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Old 02-18-2013, 03:48 PM
Julie Gould Julie Gould is offline
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Join Date: Feb 2013
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Fascinating to see the difference in treatment/ advice over there in the USA compared to here in the UK. I and my sister have MS and are both on Tysabri. I am JCV- but never had any other DMD. My risk factor is 1/11000. My sister was jcv- until last month when she flipped to jcv+. She was on 2 DMD's before Tysabri and has been on it for over 4 years. Her risk of PML is now 1/90 so her neurologist in Cambridge, England has advised her to stop. She changes to Fingomolid in 2 months and then will qualify for Campath in a year. My neurologist in London, UK says he would advise her to stay on Tysabri. Seems even the experts can't agree on this issue!
I think it really is a personal decision based on how well tysabri is working for you.

At least here in the UK we don't have to worry about health insurance covering either tysabri or fingomolid as all our treatments are free ( but we do pay 40% tax). Hope you reach the right decision for you. Take Care, Julie
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Old 02-19-2013, 05:38 AM
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KyleW KyleW is offline
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1/11,000 i can live with (and do). 1/90 would be a real gut check

At weddings, my Aunts would poke me in the ribs and cackle "You're next!". They stopped when I started doing the same to them at funerals. Dave Barry
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Old 02-19-2013, 06:37 PM
Myoak Myoak is offline
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Hi ADavid,

You are correct! The Biogen’s Tysabri website does say and I quote, “Tysabri does not cure MS and has not been studied for longer than two years or in patients with chronic progressive MS.”

Isn’t it strange that Biogen would make that statement? My wife began the Phase 3 study in March of 2002 and continued in that study 35 months until February 2005 when Tysabri became FDA approved.

Makes you wonder what they were studying during those 3 years if they weren’t studying Tysabri, doesn’t it?

When Tysabri was suspended due to PML, the FDA posted this message (3/1/2005) on their website,

Quote “The manufacturer is notifying physicians of these cases and informing them that use of Tysabri should be discontinued until further notice. Similar notices are being sent to physicians who are studying Tysabri as part of a clinical trial.” End Quote.

So, the FDA says Tysabri was being studied back in 2005 and I took my wife for infusions 35 consecutive months between 2002 & 2005 because she was participating in a study but Biogen says Tysabri “has not been studied longer than two years”. Who is telling the truth, the FDA and me, or Biogen? You decide.

Everyone can speculate why Biogen persists in making a statement like that. My guess is that it is a legal maneuver to avoid culpability if they get sued, but who knows? Money related, IMHO. Money trumps truth when ethics are lacking.

Here is the link to the FDA website I quoted proving Tysabri was being studied back in 2005; it is dated 3/1/2005:

Thanks again for pointing out Biogen’s fairy tale ADavid; it always helps to clarify the character of company we are dealing with.
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Old 02-20-2013, 10:52 PM
ADavid ADavid is offline
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I'd like to see a formal study where patients on Tysabri are studied over a long term, say 5 years + and data compiled on how many develop serious side effects, incl. PML. The data that you get now are raw numbers, e.g. X # of cases of PML, and odds, 1/11000, then 1/250 for developing PML, etc. But what's lacking is the long term data you see with other drugs, studies where patients are followed for a long period of time. Empirical, long term data is either not available, or published, for this drug.
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Old 02-21-2013, 07:09 AM
Myoak Myoak is offline
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Unfortunately, after a drug gets FDA approval further reporting is not mandatory. Often a drug company volunteers information but they are not required to publish the data they collect after their drug is FDA approved. There is no law requiring it.

There is a law requiring the reporting of clinical trials. However, it isn’t enforced so suppression of clinical trial results is common.

February 1, 2013 Ben Goldcare wrote a fantastic article in the NY Times titled, “Health Care’s Trick Coin” talking about information suppression common with the drug companies.
Johnson and Johnson is facing “over 10,000 lawsuits over an artificial hip that has been recalled because of a 40 percent failure rate within five years”.
J&J’s studies? Quote, “Internal documents showed that executives had known of flaws with the device for some time, but had failed to make them public.” Link:

Do drug companies mislead by withholding trial results and critical information? Yes, and it causes harm. Are some companies more transparent than others? Sure, especially when it is to their advantage. IMHO, most of them demonstrate they are ethically challenged, to say the least. It’s a money game, ethics is a side issue. We have to deal with it eyes wide open.
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Old 02-21-2013, 10:53 AM
Andy75 Andy75 is offline
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"Do drug companies mislead by withholding trial results and critical information? Yes, and it causes harm. Are some companies more transparent than others? Sure, especially when it is to their advantage. IMHO, most of them demonstrate they are ethically challenged, to say the least. It’s a money game, ethics is a side issue. We have to deal with it eyes wide open."

Well said.

The amount of trust we as patients and consumers can put in big companies is limited. Pharmas are for-profit organizations. Despite their altruistic proclamations of truly wanting to help patients, I am wary. I am wary of the companies and doctors I have encountered who use scare tactics (e.g, if you don't take Ty, you will be in a wheelchair the rest of your life) to push the medication.
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Old 02-23-2013, 04:20 PM
ADavid ADavid is offline
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Yeah, my doc and his staff unabashedly push Tysabri, they sing its praises and denigrate all other DMD's. I was recently diagnosed, and being overwhelmed with everything at the time, I agreed to go on Tysabri. Still on it, but being always the skeptic, I've grown suspicious of my doc and his staff's cheerleading to the point I suspect they must be getting some kind of kickback from Biogen. The TOUCH clinic is at their own office, and I swear, it seems every patient they have is on Tysabri. That clinic gets crowded! But at the same time, I'm not progressing (granted only been diagnosed a few months) and while I've had some Tysabri side effects, the fact my MS seems stable is encouraging.

But each time I'm getting infused I keep thinking about Biogen's open admission this drug hasn't been studied in patients' longer than two years. Why would a pharma say that so often, and so loud? In case this drug goes the way of Vioxx and gets yanked because it has some yet to be discovered awful side effect? I mean, hell, PML is plenty scary enough, although there is the JCV assay, which, by the way is paid for by Biogen (conflict of interest?) Supposedly I'm JCV-.

My paranoia is getting the best of me. I'm almost to the point of going off all DMD's and just trusting God and luck. MS scares the hell out of me, but so does Tysabri. Which is worse?
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Old 02-24-2013, 01:05 PM
LL60 LL60 is offline
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Trusting in God is good - luck, not so much. MS is just so unpredictable. Not doing anything may do little in your progression. And those taking all the best medications out there still progress horrible. The NMSS does recomend starting on a med early and staying on it. is so hard to tell which med to take and what is best for you. Or if taking no med, for you, is best.

I wish I was better about remembering things, I could send you directly to her video. But all I can do is guide you to go to youtube and look for the video by this female doctor who has MS and was on Tysabri and other MS meds and continued to progress to cane and then to wheelchair. She took her care into her own hands and took it from a diet standpoint. She came up with a diet for herself that for her worked wonders. She went back down the scale from wheelchair to cane to using nothing at all.

I watched it 3 times writing down all the foods she eats. The only thing not already in my diet is kale. I do not like kale. But keep trying.

It was 5 years before I really came to terms with having MS, so I understand your feelings. I would get up, take my daily injections and after those two minutes not think about it or allow anyone to talk to me about it.

I am the opposite of you. I stay on Tysabri against the advice of my physican. She fears it and only has 10 patients on it. She said I am doing the best on it of anyone. My insurance company want me off of it. I was approved for the $10 copay though Biogen, but didn't quite get under the wire for my Jan. 4th infusion. My insurance company billed me the $2380. I had been paying $981 or there abouts until I hit $2500. I can't fight with them anymore. It took 7 months just to get them to send Biogen what they needed for me to get the low copay. I'm too tired to fight anymore. I truly believe they did that to try to get me to go off of it. I just sat down and wrote a check. It means no dentist this year and no new glasses.

That's okay, I am still on a drug that has been a life saver for me. For me, this is the right decision.

But what brought me to the message boards today was a question I'd like to throw out there - especially to those who have better websites to search things than I can find.

Why do you think the death rate from Tysabri stays so high and in fact has now gone to 23%? I would think with the TOUCH program in place and many people taken off of it due to JCV status, that it would be going down, not up? 7 more people died last month from PML they got from Tysabri infusions. That makes me very sad for them and their familes. They thought they had found the best treatment for them, and they lost their life over their choice.

Man, am I sorry I went so long here. But I got into a little bit of trouble here when I didn't fully get all my thoughts out.

ADavid, I just would like you to find a treatment that not only works for you, but also that you feel comfortable with. Maybe you could make an app. with your doctor for just the soul purpose of sitting down and talking about treatments. If he doesn't do that, maybe a NP in the group. Many times they are more willing to do that.

If I can find the exact way to find that youtube video, I will post it. I bet others would find it interesting too.
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Old 02-24-2013, 02:02 PM
LL60 LL60 is offline
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Her name is Dr. Terry Wahls.
She also has two books on nutrition.
But...even though it is from 2011, this youtube video is amazing. To see the difference your diet can make in MS.
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Old 03-17-2013, 10:00 AM
EileenB EileenB is offline
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Quest testing for JCV - save some miles!

Originally Posted by ru4cats View Post
I am also JC- (3 tests now and 33 infusions), and in December my neurologist said my risk was 1/11,000. I need to have the test done every six months, and Biogen pays for the test at Quest labs. I need to travel 120 miles, but it makes for a nice day out.
The infusion center where I get my Tysabri uses Quest, and I just give them my neuro's prescription form and they do the blood draw when they do the infusion. AND, I downloaded the smartphone app, Gazelle, from Quest so I can request and keep track of my results. I get an email when the results are ready to view. I like a nice drive as well, but may be worth checking into. AND keep track of those miles...they may be deductible medical expense!
"If it is to be it is up to me" Gertrude Tyne
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Old 03-17-2013, 10:34 AM
ru4cats ru4cats is offline
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Location: Montana
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Thanks for the smartphone app for Quest! I'll check into it. Unfortunately, I'm in Montana, and we have only 3 cities where Quest has labs. I need to go travel to one for my blood test, but it's O.K. because I get to take my sister-in-law out to lunch. It also makes for a nice drive, as I'm suffering from a severe case of cabin fever.
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