[jprinz99]

FYI- found out my assistance from PAN Foundation (grant for Tec copays) is good for one year total - so I am good until it runs out or expires. Some programs go Jan- Dec and some programs run for a specific amount of time. Good to know.

[Kitty]

Originally Posted by jprinz99

FYI- found out my assistance from PAN Foundation (grant for Tec copays) is good for one year total - so I am good until it runs out or expires. Some programs go Jan- Dec and some programs run for a specific amount of time. Good to know.

That's the patient assistance group I'm with, too!

[Kitty]

I had blood work last week to check for my JC virus status so I can possibly start taking Tysabri.

Neuro's nurse just called to tell me I tested positive for it.

Now, I have to decide whether or not to take the risk of taking Ty for 2 years and hoping I don't get PML. I know it's unlikely as I'd have regular blood work done to catch it but that's only every 6 months. I'd feel better if it were every month!!

I'm not sure what I'm going to do. It's a scary decision to have to make but nothing with MS is ever easy is it?

What would you do in this situation?

[barb02]

Kelly, I can't really answer that question since I had such bad experiences with tysabri. I think if my symptoms were not stable I would probably try something. Maybe your neurologist would agree to quarterly blood work.

[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.