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I started copaxone last year due to more lesions. Now i started having weakness (unable to walk on my heels) 1 week ago with no improvement even after 3 days of the steroid infusion. I am positive for JCV and my doctor has suggested to start taking a different medication (tecfadera - pills or tysabri - infusion). I'm concerned about PML. I'm new to the whole MS concept and have never had any weakness until now. I'm scared!!
@A MyMSTeam Member
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After being on Copaxone in a wheelchair with 3 young kids and losing my eyesight. My options were possible jc virus or deteriorat and die. I had no quality of life.
After 3 years on tysabri I'm back to reading to my kids, going camping, hiking, biking.. living with MS as normal as possible. Sometimes the risk out weight the benefits. At leas for me!
I'm on Tecfidara. Idk if I'm JCV positive yet. I have some blood work coming up so hopefully im not JCV positive but it scares the hell out of me! Sorry I couldn't be more comforting but PML is a huge deal and I worry about it constantly. I will be starting Ocrevus soon so I'm looking forward to that. I'm hoping it will help me and if I'm not mistaken there's no PML side effect! Good luck to you :)
I felt the same way. So worried about PML, and as I talked to more people , i then realized that almost all have side effects and decided to start the med with regular bloodwork. eventually became comfortable.
Thank you for all your feed back. I will have to decide which medication I will have to take next (tysabri or tecfadera)
I don't mean to be ignorant but what is pml?
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