Good morning. This is my first time posting here, so please be patient. I was diagnosed in May 2011 and put on Avonex. Since then I have experienced significant cognitive issues- to the point that I've already applied for disability which is unreal. Anyway my neuro suggested ty or gilenya. I've tested + for jc but gilenya comes with its own cons. My eyesight is already pretty poor so I'm concerned about that possible side effect; also my bp is always low, so not sure about that either. I've also heard such good things about ty improving cognitive function. I know it's a personal decision, has anyone out there experienced this? If so which did you choose and how have things turned out?
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Diagnosed June 2011, Avonex 7/11-12/11
"We don't describe the world we see, we see the world we describe" -
Hello Tinkerbell65,
i'm a few hours north of you. The road to the superbowl goes through my city (kind of really proud of that,this weekend).
gilenia was not available when i started tysabri, so i did not have a choice to make. but i know how frustrating it is to make the choice when I don't have the information I have later. i know without a doubt, with what i know now, i would be treading water right now given your choice.
there are 2 things happening this year that i would want to know.....and from there i generate 3 possible directions I would discuss with my doc. none of the directions include gilenya as a possible choice.
1. in the next few months the US FDA will issue their ruling on the jcv test, and how it will be used in the tysabri touch program. and this ruling may have ramifications on how insurance covers tysabri for jcv+ people.
2. In the last quarter of the year there is another oral med BG-12(designated on fast track status in the FDA) that will be coming out with a better safety profile than gilenya--without the strong risk to vision that gilenya has-- also they have not determined a cause of the recent death that happened 24hrs after taking gilenya yet.
Possible Directions i would pursue(talk to your doc if one is a possible plan for you)
1. Rebif is the same substance as avonex(interferon beta1a), its a 3x a week subcutaneous injection & every one of the 3x a week injection contains more interferon 1a than the single weekly avonnex injection. this is the plan i would ask the doc about first...switching to rebif until bg-12 comes out or the fda rules on the jcv test with how the Touch program will be strengthened for jcv+ people using tysabri.
2.Start tysabri until BG-12 comes out then switch to BG-12. No one has gotten PML within the first 12 months of using tysabri--except for one young gentlemen who had used an immunosuppressant in the past. he got pml 6 months after starting tysabri.(you haven't used an immunesuppresant in the past?)
3. There was a 3rd plan i had thought about before i started typing this, but i can't remember what it was?
I really would only consider the above 2 options anyway.
Some more facts i based my ideas on.
1.both tysabri & gilenya are new--so neither have long range affects known. Rebif has been out since 1996,between 1993-1996?). So longer range affects are known compared to gilenya or tysabri. if i was treading water before making a decision to start bg-12,...bg-12 will be new too
....I would not want to temporarily put any one of them into me if i had plans to switch to something else later, if i didn't have to.
2.some doc's have been using tysabri for a couple of years to stabilize MS while the risk of PML is lower, then switching to something else when the risk of pml gets higher after 2 years. so using tysabri temporarily is a known plan.
3. there is a "rebound affect" after stopping tysabri where a persons ms gets more active for a while after stopping tysabri, than their MS had been before starting tysabri--so that's a risk of using tysabri temporarily. 40% of people sropping tysabri will have a rebound affect, 60% won't.
those stopping tysabri before 16 months were less likely to have a rebound affect, i read in another article.
4.Gilenya is newer than both tysabri or the jcv test.
there have been a few people who switched from tysabri to gilenya when they found they were jcv+ but not that many switched from gilenya to tysabri--so there is less known about that change,fewer that have done that change,than a change from tysabri to gilenya. Tysabri is around 60% effective Gilinya is about 50% effective so a need to change from gilenya to tysabri would be if gilenya is not effective enough--less experience with that change than the other way.
that's what i would consider if i had to make a decision now, knowing what i know now. Good Luck with your decision & more importantly.... Go Pack Go!!!!!!
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0485c10-
Please call me Tink- it's what my friends do. Especially fellow Packer Fans. So excited for tomorrow! We were invited to a party but declined- partly due to my symptoms acting up, but also because I can really pay attention without distractions. I DON'T WANT TO MISS A THING!! Not yelling at you, just excited.
Thank you so much for all the great info- very, very helpful. I sometimes feel overwhelmed by the amount- and contradictions- of things I find on the net. Which is obviously why I came here. I will talk about all your points with my husband and my neuro and will let you know what I decide.
Thanks again- hope to see more of you!Diagnosed June 2011, Avonex 7/11-12/11
"We don't describe the world we see, we see the world we describe"Comment
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Hi Tink,
Superbowl champions...1967,1968,1997,2011 & 2012!!!
going for 5.
0485c10(lynn)xxxxxxxxxxxComment
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2013 ok with you for the next superbowl?
being 1st seed is rather fun too, if you want to do that again in 2013?
may the Giants go all the way & win Superbowl XLVI (that way we were beat by #1, not #2)
(still going for 5, just delayed..it's not if, but how soon
)
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Like everyone else, so disappointed last night! Seems like neither side showed up- everyone was totally off. Had been hoping the inspiration of winning for Philbin would've helped but maybe the emotion was too much. I have to admit I haven't been happy with Capers at all this season- nothing ever seemed to change.
On to bigger and better next year- the pressure won't be so high and we'll blow them away!Diagnosed June 2011, Avonex 7/11-12/11
"We don't describe the world we see, we see the world we describe"Comment
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MY EXPERIENCE
**Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
I want to share my experience with you. I have had MS since 05. Began using rebif, built an anti-body to it. Had relapse in 06, was in wheelchair.
Went on Tysabri shortly after on market. Went from wheelchair to walker to cane within 4 months. There is no proof the Tysabri makes a person better, only proof it stops them from progressing with ms.
New neurologist convinced me to go to Gilenya. Have to be off Ty for 3 mo. before beginning new treatmt. I was on Ty for 5 yrs. Went off for 2 mo.
Landed in hospital day after Christmas. Lost my complete left side, including my left hand. I have nerve pain like I never had. My personal opinion is Ty did me right and wish I never stopped.
Now I have decided to go back on Ty. Dr. was not happy with me, but agreed to allowing it. I contacted Ty hotline to get current stats on PML. I am convinced it is worth risk, (very minimal) Although Ty is fairly new, I have been on it since the beginning. Gilenya is brand new in comparison. I am not in the mood to start another treatment and be one more patient making stats of new drug.
Ty hotline told me as of Dec 1, 2011 there were world-wide (including Europe) 192,200 patients on ty (used for ms and chrones disease) Out of that amount there were 197 patients diagnosed with pml. You do the math.
LoriComment
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Rebound affect i wrote to you about. happens to 40% of people when stopping tysabri and it doesn't happen to 60%. it happens less frequently to those that stop tysabri before 16 months.Originally posted by lorilu View Post
for those that get rebound affect(not all do when stopping ty), it happens about 3 months after stopping. this is almost a classic description of rebound effect, when a persons ms gets more active than before they started ty when stopping ty.xxxxxxxxxxxComment
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Oh if you go to my home page, i maintain a list of links to articles that i think others might be interested in reading.
you can get to my home page by clicking on my login name and it gives you an option to go to my home page. i put links to 2 articles on BG-12 that you might want to read and ask your doc about.
one article was from 2008 when BG-12 just started its phase iib trial and one from 2011pase iii)...it really sounds better for you than gilenya if your concerned about vision. should be available late this year.xxxxxxxxxxxComment
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God in Heaven, (and that is a genuine prayer, so it's not actually blasphemous), this is the best they've got?Comment
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It was just an off night for the team. everyone has off nights, including whole teams. it just was a very bad night to have an off-night whats scary now is the amount of training staff that is being recruited by other teams---there is a danger to "peaking too soon". but it does make for a pleasurable season overall. i think all had fun until the end.
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0485- I think you're right about the Pack. Last year they started slow and built momentum; just the opposite this year. Here's to hoping they get back to the basics, stop dropping balls, protect Aaron and keep all the players we really need. Kind of wondering about Finley....Diagnosed June 2011, Avonex 7/11-12/11
"We don't describe the world we see, we see the world we describe"Comment
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Lori- Thanks for sharing your experience!Diagnosed June 2011, Avonex 7/11-12/11
"We don't describe the world we see, we see the world we describe"Comment
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lorilu,
I am so sorry that has happened to you. I hope you can restart Tysabri soon and at least get some relief from your symptoms. If you got such good results before, no reason why you can't again. Right? I hope so.
My I ask what you meant by "Ty hotline?" Do you mean Biogen? Active Sourse? I did not know the number went up to 197. When ever the nurse at Biogen calls me to check in, her numbers are always below the numbers I have. I get my numbers from a web site in Germany.
Please let us know how you are doing.
I go for #33 in two weeks. Tysabri has been a great drug for me also.Comment
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LL60-
You know, i follow PML incidents closely also. i have 193 too. (I compliment you on your eagle eye for identifying that 197, as new. Your much more on thre ball than i was).
I'm "speculating" that 193 is the incidents of tysabri induced PML for MS treatment.
And 197 is for MS & Crohn's Treatment??
that would mean 4 people with crohn's disease got PML while using tysabri.
the tysabri "touch" monitoring for crohns disease is much stricter than for MS. In their touch program they can use tysabri for 6 months & if it has not made an improvement after 6 months they have to stop using tysabri.
in the MS touch program, a longer time is given for tysabri to show improvement (defined on an individual basis between the doc & patient. In crohns its defined by their touch program: a colonocopy before starting tysabri to check for the amount of lesions, then a colonoscopy 6 months later that must show improvement or they have to stop tysabri)
might be a "similar" change made to the MS touch program when the FDA issues it's ruling on the jcv antibody test and how it will be used in the touch program. the fda should make an announcement sometime in the next few months ????
in the original trials, no one has gotten ms in less than 12 months when ty was used for MS.
but one person got pml & died from it when ty was used to treat crohn's disease after 8 months.
i thought that must be why they defined a 6 months time frame in their monitoring program?
My speculation: Changes to the touch program could be something like that? jcv+, over 50, or past use of an immune suppressant each has their own limit on the amount of time ty can be used before it must show an improvement. or it has to be stopped?
over 50 has a lower survival rate & greater disability If PML happens. it doesn't increase the odds of PML happening.
past use of an immune suppressant greatly increases the odds of PML happening.
and jcv+ just increases the odds, not as much as past use of an immune suppressant..
the FDA could define that they all have their own time limit to show improvement?xxxxxxxxxxxComment
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