The Before and After of a Tysabri Infusion
During my life with multiple sclerosis, I have tried numerous treatments. From Avonex, to Copaxone, to Avonex and Copaxone at the same time, and even just diet and exercise. However, no treatment has been quite the lifesaver that Tysabri has been. That said, my experience with Tysabri does come with some interesting experiences, notably right before and right after my infusion. I thought it’d be nice to talk about those experiences and see how many other people also encounter them.
As I said, I’ve tried a lot in my 16+ years with the disease. Treatments would seem like they worked for a while, and then suddenly, they didn’t. Everyone’s experience with MS treatments is different and I very much think it is an individual journey. So while Tysabri seems to be doing great things for me, that doesn’t necessarily mean it’s going to be great for you. I can’t stress enough that finding what works for you is an individual process that will involve trying different medications to find what works for you. For me, Tysabri was a game changer because it has, for the moment (fingers crossed, knock on wood, etc), stopped or dramatically slowed my transition into secondary-progressive MS.
First a little background on Tysabri if you aren’t familiar with it. It’s administered once a month via IV infusion. I head on over to my local infusion clinic located in a hospital and receive it over the course of an hour. Now, when many people think of Tysabri they think of the increased risk of a rare brain infection known as PML (progressive multifocal leukoencephalopathy). This untreatable infection can be fatal. It is certainly a risk and something everyone who takes Tysabri must think about. The chances of getting PML increase if you’ve been exposed to the John Cunningham (JC) Virus (which is for the most part symptomless and is actually very common in the general population). Tysabri patients are typically monitored every three months or so via bloodwork to see if we’ve contracted the JC Virus. The risk of PML is yet another individual journey that MSers must take. For some, it scares them away from Tysabri completely. For others, they get such a benefit from the drug that even if they are JC positive, they’ll continue to get Tysabri.
Now, what I really want to talk about is what happens to me before and after my infusion. The days, nearly the whole week, leading up to my infusion are very rough. A lot of my regular symptoms are slightly increased: intense burning pain in my legs, leg weakness, spasms, very bad fatigue, etc. The most troubling part though, is that my wife and I notice that I get a significant mood change during this time. I become increasingly depressed and irritable during this time. I have thoughts that I normally don’t have. I really don’t even feel or act like myself during these few days when I am due for an infusion. If for some reason, I have to push my infusion to a later date, the severity of these problems increases even more. Those days when it gets close to an infusion are extremely dark ones for me, to the point that, increased chance of PML or not, I wish I could get Tysabri every three weeks instead of four. I have an appointment to discuss this with my neurology team but I wanted to put it out there and see how many other folks have similar issues? I know that I’m not alone because a handful of other Tysabri patients have mentioned it to me, but I’m very interested to see how widespread it is.
Now as bad as those few days before my infusion seem, the exact opposite is true for the week or so after. Normally I’m knocked out on the day of the infusion. I pretty much go right to bed for the night as soon as I get home and it’s one of the few nights I don’t battle painsomnia. A day or two after that, I feel the best I ever feel. My head becomes clear, I remember more, I can walk and stand longer too. I still have issues, but overall I feel considerably better. That’ll last nearly a week at times (sometimes longer, sometimes shorter). It really is an incredible time for me and I wish it lasted longer. Again, I know others who experience this, but I wonder if it’s more widespread?
Overall, Tysabri has been a lifesaver for me. Without it, I would have already progressed a lot more than I have. It hasn’t reversed any of my issues, but it has certainly seemed to stop the disease in its tracks (at least temporarily). But as I mentioned before, we are all snowflakes with this disease, we are all different. I really would love to hear from others though, what are your experiences with Tysabri? Particularly leading up to and after an infusion – let’s hear it!