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.
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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 TeamDisabled RN with MS for 14 years
SPMS EDSS 7.5 Wheelchair (but a racing one)
Tysabri
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Originally posted by 22cyclist View PostCan you get PML with only 3 doses of Ty? Are you JCV-, then no.
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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 TeamDisabled RN with MS for 14 years
SPMS EDSS 7.5 Wheelchair (but a racing one)
Tysabri
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Originally posted by Dreams008 View PostOk, 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.Without hope there's nothing.
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