Today I had my first Tysabri infusion. It all went very smoothly. I was most nervous about them getting the cannula in but the nurse was obviously a pro, even that was fine.
The first and second infusion are the ones that carry the risk of an allergic reaction, so I was also a little bit nervous about that, but I knew that if anything did happen, it'd be fine because I was in a hospital with two nurses (which was a nurse to patient ratio of 2:1!)
The chair was really comfortable, which was the other thing I was worried about, imagining it being like sitting in a waiting room for 2hours, but instead it was a proper recliner kind of lazee boy style chair. Although the recline didn't work because they had no place to plug it in, but that didn't matter!
Once the cannula was in, the infusion started to go in, it felt a tiny bit cold but nothing more than I would expect from any kind of fluid going in to a vein. The MS nurse came down for a chat, and stayed for the whole infusion, hence the 2 nurses, so that was nice and reassuring.
I got a slightly odd taste in my mouth after about half an hour, nothing drastic no where near as strong as with steroids although a similar metallic taste. Around the same time I also suddenly felt really tired and like some brain fog had descended. I sent the boyfriend off to get some sweets and shut my eyes for a bit. He came back with a paper on which I could only get one clue on the crossword (it's the one I often do with not much problem, certainly better than one clue!)
I know a lot of people have described feeling tired either during or after the infusion and this is often put down to the busyness of the day and having travelled to the hospital etc. However I really don't feel that was to blame in my case, it was quite a strong level of tiredness and going to the hospital isn't exactly a huge journey as I'm lucky enough to live locally to it. I've done more than sit in a car for 10minutes and then in a chair for 30minutes over recent weeks and not felt anywhere near as tired. I'd had a good nights sleep and had a quiet weekend, kept hydrated etc etc, and generally tried to make sure I was in the best health possible ready for today. Maybe it was the relief coming out at having been a bit nervous, who knows, either way, I was tired and my brain wouldn't think.
The infusion took an hour altogether, with an hour to wait after to check for any allergic reactions. They said that after the second infusion I won't have to wait that hour if I don't want. The did 15minute obs (just blood pressure and temperature). My blood pressure went down each time they took it over the the two hours, I guess I must have been chilling out the longer I was there in the reclining comfy chair, sipping nice chilled water from the machine.
When we got home, I really just had to go to bed. I didn't feel ill, just really tired like it was bed time. I had weird sleep to start with sort of in and out and more just laying there not moving, I didn't even want to turn over and put the radio on though which is most unusual for me. I just felt I wanted to lay in the dark and quiet and just be for a while. Eventually I did drift off and the boyfriend woke me up for some tea after about an hour and a half. I still felt pretty pants, my face felt quite flushed and my hands and feet were all cold and clammy. That only last about an hour though and then I felt right as rain. Or, well, as right as rain as I ever do!
I am hopeful about the future, just got to get the second infusion over and I'm on the home straight. The nurse said that it is meant to reduce relapse rates by 70-80%, which is the best of any DMD (out of interferons, copaxone and fingolimod). So I am very happy to be having this treatment, and to be JC negative. The thought of no relapses, or even just one a year, just seems too good to be true, but I am more than ready for some good luck and definitely up for some reduction in relapse action! I am just getting to the point where I started feeling good again after the relapse in January, (apart from a cold at the end of last week which really knocked me for six, but that is mostly gone now) and usually I only feel that way for a couple of weeks before another relapse hits, the thought that this feeling could last and dare I say it even get better than this, is really quite an exciting prospect.
Tentatively excited I would say is how I feel mentally, and physically exactly the same as before I had it, which at this point has got to be a good thing.
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