Yesterday was very emotional and mentally tough to process.
I went in for my regular Tysabri infusion and Dr visit. I had some things I wanted to ask him about since my last visit with my MS specialist. You know, the visit where she suggested to shake things up by changing me from Tysabri to Lemtrada? Well, if you don’t remember, it’s in my last post. Take a minute to read that one to get caught up. Lol
First, there was the change in how often I receive my infusions from every 6wks back to every 4 since Tysabri seems to be losing it effectiveness that I needed to inform him about. Right out of the box, he drops a bomb on me. Apparently my JC virus number or titer (the number that I’m not exactly sure how to explain it other than the higher it is the worse it is) is a little too high for him to be comfortable with making the change that she wants. Basically my risk of PML (the very bad brain disease) is up. I get the impression that he feels it is the time to stop Tysabri. But ultimately he leaves the decision up to me and we end up following my specialists recommendation since it is only until I go back to see her in June.
Now, if you have also read my post titled My Thoughts Concerning JC Virus and Tysabri, you know what I have thought for almost 5 years of being on Tysabri. It has been a life saver for me. To go from not walking well and not even being able to drive myself anywhere to being able to function with very little to no problems whatsoever, in my opinion, is a big deal. You can also see my reluctance to consider changing to another medication with a whole new set of risks involved. I guess it could be classified as fear. It’s the great unknown. As well as a fear of change (which isn’t really a good thing to have when dealing with MS since it can change in any number of ways from day to day). But I suppose that if its not doing its job as well as it was, it is time to make a change.
I also asked him what he knew of Lemtrada since it is an infused medication and this was an infusion center. Surprisingly enough, he had heard of it but he didn’t know much about it and they don’t infuse it there at this location. Needless to say, that was pretty much a dead end in my quest to inform myself as much as possible about Lemtrada before having to give the specialist a yes or no answer about making the change. He did impress me though and got the name of Lemtrada and promised to educate himself about it before I come back to see him in June.
After I finished visiting with the Dr., I spent the next little while texting my wife about everything discussed. Since I wasn’t very clear on what the higher JC Virus number meant, that sent Sherlock (AKA- my wife) into high gear. Google and her get along very well. Haha. In all of our discussions about Lemtrada, she still wasn’t sold on it. Too many unanswered questions and not many places or people around here to turn to to find the answers. I have been searching the Internet for info about it. Joined a Facebook group of people who were either in the process of getting it started or had already taken the first round and going through the aftermath. All of it was just leading to more questions. But, somehow in all of her searching today, she came to a peace about making the change. I’m not sure if it was the added risk of staying on Tysabri or what she found out about Lemtrada or a combination of both that did it but she is good with it now.
I, on the other hand, was still on the fence. From what I had read, Lemtrada stops the progression of MS in its tracks by completely rebooting your immune system which, in a way, reprograms it to not attack the nerves in your body. If your immune system doesn’t attack the nerves, then it can’t cause disabilities. Part of me says that if I can stop progression where I am now, let’s do it. I am still able to work, play with my kids, and have a pretty normal life.
Then there’s the other part of me with questions. Such as: with my immune system being completely wiped out, how would that affect me since I have 2 young children at home. A 2 year old and an 8 year old in public school. Both of them bringing home all sorts of germs with them. Also there is the question of my ability to work and provide for my family during all this since I have also heard that the recovery process can be painful and makes it to where you have zero energy. It’s just scary the whole way around, in my head.
That was some of what was swimming around in my head while getting my infusion today. I was able to get a little sleep during all of that though which was nice. Once I was finished, I ran to my wife’s office to talk with her a little about everything. We were talking and I guess the weight of everything that was presented to me today just came crashing down on me. I broke down. I couldn’t help it. I couldn’t stop it. It just happened.
This is where I need to give my wife the praise that she deserves and I fear that I may not give her enough. She is amazing. She took me into one of the spare offices and just let me have my moment and then she sat there and we discussed everything from beginning to end. I’ll save you all of that talk but in the end, I am reminded that I have the best coach, partner, cheerleader, and the strongest supporter I could ever ask for. She reminded me that “We” can handle this. Which is just what I needed to hear at that time. I could never thank her enough for everything she does and is for me.
The end results of today is that we decided that maybe we don’t need to wait until June to visit with the specialist about Lemtrada. Why wait and expose myself more to the risk associated with continuing on Tysabri? So I am going to call later today to make an appointment with my specialist in Dallas to talk things over with her sometime next month and probably get the ball rolling with Lemtrada (after getting some questions answered, of course).
My wife is right. WE can do this. WE did this before when faced with the decision of going on Tysabri and WE will face this next chapter hand in hand.
I will keep you updated on the whole process as things happen. Thanks for taking the time to read this very long post.