Starting Tysabri?!
So, a bit of a backstory on my situation.. I was diagnosed in November 2021 with RRMS. I received my diagnosis after having numbness and tingling in both arms and legs and suffering optic neuritis which pretty much completely took my vision in my left eye. Luckily I got my vision back and it’s just more blurred now but nothing my glasses can’t help! Since then I have been relatively lucky with my MS, I was fit, active and very able!
This was the case up until I gave birth in May this year. After giving birth I had a relapse and was basically left bed bound and not able to really do anything. This was the case for 5 months where I then seemed to make slight recovery and was a little more able to do things, still not a lot but better than it had been… this lasted for 2 weeks, and then I ended up back in hospital with another confirmed relapse. Now I’m back bed bound and unable to really do anything at all.
I had an MRI in October which confirmed new lesions on both my brain and spine. I then had another MRI done during my stay in hospital in November which again confirmed MORE new lesions in both brain and spine. Some of my old lesions had got smaller/no longer visible, however some had also grown.
I met with my neurologist who basically said we had to see about escalating my DMT to one of the higher efficiency ones, but this had to be taken to the board and my case was to be discussed and reviewed.
A couple days ago I received a phone call saying that my case was still being discussed but they were going to send a booklet in the post for me to look at the 5 possible DMTs I could receive just incase. So then I would have the info to make the choice if it was agreed that I was going onto higher DMTs.
Today, I’ve received a phone call saying that my case has been discussed and that it had been decided that I’m going on Tysabri.
I am now SO confused because I don’t know anyone who hasn’t had the choice of DMT and are told what they’re going on… has anybody else had this where they don’t get the choice and get told what you’re having? Any idea why this happens? The only choice I’ve been given is IV or injection. I don’t know anything about Tysabri so I didn’t even know what to say!
So basically my questions are:
1. Has anyone ever been told what DMT they are going on rather than given the option? And if so, do you know why you weren’t given the choice?
2. Who here is on Tysabri and how do you find it?
3. If you are on Tysabri, do you have the injection or IV? Is there a difference?
Thank you everyone!🧡
I have always been given a choice. Sometimes, I feel like too much has been left at my discretion. My doctor explains the factors that weigh in favor of his recommendation. But he always leaves it up to me. I was on Tysabri for 2 years, then stopped DMT altogether (for personal reasons). After 2 years without DMT I started to feel a bit worse so decided to go back on Tysabri. It has never given me any type of side effect. I receive it by IV each month. I understand that it is one of the stronger DMTs out there. I also did not find that it reduced my immune system to any notable degree. They must test you for the JVC virus to make sure that you aren’t prone to having a very severe brain reaction. But I have never tested + for that virus and so have continued on Tysabri. Also, I have not received any new lesions while on this treatment. I understand that MS can still be active even without lesions, but I am content to see no new lesions over time. I hope that have good results and get some relief soon!
Dear @hayleighjayne, it sounds like you were offered Tysabri due to the number of relapses in quick succession. I had something similar, and was diagnosed with "rapidly advancing relapsing remitting M.S." Tysabri is a very effective D.M.T. Touch wood, I've been on it for six years without further relapses. I have it administered intravenously, every six weeks. I am checked for P.M.L. every six months (which is standard, I believe). Because Tysabri is not a "B" cell depletor, the effect on one's immune system is nowhere near as drastic as other D.M.T'S, meaning that vaccinations are much more effective. I wouldn't give up Tysabri for the world. In my opinion, it is the best, and most effective, for me. Your doctors obviously think the same for you. They do tend to know what they are talking about. Good luck, and best wishes, Jon