Good morning everyone. I am probably just about to start on Tysabri. Seeing my MS Nurse next week to finalise. I’m just after any advice you could give me. What do I need to do before an infusion, how will I feel afterwards, can I drive straight after the infusion… Thank you all.
Hi, I have been on Tysabri for just over 3 years. I hope I never have to come off it as it is doing the job for me. It has made me stable and I haven’t had a relapse. A lot of people drive after having the infusion. I don’t as I suffer with fatigue. I am always tired the day after my infusion. I try to drink plenty water while having my infusion as this stops me getting a headache. I look forward to my infusion as it’s just like going for a coffee morning. You get to make new friends who can help you manage the ms symptoms etc. I assume you haven’t been tested for JC virus ? I tested positive but the risk of PML was low. Now I have a blood test every 6 months to check the level and a quick MRI scan every 3 months. So we are well looked after. Hope this helps.
There’s a friendly and active UK Tysabri users’ Facebook group. I would suggest you look it up and ask to join.
Taking your questions in order (purely from my personal experience - I have no technical expertise):
(1) Drink plenty of water in the preceding 24 hours. If you arrive well hydrated, well nourished and not too cold, it can help the nurse to get the cannula in easily.
(2) Probably fine and pleased to have started a really good and effective treatment. Maybe a bit tired and inclined to mild headache, but part of that will be the excitement of doing something new. I would suggest planning on taking it easy for the rest of the day after your first infusion.
(3) Yes. They’ll probably want to monitor you for an hour after the infusion to check you’re doing OK, but after that you should be good to go. I suggest checking the local procedure with your MS nurse so you know what to expect.
Thank you both for your helpful replies. You both sound so positive too, which is great. I have been JC tested and was negative. I will take heed of your advice. Thank you again. All the best.
You are welcome. This month is my eighth anniversary of starting Tysabri, and it has been a wonder drug for me. My very active RRMS had been on the rampage for a couple of damaging years (Avonex had stopped working for me) but Tysabri has kept the lid firmly on it ever since, fingers crossed.
I hope it suits you too.
Thank you again. I’ve seen my MS nurse and I start Tysabri in a couple of weeks. Bit anxious, but looking forward to getting started.