Regular 3 month neuro appt got pml stats

[lindaincolorado]

Yesterday I saw I saw Dr. Corboy's NP at the Rocky Mtn ms Center. I had been concerned about odds of pml after 4 years. I learned that the odds at 48-60 infusions is 1/800 if haven't had previous immunosuppressants . The highest odds, which I believe is between 2-3 years, is 1/500.

Since I have tested both neg and pos for the jcv I will be tested again (when I set up appt) not thru the trial. I, of course, am hoping for neg but, will stay on Tysabri as it has been so good to me, no matter what !

Dr Corboy has me now getting an MRI yearly. Since, so many on Ty at MSW are getting one every 3 or 6 mths I was wondering why. She explained to keep from the dye's possible harm to the kidneys he prefers yearly unless change in sx and then an MRI.

They still believe ms quiets down with age - I'm 63. Then she told me that once off Ty sx come back, age only relieves flares, I was not happy. Relief of my sx has given me QOL that I am thankful for and do not want to give up (better balance, energy, endurance)!

Just thought I would share

[REG53]

Hey Linda,

Thank you for the infor. I do hope you test neg. for the jcv test.

I have always been concerned about the dye for mri's. I won't be getting the dye on my 3mo. mri only 6 mos.

My neuro also believes with age (I'm am 60) only flares slow down but I could still progress.

[ru4cats]

But I was listening today to some recent videos by Dr. Vollmer and I heard him say many people over 60 no longer need to take a DMD. Did I hear wrong? He also said if you are jc- negative your risk of PML is one in 35000 and recommended a yearly blood test for jc, but if you remain -, you should remain on Ty as it is the most effective. Now I'm

[lindaincolorado]

ru4cats, Dr Vollmer does believe ms slows down around 65 but sx come back-just relapses slow with age per the NP.

I was giving odds jcv+ with no prior immunosuppressant use. If one is jcv- you can stay on Ty with basically no concern for pml.

[ru4cats]

lindaincolorado

Thanks for the update. Since I'm jc- (at least right now and will get a yearly test), I guess I'm on Tysabri for the foreseeable future. It's been good to me, and at 60, I hope to stay close to where I am right now, at least as long as possible.

[LL60]

Linda, thank you for the information. I am a little confused about something both you and REG said. Age slows down flares, but not sx? Could you go further into that, either of you?

I never thought about the dye harming the kidneys and no one has ever said anything. I now get my MRI at a private imaging place, they are 1/3 the cost as though my insurance and they were the first to tell me to drink a lot of water all the rest of the day, but not why to do that. Not once did Kaiser's people tell me even that.

Linda, so your doctor is comfortable with yearly MRI's, he doesn't feel that an MRI could pick up PML even before you got sx? That was sort of the only reason why I got one this year.

So glad Tysabri is still working so well for so many. It works great for me too. Really getting to be a nothing day. Just go in every 28 days and then go home and "sleep it off." Had enough energy this weekend to have my grand daughters spend the night. What fun!

[lindaincolorado]

Hi LL60, I don't know what to say other than I was told my symptoms would return once off Tysabri-these sx being worse balance, less energy/stamina. My QOL has been such that I don't want to take a chance having sx return (and probably get worse ). For me nothing was said about progression.

My neuro told me back in Jan that he knows of no one who was dx for pml by an MRI. To watch and know self and pay attention to sx especially cognitive. The NP stated again if sx (G-d forbid ) then an MRI.

Happy Holidays everyone (Passover and Easter)

[Tomjadg]

Thanks for the constant updates Linda.

I've done 14 Infusions, and am +.
I get a brain MRI on Friday as part of the 3 month check.

I don't get flares, just a steady decline in everything. I hate to stop Ty in case it is helping in some way.
The dye issue is new to me, although they just did a blood test I think to check kidneys.

I pretty much give up with this. My feet are numb, as well as heaviness and numbness in legs.Numbness has moved into the backside, and even lips and jaw have mild numbness.
I also noticed speaking is a bit harder.
I'm still able to walk a bit, although it is like I am on 5 foot high rubber stilts, with horrible balance.

The only positive is I do not have pain issues. Still working(lucky to have a desk job).

Ampyra didn't help, and tried to get LDN with no success.

Heck, at this point, I will try anything.

I'm glad this has been good for you. I would also continue with Ty.

[LL60]

wow, that's good to know - that no one ever got the heads up on PML from MRI. I am very careful about watching my body.
My doctor said something too about going off of Tysabri would bring a rebound effect. My QOF before Tysabri was not good and going back to that scares me as much as PML does.

Happy Easter to you too. Happy Springtime. I am looking forward to some nice warm lazy days. Hung up the hammock on the patio yesterday. That is sort of our robin around here. Winter is over.

[REG53]

LL60- I meant to say flares slow down with age. You can still have flares and progress. Sorry.

[Scooter24]

My neuro told me back in Jan that he knows of no one who was dx for pml by an MRI

According to Biogen that is incorrect, I was involved in a teleconference with them and they stated it was the best and most effective way to detect the beginnings of PML, they said your MRI will light up like a christmas tree, they also stated a number of people have been found to have the beginnings of PML via MRI and were able to get it stopped prior to it doing any damage.

The VA runs brain MRI every six months specifically for this reason, my nuero has also stated that they have have caught a few with the initial signs of PML.

[LL60]

Two doctors feeling the oposite way. Gee, that isn't very unusual is it. The best thing to do is go by what your own doctor says. But my doctor isn't very good with MS, but she is who I have so don't tell me to change, can't do that.

So I go by internet, Rocky Mountain MS Center, Mayo clinic and here, you guys. This is where I get my information. I have never recieved good, correct, or useful information from my doctor.

There was someone about a year ago who had a friend where they picked up PML just from the MRI, I can't remember who that was.

I will have to think on this. I get their newsletters and it seems like RMMSC really knows their stuff. But, so many first signs of PML are normal things with MS.

As someone who has to pay huge amounts for their MRI's, but who really doesn't want to skip something important just because of cost, I really need to think on this.

Anyone else want to add what their doctors are telling them?

[Strawberry Shortcake]

My next infusion is #43 for me. At my last infusion I was told that the PML risks haven't been tested past 20 infusions. The I saw the dr soon after my infusion and asked her, she told me that it has been tested for more than twice that long.

I am JCV+ so I asked if I need to take a break or something. She said no, it's still rare and I have an MRI every 6 months. She says that PML has been picked up on the MRI before sx even appear for most of the cases, then it can be treated. (what's the treatment? lol)

[lindaincolorado]

this is so frustrating I want to believe/trust my Dr and then there is other convincing info presented that makes me wonder ?? Doggone it ! Guess I'll just wait till I see him the end of July and discuss it again Hopefully my jcv test will be negative and then I'll have no concerns

[LL60]

There is an old song "Let's live for today and don't worry about tomorrow." My husband and I laugh about it, because that is sort of how we have lived our lives. Only now it is "tomorrow" and we really aren't prepared. So guess my life with MS will be the same way. Just living for today. And Tysabri makes today great!

Biogen called me to check in yesterday. I told him about our different messages the doctores were giving. He wasn't much help. He just is there to ask me how I am doing. They always say, talk that over with your doctor.

Happy Easter to everyone in whatever that means. In our house it is a family gathering and a nice day with the whole family as it grows and grows. Just like spring.