What outstanding news :D
I, too, am so happy for you!!!
I am considering not being tested... as I only want to hear good news;)
Linda

Get the test .... and then cover your ears. More information is always better.

Yeah for RW!!!! This calls for a party. I hope you are out celebrating!! I'm very happy for you. Yeah!! Yeah!! Yeah!! Yeah!! I could keep going.....

RW, I'm so happy for you!!! :)

...but, I haven't been following this Ty thread and I don't know what the JC test is. :o

But if you're excited, then I'm excited for you, friend! Hope you enjoyed your meet and eat with the Wabbit.

RW, I'm so happy for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I hope we all test negative...if we have a chance to be tested. My neuro is still waiting for Biogen to co-operate. I'll be calling my case manager at Biogen this afternoon.

huge hugs to all :grouphug:,
Shayna

Shayna--let us know what your case worker says and any other tidbits you find out! :hug:

Hooray RW!! :hug: :Dancing-Chilli::Dancing-Chilli::Dancing-Chilli::Dancing-Chilli:

Same with me. My neuro described it as Biogen dragging their feet. Hopefully in the next few weeks.

2nd call from Biogen rep
 

When the rep asked me if I had any questions :rolleyes: let me think !!
I asked about jcv test coming back positive. She said 80% of adults have been exposed to the virus-it is dormant and 65% of adolescents. It doesn't mean that 80% will get pml-just that they've been exposed to the virus.

Fifty percent of those that contacted pml had received immunosuppressant drugs prior to Ty.

As of 8/4/10 there are 71,400 people who have had Tysabri (I said 1 or more infusions-she just laughed ...??) world wide 40,800 are in the U.S.

Biogen does have 2 financial aid programs but does not help with infusions.

I complained again that we want info like it was presented till 7/24/08. I told her that next month will be 4 years for me and telling me chances of pml increase with time on Ty means nothing - I need and have the right to have real odds so I have the info to make an informed decision. She agreed, took notes and said she will pass on.

Just wanted to share
Linda

Well I am currently getting infusion #23 right now. Just waiting for the saline drip to finish. Today was nice--I got put in a room by myself (instead of the usual row of chairs with others). It was quiet and I could kick back and read and nap. Every time I come for an infusion I realize how much I love Tysabri! #24 is scheduled for November and then after that I am not sure what will happen. The clinic is still waiting on approval for the JC virus test. Big medical school = big bureaucracy. With a negative test I would love to stay on the drug. Anyhow, hope everyone is doing well!! :)

Flu shot
 

Last season I did not get the H1N1 flu shot. I have gotten the yearly flu shot for many, many years but after much consideration decided against the H1N1 shot. Now the H1N1 has been included in the regular flu vaccine.

For those on Tysabri what do your Drs' recommend and what is your opinion, please ? The vaccine is out earlier this year and I will not see my AZ neuro till Nov-whom I trust (CO neuro not so much :( ) As I am typing I thought about calling her :rolleyes: Duh ! Still would like to know what others will do.

I found out my AZ neuro is part of the Stratify Trial so I will get the blood test in Nov. Hoping and praying ...

Thanks
Linda

Your doctor is your best source of advice for this.

I had the flu shot and the H1N1 shot last year and had no adverse effects except for the usual sore arms for a day. (I had them the same day in both arms)
I'd rather have the shot than the flu! I work with people who don't know how to stay home when they are sick and they drag every germ in to share.

My neuro recommended not getting the shot

How come? Because of the H1N1 component or is the neuro just opposed to flu shots in general?

I do not know :( She is in AZ (my CO's opinion means nada to me)I had a return call from the office mgr. I will see her in Nov and talk to her then.

On another site a poster explained the H1N1 is not from last year-must be fresh. That it is just included as one of the flu's this year. I have weighed both sides, since getting the shot for many years will probably get it:confused: or not :winky:

Linda

cd4?
 

Ok so the decision was made to continue the ty even though it has brought my thyroid back from the dead.neiro says she has to test my cd4 every month before infusion and if it drops below 200 they have to pull the plug. Then of course we discover my ins preauth expires on sunday so they scheduled me for today which means no time to test it this time. Anyone else being told they have to be tested monthly?

Legzz,

No, no requirement for me to get monthly CD4 testing. The CD4 testing will tell you about the strength of your immune system. Why don't you ask your Neuro to get tested for the JC Virus Antibody first. The monthly testing would seem to be overkill if you test negative and might be appropriate if you test positive.

Chris

My neuro told me that the C4 and C8 counts don't tell us anything that would be helpful while you are on Tysabri. I've asked several times (and even another neuro in the clinic) but I don't remember the reasons why they said no on testing. :confused:

I had the reg flu shot last yr as did my kid. We did not have the H1N1. ( my choice) Then I was told the reg flu shot must be 15 days or more before TY. As usual no recommend either way.
I did not call the neuro this year - I've had mine as has my kid last week. So far so good. :hug

4 years completed
 

:D Yesterday I had my 49th infusion !
October will be the beginning of my 5th year. Since I now go 5 weeks and am considering six the #s do not compute with the years, nor will they.
I am very thankful for the life Ty has given me :Heart: Fampridine (Ampyra) may play a role-I don't want to give either up!
Linda

Infusion # 44 down, still no problems, no concerns.
I've finally started seeing a medical doctor as well as my neuro. I always get the yearly female stuff checked but have neglected to find a doctor since my favorite NP moved downeast more than a few miles and I figured I better get with the geriatric tests now before they overwhelm me later in life.

Guess what the first one is?


Ahem...have you had a colonoscopy yet?

Of course the doctor had his published on the front page of the local paper, so he's not going to let me get away without one now,is he?
Other than that he is wasting an hour every three months peering at past bloodwork and hemming and hawing over my one point below normal iron and my 101 blood sugar result (without fasting)
I don't like it. I want it all over at once and I'll call when I am sick, I PROMISE! It's a waste of my time and both the insurance company's and my money.

Am I the only one who feels this way? I understand the every three month neuro appt. because of Tysabri but I see no need to lose an hour to a review of past test results and the "how are you feeling" routine every three months! Am I just a throwback to a generation that didn't go whimpering to the doctor all the time or have things changed so much that it's a given that you go even when nothing's wrong?

Riverwild, I agree with you completely. My doctor would like me to have a colonoscopy but so far I've successfully resisted and will continue resisting until I have reasons to think I have something wrong with my colon that a colonoscopy would help to analyze.

I looked up the risk factors for colorectal cancer. There are about a half dozen of them, and I have not one. No relatives of mine have ever had colorectal cancer. I'm not counting a half-brother who had it.

I sometimes think that some tests doctors put people through are done mainly so that the doctors can protect themselves from lawsuits.

There is a questionnaire where you can find out your risk of colon cancer here:

http://www.yourdiseaserisk.wustl.edu...art&quiz=colon

Mine came out "much below average." I'm going to point this out if a doctor suggests a colonoscopy again.

Don't get me wrong folks. I truly would call him if something wasn't right or if I have a question about anything.

I don't even mind having my booster shots and flu shot and all that stuff once a year when it's due. I get all the female stuff done on the same day every year. I even schedule my MRI on the same day if at all possible so I only have to take ONE day out of my life for the tests and maybe another for the followup if anything needs attention, but it's the every three months when nothing is wrong with me that's driving me nuts!

I am going to bring this up with him when I see him next. I am sure he will listen to me since he's already had a good dose of me for the past few appointments. I told him a year ago that I would see him New Year's Eve this year, but it's been every freaking three months since then. I want a list of everything he thinks I need and I want it scheduled ONCE-all at the same time- and then get out of my face until next year unless something comes up.

(i'm getting more feisty as I age or as I feel better or something!)

I had the regular flu shot last year but not the H1N1. My neuro did not recommend the H1N1 last year. This year I went ahead and had the flu shot...which apparently includes the H1N1. I can't take a chance of catching the flu from my grandchildren so I went ahead and took the flu shot since there wasn't a choice this year. It was one shot or nothing at all :(

RW, I see my primary care physician once a year for a check-up and blood draw....I think he tests for everything because the vampires always take a lot of blood...LOL He prescribes the meds I'm going to need for the year and tells me to come back if I have a problem. The nurse calls me if there is anything in the blood workup that the dr wants to talk about with me. Otherwise I only see him when I need him.

hugs,
Shayna

Calling Biogen and complaining last month has not helped in anyway. I've been waiting. The Team Leader I spoke to said the problem was that the packet my neuro filled out initially did not include the confidentiality clause. That was rectified and my neuro would receive the lab kits in approx a month and begin testing. I saw my neuro yesterday and she still has not received the kits.

I hate Biogen but love Ty!!!!!!!!!!!!!!!!!!!!!!! I'm calling Biogen later this morning and complaining again. My neuro and I discussed what to do if I don't get tested because Biogen is dragging their feet. She said I can take a holiday from Ty if I want to but she doesn't recommend it because I'm doing so well. She also does not recommend that I try anything else...especially the oral meds which are new. I'm doing too well on Ty and she would prefer a holiday for 3-6 months.

Infusion #38 tomorrow. It really feels like I'm playing Russian Roulette. It wasn't this stressful when there wasn't a test out there to check the chances of PML. My neuro said we would discuss what to do if I test positive...if I ever receive the blood draw. Has anyone's neuro suggested that he/she stay on Ty even with a positive PML/JCV blood test????? I've only heard about those who have received a negative on their blood draw. If I'm correct the test tells whether or not one is more susceptible to PML.

I'm trying to stay calm and take it one day at a time. If I ever get tested and the test is positive I'll try to make an informed decision then. Hopefully, my neuro will have some info for me.

I'll let you know if I get anywhere with Biogen. I'm sorry I haven't been checking in regularly but, I'm really trying not to think about PML.

Oh...one other thing to mention. I told my neuro yesterday that the longer I'm on Ty the more fatigued I am. We don't know if it's due to the Ty or the fact that I can exercise more and for longer periods of time the longer I'm on Ty. If it weren't for caffeine or Provigil I don't think I could stay awake for more than a few hours...LOL There are days when it feels like the only things I am able to do are exercise, run an errand or two and sleep. I'm too tired to even see friends. When I go to visit my grandchildren for a week or so I don't exercise at all. I still need a nap during the day but I feel that playing with them is all the exercise I can handle...LOL

hugs to all....I hope everyone has a wonderful day,
Shayna

Sorry to hear that you are still having problems with the study, Shayna!
I've heard that a few people have had delays but it truly should be very easy once the necessary parts are in place.

I think we should all remember that testing negative/positive only means that you tested negative/positive. We don't know how the JC virus is transmitted. We don't know where it comes from. One could test negative today and be exposed and be positive next week...no one knows yet. Hopefully, this study will lead to more answers.

As for being tired, I still have fatigue. It isn't as bad as it used to be but I still take provigil almost every day. I still have spasticity, even though it's not as bad as it used to be, I wear myself out every day because I have always done that, even now I don't listen to my body until I am screwing stuff up and figure out it's time to shut down and rest and I am not sure if that has anything to do with Tysabri or not. I think it's just me...

MS still sucks even though it's easier now than it was during serial relapses!

Shayna,

You may want to look at this study with your neuro.

http://www.doctorslounge.com/index.php/news/pb/14729

Harry

Taken with a grain of salt because of the source. But I have heard of some TY patients reporting this.

Why are you having so much trouble being tested?

Sally, it seems to add up to bad luck, a bad Biogen Rep and a Clinical Liaison who doesn't return phone calls. When I called Biogen the other day and spoke to a case manager, Tara, she told me that my file had been flagged to be expedited as soon as possible. She also said that my neuro's office had been calling on a regular basis. Everything had been documented in my file....but, for some reason nothing was progressing.

She left an urgent e-mail and voice message for the Clinical Liaison, Erin, who is the only one who knows who has received the lab kits and when they were sent out. Tara called me back later that day. She finally reached the Clinical Liaison....who had neglected to call my neuro....and found out what was holding up the entire process. My neuro had completed the Web Ex Training as soon as she originally filled out the packet of forms and sent them back to Biogen. Unfortunately, the packet didn't contain the confidentiality clause and the Biogen Rep and the Clinical Liaison never informed my neuro that it was missing. When I called Biogen 6 weeks ago they sent out a Supervisor who had my neuro sign the confidentiality clause and fax it to Biogen. The Biogen Rep was still not returning my neuro's calls and Biogen has done nothing about it :(

Apparently the Web Ex Training must be done after ALL of the forms are signed. My neuro did the training before signing the confidentiality clause and no one bothered to tell her that although it is on record that she did the training it doesn't count and she needs to do the Web Ex Training again before the Clinical Liaison will send out the lab kits. I called my neuro and informed her that she need to redo the Web Ex Training.

Now we need to wait and see. I don't know if the Clinical Liaison is too busy or just doesn't want to be bothered but she has never informed anyone...including my neuro...why the lab kits have not be sent out. We...my neuro and I ....have no way of knowing when the Clinical Liaison will go through my neuro's info again. I've been told it may take a month. Once that is done it is up to the Clinical Liaison to send out the lab kits for the blood draw. My neuro has several patients on Ty and her office has called Biogen repeatedly not only for me...because I'm constantly bugging them...but, also for her other patients.

Sally, I have no idea how long this will take now that everything has finally been done in the order Biogen expects it to be done. Biogen and the people working for it has repeatedly dropped the ball. There is a limit to what my neuro and I can do :( It's very frustrating for my neuro and for me because most of our questions and phone calls to Biogen go unanswered. We were fortunate this time because the case manager, Tara, stayed on top of everything and did not give up until she had spoken to the Clinical Liaison and had an answer for me. When I called Biogen 6 weeks ago everyone I spoke to....the case manager, the supervisor and the team leader....told me they would call me back to check on whether or not there had been any progress. No one ever called. If Tara, the case manager I spoke to the other day, had not kept her promise to find out what was delaying the process we would still be in the dark.

As I've said before.....I love Ty but I hate Biogen :(

My 38th infusion was yesterday. I've had the "normal" side effects that I have with each infusion. I had a new infusion nurse. She's young but good!!!!!!!!!!!!!!! They've trained her well and she had no difficulty hitting the vein on the first try :) She asked me if I needed to have blood drawn and did the medical assistant give me any vials. That is a major improvement because I normally need to beg for a blood draw. I had one last month so it wasn't necessary this month.

I'll keep you posted on my long and drawn out saga with Biogen. Perhaps things will begin to improve now that everything has been done the way Biogen wants it done.

I hope everyone is having a wonderful weekend. Thank you for listening to me vent!!!!!!!!!!!!

hugs,
Shayna

Please see this for the actual verbatim report from the Archives of Neurology.
http://archneur.ama-assn.org/cgi/con...rol.2010.257v1

Two things to take note of:
1. "Overall, relapses occurred more often in younger patients with fewer natalizumab infusions prior to therapy interruption."
2. Many of the patients with rebound activity had "disease refractive to multiple therapeutics before starting natalizumab treatment." In other words, these were people with aggressive MS from the very beginning who failed on other drugs.

When and if I go off Tysabri, my doctor has a plan. I will be off Tysabri for 90 days before starting a new drug (which will likely be Gilenya). However, on the 60th day of this 90 day break I will be given one dose of IV steroids at 1,000 mg. The steroids are designed to limit risk of inflammatory rebound during the transition.

Sounds as though your doc will be well prepared should you decide to stop Tysabri.

With only 32 patients in this study and a variety of disease level, I hope their findings are indicative of what to expect. Whatever your decision, I hope it works out well for you.

Harry

ECTRIMS news about the JC assay

http://ir.elan.com/phoenix.zhtml?c=8...3366&highlight=

Well, I had infusion #24 today. Generally no
problems except a headache and fatigue when I got home. However, a woman getting IVIG in the infusion room insisted on leaving in the middle of her infusion, got argumentative with the nurse and doctor who was called in and tried to pick a fight with another patient. She ended up leaving and things calmed down.

I'm most likely going to get #25 (my last infusion) in Dec. and then I'm off on vacation abroad. No word still on the JC virus test at my clinic! Of course if I can get access to it and I test negative I will stay on the drug.

I have to confess that the latest PML case has freaked me out a bit given that the woman with PML has been posting videos on YouTube and her husband is now keeping people up to date with her status online (see the flowers4ms facebook page). I guess when you put a real person together with the disease it makes it seem more real and frightening. I wish her well.

Sorry to hear that you STILL haven't gotten word on the JCV testing yet, Natalie!

Overseas for Christmas?? Any room in your suitcase? :p

For those who want more info on the woman doing youtube vids who has PML, here's a link (thanks Sal!) I haven't watched it because I'm still on dialup and it's slooooooow! I'll have to wait until I am in an area with a hotspot and can check it out so if someone else watches and can review, please post.

http://www.youtube.com/v/X4aOG2UJDFA...</param><param

I had # 45 yesterday, got moved up a day on both infusion and MD appt. AAARRRGH!
I went in with 2 hours sleep, I was late but got infusion early enough to make it to the neuro on time and he was running late! I slept for a few minutes during infusion, got a lovely lunch and it was as usual, no problems, no concerns on my end.

No drug holiday talk, did the times walk for Ampyra and was told I have the fastest time out of all their pts. on Ampyra, talked a bit about ECTRIMS and the PML cases since last appt, talked about reducing my appts. back to 6 month intervals, but decided to stay at 3 months for now. I am still the only negative result out of everyone tested in his practice, pondered yet again who is positive and negative and how transmission happens, talked a bit about Gilneya, he says a LOT of his patients have called to ask about it, med center is setting up where pts will be monitored for their first few doses, sounds like it's going to be monitored at every step.

Life is good! Hope everyone's doing well! :grouphug:

I had my AZ neuro appt today at which I became part of the stratify trial. I was told I would find out the results in 5-6 weeks.

My neuro does not believe in CCSVI but when I asked for the vein MRI she said she would order it for me. She said beyond that I would be on my own.

On Dec 3rd (which happens to be my 62 birthday :)) I will get my 51st infusion

HAPPY Thanksgiving !

Linda

Happy early birthday Linda! Congrats on the 51st! I'm glad you are also pursuing the CCSVI angle.

Glad to hear that you FINALLY got into the trial and had the test! Good to hear you are doing well! Good Luck with the CCSVI MRI, please let us know how it comes out.

As Natalie said- Happy Early Birthday!

I had my 39th infusion on November 12. It went well and I had the normal side effects. However, I don't know if I will continue with the infusions next year. I do plan on getting an infusion in December of this year...that will be #40 for me.

I've been told by Biogen that there is no one in Nevada who is qualified to do the blood draw. My neuro gave up jumping through the hoops that Biogen was constantly putting in her way. A Senior Tysabri Leader at Biogen is attempting to find a place in California for me to go for the PML study. It has to be within a reasonable drive because we go to California every 6 weeks to see our grandchildren. That is a 7 1/2 hour drive for us. I would love to be able to go somewhere while we are in California and cut down on the driving time. The drive itself is becoming exhausting and the stress of not being able to get the blood draw is taking a toll on me. If Biogen doesn't find a dr somewhere in California that is within a 4 hour drive of my daughter's house I'm giving up......that would be an 8 hour round trip drive :( Airfare is simply too expensive. I'm running out of options.

I hope that everyone who celebrates Thanksgiving has a wonderful time with family and friends.

hugs to all,
Shayna

Shayna,
Sorry to hear you are still getting the runaround from Biogen! I cannot understand why they would tell you something like that.

My doc is in a 25 bed medical center, not some giant teaching hospital. All it took was a blood draw and the sample to be shipped overnight to the selected lab. It's not rocket science. The office nurse did mine, along with 3 other samples, and they were shipped that day in a cooler with an ice pack.

It appears Biogen still has their head stuck where the sun doesn't shine when it comes to Tysabri patients. You'd think they would have learned after all these years.

It's time to start agitating them again.I have letters and calls going out!