Well, it’s the morning of day 5 of Lemtrada. Currently I have very low energy and strength. Just walking for a few minutes feels exhausting. I guess I pretty much expected all of this but it is different once you are actually experiencing it first hand. I do have a great support system of friends and family that have been trying to help me through the week with messages, food, and companionship. Of course you can’t overlook the MS therapy husky dog team. (I just like dog pictures. 🙂 )
Phoenix giving my hand a lick massage. The blue tape is covering my IV that was left in overnight.
For those of you who aren’t very familiar with Lemtrada you can check it out more by clicking here. It’s a newer treatment for MS in the US which consists of a session of five infusions in one week then a year later you go back for a session of three infusions. The doctor keeps getting updates on your health and MS progression over the years and if at year five you are the same or even better you don’t need another infusion treatment. From what I have learned over this past year it is definitely one of the most promising treatments for MS n the US. It does come with some scary possible side effects but after this past year or two I feel I have reached the the point I feel it is worth the risks. I want to be running again. I want to feel like me again.
Well, the morning drugs are starting to kick in and will knock me out for my morning nap so I will try to post more this weekend.
I have decided to change the main focus on my blog from just running with MS to more of just my MS life but still covering the active side of me. Things have been rough with the MS the past few months so running has pretty much stopped entirely. I have been jumping on my bike trainer when I can but having a lot of issues with my left side which gets inflamed with a lot of exercise most days. Some days exercise helps but that is rare. I am hoping this slight change in focus will get me back on here a little more.
I have switched things up with my main MS treatment as well. When I was first diagnosed with MS I started on Copaxone but it didn’t help. I moved on to Tysabri, Rituxan and finally Tecfidera. Tecfidera has been going well for the most part except for the past 6-12 months. This year my doctor gave me the option of Lemtrada. I thought Lemtrada over for about 5-6 months and decided to give it a try. It sounded like my best option to get things under control. Yesterday I started my first day of Lemtrada. It appears I have been lucky so far with little, minor side effects. I have had some minor headaches off and on. My appetite can change from being hungry to being a little queasy quickly. My most noticeable side effect has been from the steroids. I have only sleep about three hours in the past 36 hours. Its not unusual for me to have a night when I only sleep five or six hours but three is pushing it for me especially when my body is getting hit with a lot of different drugs. I will try to do more updates as the week goes on. After the first two days I expect I will just become more tired and achy as the week goes on. Here’s hoping that is all.