it started to become clear I was flaring up; my vision is horrible, fatigue is worse, my balance has been on the edge of “I need a cane” and “I can probably do without one” and my cognition has been even worse. I always think, “wow, this is so much worse than usual, it can’t get worse” and then it does. So now I basically put myself back a couple months…
I got in to see my neurologist the other day and he ordered Acthar, yay! So hopefully, I will get that soon… He also ordered IVIG but I really have no desire to start that again as it always made me feel really weird… So I am not sure. I am also going to be starting what is basically Ampyra (helps walking in MS), this is compounded and is called 4-Aminopyridine and from what I understand is composed of the same active ingredient. Oh yeah, also, Nuvigil 250. I have been on 150 in the past and most the time it gave me a really bad headache and caused my heart to race so I stopped it but after trying Ritalin with no luck I decided, out of desperation, to just try Nuvigil again. Now I don’t get it but a lot of people say after Lemtrada whatever they were using for fatigue kind of stopped working. Still, I was a bit nervous so I started with half (125mg) and an hour and a half later, after not really feeling anything I took the other half. It’s been 4 hours and I don’t feel anything close to what I felt before. In fact, I am not sure if it’s giving me energy or if it’s just in my head. Either way, I don’t feel all “hopped up” and full of energy (no side effects either), I just am not nodding off to sleep while I sit. So we will see in the next few days.
We also talked a little about starting Rituxan; another chemo agent that technically has not been FDA approved for use in Multiple Sclerosis but has been used as such for a while now. This would be to aid Lemtrada as Rituxan targets B cells and Lemtrada targets B and T cells but after 3 months or so the B-cell count rises so this would help keep everything down. At least that is what I understand as of now.
So for now, I am just waiting to get my Acthar, which will hopefully help calm this flare up since Solu-Medrol really doesn’t seem to help anymore. As I find out more about what I will be doing as far as my treatment goes I will be sure to update here. Until then here are a few pictures from Colorado;