i have seen a lot of literature and a lot of warnings about these two. I have been on avonex since January 2017. I hate the injections. My legs are permanently bruised. But I had a nasty relapse in October 2017 which left me with permanent weakness in my left leg. Neurologist and I agree it’s a mess fail so I was sent for the blood work and I have been exposed to the JC virus. I just wonder if anyone has some real dialogue about testing positive and taking the next levels of meds? The possibility of pml is very scary!
Hi, Tecfidera and Tysabri are both manufactured by Biogen. Unfortunately, both of those drugs, in time, will cause PML. But then, even if someone is PML positive, there is a range that is acceptable until it is necessary to change to another medication. At this time, I don't know what degrees of PML are acceptable until one has to switch. I just recently became PML positive, but MS neurologist said not to worry. There is an assortment of different MS medications, but they all carry different side effects. Like other MS issues, one has to do their research. Just be prepared with a list for your neurologist's next appointment, including your findings, as well as any questions you might have and don't forget to take notes.
I hope you get the personal responses you are looking for. If you are considering switching medications, I encourage you keep working with your neurologist to determine what medication may work best for you. You may also want to view our brochure, The Disease-Modifying Therapies for MS.
It provides information about the FDA approved medications and common side effects.
You can find additional information on our website:
National MS Society: Disease Modification
MS Navigator Stephanie
I am JCV+ and on Tecfidera (since July 2015). I know that the idea of PML is scary - I weighed that option when choosing a medicine as well. From what my neurologist and MS Specialist tell me (and the literature I have read), PML is a rare danger that can occur if a person's lymphocyte count drops too low, which is why my doctors order complete bloodwork every 6 months. I also have MRIs every 6 months. Luckily, my lymphocyte count has never dropped and remains in the normal range. I have not had any relapses, new or active lesions in the almost 3 years since I have been diagnosed.
There are other drugs that do not have this risk, but have other risks. You have to talk to your doctor and see what will be best for you and your current state of health. Best of luck to you!
Thank you so much! This has been so helpful! I wanted to know what reality looked like not the what if’s. This makes me feel so much better about the next step!
First I am JCV negative and on Tysabri. Honestly for me Avonex wasn't working and the time like 8 years ago Tysabri was the best and it didn't matter whether I was postive or negative. I was luckily negative. At one point I had a false postitive. I was very upset and worried. I called my nurse practitioner. She said to me that we would not change treatment at this point down the road we would but for now we would continue but they will monitor me closely. That's what they would do for you watch you carefully. If you have any symptoms they most likely would do a MRI just to make sure it isn't PML.
Second there are a lot of new medications. The newest one with no risk for PML is Ocrevus. Good luck Gabrielle
Thank you so much! I will look into that one as well. I see a lot of posts that are positive for techfidera it’s good to hear there are options.