PML worry...please help

[Dreams008]

Ok, this is going to sound very hyperchondriac, but I had three Tysabri infusions. My doctor put me on Solumedrol during the end of my third for 5 days. I then stopped taking Tysabri on 3.29.2013, which my next infusion was supposed to be 4.26.2013, but seeing as my doctor wanted to switch me to Tecfidera, I did not have the infusion. I started the Tecfidera on 5.1.2013. Within two weeks of starting the Tecfidera, my legs are the weakest they've ever been, I feel as though I can barely walk, and my hand is also shot. I just feel "unwell". My doctor is calling in Acthar Gel for me to try that as it seems the steroids didn't do a thing. Could you get PML with only three Tysabri infusions? Or does it sound like I'm having a relapse? I'm worried.

[22cyclist]

Can you get PML with only 3 doses of Ty? Are you JCV-, then no. If you are JCV positive, then it is possible, but still unlikely. You are most likely going through a tysabri washout that is why you feel so badly. This drug (Ty) it is a powerful drug that can give you a rebound effect when you stop cold turkey. Even after three doses. Talk to your neurologist about it.

I hope you feel better soon!

Take care
Lisa
Moderation Team

[fishead]

Dreams,

I used to be on Ty and a few times after my infusions, my legs would weaken. Please do not torture yourself thinking it is PML. I agree with 22, talk to your Neuro.

[Dreams008]

I contacted my neurologist and she ordered Acthar Gel. I switched right from Tysabri to Tecfidera, so can you still have a rebound if you go from one drug to another?

[MSer102]

Can you get PML with only 3 doses of Ty? Are you JCV-, then no.

That answer isn't absolutely positively no because there's no way to no absolutely if someone is JCV negative. The test has a false negative rate of almost 3%. If someone is immunosuppressed enough after only 3 doses of Tysabri and their JCV test was a false negative it IS possible for someone to develop PML. But it really isn't likely especially if the person hasn't used immunosuppressants before. Biogen says that the risk of developing PML within the first 2 years if there wasn't immunosuppressants used before is less than 1/1000. That's not absolutely no but not very likely. Or put the other way its not very likely but the risk isn't absolutely zero either.

[22cyclist]

If they thought you had PML, they would have already done an MRI. It is most likely a rebound effect from coming off the Ty, these are well documented even if you are switching to a new medication. They usually give IVSM or the gel whichever has worked in the past for you to get you through the rebound. It is SO unlikely that you have PML that they are not even concerned about it. You should not worry at this point either. You know the questions they ask us before every infusion? If you start noticing a problem with your thinking, etc. Call the neuro back and discuss this with them.

You will get through this, hopefully feeling better sooner or later, but look at the Tec boards and the Ty boards and see how many others are going through the same thing.

Take care
Lisa
Moderation Team

[ms man]

Ok, this is going to sound very hyperchondriac, but I had three Tysabri infusions. My doctor put me on Solumedrol during the end of my third for 5 days. I then stopped taking Tysabri on 3.29.2013, which my next infusion was supposed to be 4.26.2013, but seeing as my doctor wanted to switch me to Tecfidera, I did not have the infusion. I started the Tecfidera on 5.1.2013. Within two weeks of starting the Tecfidera, my legs are the weakest they've ever been, I feel as though I can barely walk, and my hand is also shot. I just feel "unwell". My doctor is calling in Acthar Gel for me to try that as it seems the steroids didn't do a thing. Could you get PML with only three Tysabri infusions? Or does it sound like I'm having a relapse? I'm worried.

3 infusions and thinking of PML? I've had 60 infusions and I've been thinking of PML now.If Ty is working for you and you've only had 3 infusions continue Ty.Your Doc is where you should get your info from.