[Kitty]

I thought about that, too, Barb, but I have so many unanswered questions still. My family has a history of brain related disorders. My mother passed away from Alzheimer's. My sister had early-onset Alzheimer's and passed away from that, too. Two of my Mom's sisters had Alzheimer's and one had brain cancer. I'm just hesitant to add another risk factor to my already diagnosed MS!

While I was researching PML I found two articles (both dated 2015) about a PML case with Gilenya and Tecfidera! I had no idea PML was a risk factor with those drugs. I was on Tecfidera until I had that awful allergic reaction. Scary stuff!

I think for the time being I ought to just go it alone...........

[barb02]

It's a hard decision. I knew that the FDA has added a PML warning for tecfidera. Maybe your neuro would consider monthly steroid infusions.

I haven't even decided if I am even going to see a neuro this fall for my yearly appointment. I didn't really like the one I saw last year too well. He will just be annoyed that I canceled the sleep study he wanted me to do. I really don't want to have a MRI, and my MS has been stable. So I think I may avoid it.

[Kitty]

I've discussed the pros and cons of Tysabri with my family (both boys and DIL) and they are concerned about the risk of PML.....especially since I am JCV positive.

I found an article that seemed pretty neutral but gave the hard facts about PML and the risk factors for JCV positive patients. It was a little scary to read I have to admit but I wanted them to know the facts.

They (well my boys at least) have already been through enough with the loss of family members and I don't feel I can risk putting them through another stressful situation for 2 years while I roll the dice with Ty. So it's a no-go for me.

While researching other MS drugs I found that many of the newer oral drugs also carry the PML risk. I was shocked! I remember specifically asking my Neuro if Tecfidera carried a PML risk and he said no. Well, I found a case of someone contracting a non-fatal case of PML after taking Tec! What the what???

http://www.medpagetoday.com/Neurolog...clerosis/52622.

Now not only do I have concerns about the safety of the MS meds but I question my Neuro's advice on everything now. He put me on Tec BEFORE testing me for the JC Virus!!! I think it's time to look for another Neuro. My confidence in him is gone now. His alternate drug to Ty was Gilenya. Well, looky what I found on it.....

http://www.fda.gov/Drugs/DrugSafety/ucm456919.htm.

I'm not sure where to turn or what to do.

[EddieF]

Kitty, i'm JC+ for a couple years & continue Tysabri BUT- JC level came back less then .5 which isn't very high. Lady in MS support group's level was over 3 & continues Ty. What's your level? My Dr said over 1 is risky, my call if it rises.

Tecfidera worked just about as good as Ty on me, I switched back to Ty after a few months of Tec cause MS was progressing but it's still progressing on Ty. At least I get to flirt with nurses & chat with chemo patients while getting Ty.

[Kitty]

I just left a message with the nurse at the Neuro's office to find out what my JC level was. Can't believe I didn't ask for that when they called the first time but I guess I didn't realize it had a specific number. I hope they'll call me back with it today. What is the highest it can be?

I'm still not going to take the risk. Maybe if it was just me to consider but I have to think about my family as well. I'm doing research on the different meds and it's looking like Betaseron might be the one. I was on it for a while years ago but didn't like the side effects. Maybe this time will be different.

[Kitty]

Eddie, my level was 1.40.......I'm going from memory so that might be off a little......but I know she said it was 1.something. She also said it was twice the "acceptable" limit.