There has been many recent articles that the risk for PML goes up quite a bit after 24 infusions...so a few TY users are thinking of stopping before 24 infusions......and are considering whats next.
On the Feb,16, 09 the FDA made that announcement that there had been 13 confirmed PML cases, only 4 were in the US, 8 were in Europe. In July Biogen stopped announcing PML cases, thinking it was counter productive to focus on the risks of TY instead of the benefit.
Last week the EU announced they were reviewing TY because there were now 23 confirmed cases of PML. It took 3 YEARS TO GET THE FIRST 13 CONFIRMED CASES....It has taken 3 months to get the NEXT 10.
I was out of the house all day, I got back and my email was full of alerts that a 24th case of PML happened on Friday, less than a week after they announced 10 cases in three months. I post all those articles in the TY group...either as a post or in the news section..and I will do that, but I don't have the stomach to do it this evening. I will do post it tomorrow..
Did I thank you yet for posting how it was going for you, yet? THANK YOU!!
One of the researchers who developed TY says he is developing an antigen test to determine who has the JCV virus. He says 50% of the people have it, 50% don't. If there was a way to determine which peokle have no PML risk with TY, that would be very helpful and those that have a risk..because they have the JC virus could be monitored more closely.
Sylnmiss is the only one I know who did that vacation. You could leave her a message to ask her questions about it.... she popped in to say hi. She spends most of her time on Patients Like me where she uses the same login name. That may be a way to contact her sooner.
Here is the post she made here, about her Ty holiday:
http://www.dailystrength.org/group...
Sandi's doc had told her that he is uncomfortable with TY after 24 months. What he does, is people who are getting FANTASTIC benefits from TY he switches them to a 6 week dosing schedule instead of 28 days, believing those couple of weeks allow the immune system back into the brain to fight off any JCV virus in the brain. In people who are just having adequate results from Ty after 2 years, he likes to switch them to something else with less risk.. He proposed Rituxan with Copaxone for Sandi. Rituxan has a PML risk too, but it is a lower risk.
I put a link to sandi's post, where she described what her neuro had said in this thread.
So you can read what Sandi wrote..My reply with those links is Reply #2.
http://www.dailystrength.org/group...
Boo's doc is also talking to her about switching before 24 months. He was considering betaseron. The only other DMD she had used before TY was Copaxone, so she has not used an interferon. At her last appointment, she discussed the oral meds..specifically Cladribine. Her doc is going to a conference that will have an update on cladribine,t...so she is suppose to call him on Friday to find out what he learned about Cladribine . You can read her post here:
http://www.dailystrength.org/group...
Me, after I sent you that email asking you how going off TY had been...it sounds like it got much worse....
I went to my doc appointment asking to go on copaxone, because I had only used betaseron before. The infusion room nurses & I were not getting along at all...I was so frustrated I would have stopped ALL MS Treatment.
She said she would prefer I stay on Tysabri, but if I had strong feelings that I should stop TY, I should just skip my infusion, schedule an appointment with her 30 days later, after the washout period so I could start my next med.. She has some thoughts of a med I could do next, but its not copaxone. She didn't tell me what is next. It's like being on the game show, 'Let's Make a Deal'.
Do I want to select Door #1 which has a med I know:Tysabri...or do I want to select Door #2.... the med behind Door # 2 is a surprise. Which door do I want to select?
She also switched me to a different infusion center. The new center is about 10 miles farther, but it is smaller, has a total of 2 nurses. Both are very nice..and are being extremely considerate to me....I got a CNA certification and worked my way through college in nursing homes & as a temp...so I have REALISTIC EXPECTATIONS OF WHAT NURSES DO. And the nurse at my last infusion center were not doing it! I am so grateful to be out of that infusion center !!!!!....it could be that the nurses where just very badly short staffed? I don't know..but I do know that I did not observe good nursing practices there. I'm relieved to be away from there and not having to go back there every month..
My doc is married to a doc & the 2 nurses in my new infusion center are off duty & on duty friends of my doc & her husband...I feel so DAMN much safer at this new infusion center! So I will stay on Tysabri at least until my next appointment with my neuro in February. In November I go for my 15 TY infusion. I'm not certain if I will continue to 24th infusion. I'll keep my eyes open to see what comes out by then.
By the way, I have been getting the FDA database, where they publish the location, age, # of infusions of possible PML cases investigated. Their database does not say whether they were confirmed or not.. its just interesting to see the possible PML investigated. The quarterly FDA report comes out 4-5 months after the quarter ended. So I know from news reports today, that 24 cases have been confirmed. I don't know how many were investigate to get the confirmed amounts.
But when the FDA announced that 13 cases of PML had been confirmed on 2/16/09....at that time 27 cases had been investigated for possible PML....14 were not PML, 13 were. It won't be until December until I find out how many were investigated to get 24 confirmed cases.
You can find that in the news section, just scroll down to FDA Adverse Reporting System (AERS) of Tysabri PML.
http://www.dailystrength.org/group...
Oh and thanks again for letting us know about life after TY, sorry its not going so well for you. At a minimum, you did "the TY Vacation" if you go back to it.....in the published histories of people who got PML,the ones that are available...I did not read one...about a person who stopped Ty when it was pulled from the market in 2005 then resumed Ty when it was returned in 2006. So perhaps there is some merit to the vacation theory? Or going to a 6 week dosing schedule, like Sandi's doc does.
Lynn
Discussion Topic
I can't believe it!!!
Posted on 10/29/09, 08:24 pm
I have been off Tysabri since Jan. '09. I got so suddenly freaked out about PML At that time my neurologist and I had talked about taking a 'holiday' from Tysabri. He was totally against that idea. I hadn't been on any meds, since Jan. I am back at work after having 2 years off, I tried Avonex again this past Sept. and that didn't work out. Just had me throwing up again. He tried me on Betaserum (sp), same reaction. I was told that Cellsept was an orak med and was the way I shouold go. That was back in early Sept. I have had 2 flares since and my neurologist now wants to pull me out of work. He says it is too stressful. What is stressing me is not having any medication. Today while at work I get an email from him stating that he would like me to restart Tysabri. This time with taking 'holidays'. I am so confused. HELP!!! Those of you that are currently using Tysabri, How many infusions have you had? Does your neurologist have you take 'holidays'? Any infor words of wisdom that you can give me will be greatly appreciated.
Thanks in advance!!!
Chrissy
Thanks in advance!!!
Chrissy
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Reply #1 10/29/09 10:32pm
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Reply #2 10/29/09 10:54pm
Lynn...thank you for your detailed reply. Actually life after Ty actually has been really good. I am extremely frustrated right now because I did not want to be put in this position while back at work. The majority of the stress I am feeling, that is causing the flares to occur, is due to being so unsure what to do about my medical future. I want to continue life as it is, with very little noticable disability, and not fear that the medication I am taking my end my life. -
Reply #3 10/30/09 4:27am
Chrissy,
Its 3 am and I'm having trouble sleeping and thinking because I'm so tired I just want to sleep. The reason is I drank caffinated coffee for supper. I know better than that, but I think maybe the "know better" part of my brain atrophied. So here I am at 3 AM.
Thinking about this article has got me in front of the computer to check if I really read a few lines in it. I just sent a link to another MS friend to ask her if any lines jump out at her too. Its an article written by Sandi's doc. see what you think of it and if any lines jump out at you too.
So sorry you have to get up and go to work tomorrow. This caffine might not wear off until later this morning, I'm glad I will be able to sleep then
Here's a link to the article.
http://www.creditcards-onthego.com...
. -
Reply #4 10/30/09 4:35am
I have had 24 infusions and my doc has never had me take a drug holiday. I get a C4 test every three months to monitor possible PML starting. My doc runs an MS center in Portland, is nationally known, flies over to see the docs whose patients come down with PML when it is reported to discuss Tysabri with them - he is very careful about his patients on Tysabri. -
Reply #5 10/30/09 6:01am
I need to make a correction to what I wrote....its a shame, I am able to delete the incorrect post & replace it with a correct one....but that doesn't make it clear enough that it is incorrect. For some reason I started sayuing the FDA made an announcement that there were 13 confirmed cases of PML in febuary....I'm not certain why I duid that?
The fda confirmed 13 cases of PML world wide on September 16, 2009 that as of September 08, 2009 it was 13 confirmed cases. Six weeks later the EU confirmed that there were 23 cases confirmed world wide, the next week they said there was a 24th case the previous week.. -
Reply #6 10/31/09 11:57am
shevan--Thank you for your information. I meet with my neurologist on Wednesday and I'll ask him then about the C4 test. Back in Jan. when I first stopped Tysabri he mentioned that there was a test that could possibly predict if you would or would not get PML. I will see if it is this test. If it is and he is willing to give it to me then I will not have a problem with restarting Tysabri. -
Reply #7 10/31/09 5:51pm
If you go to the original post of Shevans test, in Reply #1 you find a description of it and at the end you will find an nih(national institute of health article on it. i provided links to them, not sure if you saw it...it woul probably be helpful when talking to your doc about it. -
Reply #8 10/31/09 5:56pm
I don't think there is a test that will predict if you will or will not get PML...what this test does is establish the baseline a person is at, then if it varies by a certain amount from their normal they may be at greater risk of getting PML. The test is used in HIV patients...another immune system disorder...Read about it. I provided links to the tests and I provided links for you to get to those links.. -
Reply #9 11/03/09 7:45pm
HI GIRLS
I GO TO A MS SPECIALIST, AND IM GOING FOR MY 34TH SHOT ON THE 17TH NOV...I HAVE HAD NO SIDE AFFECTS, AND I ASKED HIM ABOUT A HOLIDAY...AND HE SAID NO NEED, SO WE KEEP GOING....I FEEL GOOD! -
Reply #10 11/03/09 9:35pm
I wish very soon that they would please come forward with a cure for this damn disease. This way there would be no injectables, no side effects, no PML, no disability progression and so much less suffering. Please keep searching for a CURE!! Its all in Gods hands.
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