Before I started on Tysabri, I filled out a living will stating that if I got PML, I want to be let go. Some things are worse than death. So yeah, I find it kind of misleading to make it sound like some kind of victory when death rates go down.

And I know for a fact (not going to be more explicit here) that Biogen has been very deliberately trying to keep new cases of PML hush-hush. I think the ONLY reports or press releases they do on it are for the stock market, not for patients or their doctors. THAT makes me nervous!

I have been on Tysabri for about 2 1/2 years. I did not know that perhaps the risk of PML increases with the length of time I stay on this drug. When I was first diagnosed in 2003 I was put on Avonex and stayed on it for 3 years. I was then changed to Copaxone and only managed it for 1 month because of the injection site reactions. Tysabri became available (for the 2nd time) and I was advised of the PML risk. At the time I made the decision to try Tysabri, I weighed the risk and decided quality of life was most important to me. I did not want the slow debilitation that would be in my future with MS and my greatest fear was the effects the disease would ultimately have on my family. So I took the risk and I will take it again today even with the new limited knowledge that I gain.

I understand that money is an underlying factor for drug companies – doesn’t it have to be? Can they produce drugs and drug research for free? I don’t see a way around this. I will say, however, the the cost is certainly high and I could not afford it without insurance. My “Explanation of Benefits” that I receive from my insurance company shows that a single infusion of Tysabri costs in excess of $10,000. I do not know how much of that cost is for the drug itself and how much goes to the nurse and the infusion site. When I was taking Avonex, the cost was around $2500 for the drug. There will come a time when my insurance will no longer cover me and I’ll need to rely on Medicare and a supplemental insurance, if I can find one to cover me. If not, I will not be able to afford any treatment. That’s what is really scary! I think we need to look at all these things in their proper perspective.

When I read that someone says they don’t feel any different taking Tysabri, I must ask “are you still having all the symptoms you were having before? And, if you are, have your symptoms continued to progress”. I was never promised that I would get better by taking Tysabri. I was only encouraged that I would experience fewer exerbations – not that it would go away completely. And that appears to be true – at least for me. Further, on the up-side, I’m not suffering from the flu-like side effects I did with the other drugs. My life style is currently good. I am mobil, can play golf (not well), but I’m independent. The only ongoing MS condition that I can see continual progression in is my short -term memory loss, and that can also be caused by other factors, can’t it?

I’m not able to do the in-depth research that many of you have achieved, so I will have to rely on a balance of information that you researchers provide, my doctor’s advise, and my individual needs to make decisions by.

Chris, I can understand your quality of life issues, but please re-evaluate you decision to be med free. I strongly recommend that you see a new neurologist that specializes in MS (all neurologists are not equal in MS knowledge/practices). Your relapse-free may just be your current remission. Be aware that your condition with each relapse will worsen and you may lose mobility that you cannot regain. Doing nothing can be dangerous. Find a treatment that you can live with.

y

If you’d care to share with us the origins of your your interest in MS and Tysabri, I’m sure we’d all benefit from what seems to be your rather detailed knowledge.

Thanks!

I can’t tell you how earnestly I’d hoped I’d have a wonderful story to tell about how Tysabri had significantly reversed of some of my disability – I’d have been happy simply to report no progression – but, alas, I’m not among the lucky for whom the drug produced even minor miracles.

As we all know, the MS diagnosis covers a wide range of symptoms and comes in many “flavors.” It is often said that no course of MS is identical to another. Because no one drug is effective against all types, and some, like me, never find one that shows efficacy, I agree with those who believe MS is an umbrella for several disorders each with a different epidemiology. (And the “recovery” you described, Marty, could have been a spontaneous remission, and have nothing to do with the Tysabri.)

Therefore, the assumption that everyone with “MS” not on Tysabri is a) missing a miracle, 2) is risking further deterioration by missing one or 100 infusions of Tysabri, is ludicrous in general, unnecessarily insensitive in its general assumptions, and downright dangerous considering the drug’s flaw (i.e., a deadly brain infection). (And to whoever threw out the low “odds,” suggesting a risk of DYING is inconsequential – please.)

What’s also not in question is the greed and subterfuge (read “lies”) that corrupts the pharmaceutical industry in America, and Biogen is right at the vanguard of that zeitgeist. Their ABM’s seem to be anxious to get out, citing the extreme pressure to meet impossible goals.

If each of you speaking fervently in favor of this drug is NOT a shill for Biogen, you’re all doing a remarkably good imitation of one. You’ll have to forgive us skeptics, but as an investor (in general stocks) I keep up pretty well with what’s going on with Biogen and ELAN, and the comment suggesting Biogen is under no “pressure” to sell Tysabri because Avonex is their cash cow is disingenuous at best.

Biogen’s first dream of riches was their plan to have Tysabri prescribed with Avonex, but that dream evaporated after the first PML scare and it came back in 2005 with new restrictions that it be administered as a stand-alone.. Rebif is already causing serious erosion to Avonex’s revenues, and Avonex’s patent is set to expire in 2011. Long-held plans to tweak it in order to get the patent extended is probably Biogen’s next revenue disappointment, since the government wants to pass a new law against “evergreening,” which is the name for the way drug companies add something to alter a drug slightly and extend the patent, i.e., a way to keep the revenue flowing and cheat consumers from being able to obtain affordable generics. And now Tysabri’s under review – again – for PML, and even if it survives this review, it’s likely to come back with restrictions on usage length – more revenue loss – and the dug is already falling way short of revenue expectations and not likely to achieve anywhere near its projected revenues as long as the PML threat remains substantial. (What I’m not up to date on is the Icahn situation and who’s for sale and who’s suing who this week.)

(And, If any of you ARE being “pressured” or paid to monitor these conversations and purposefully mislead – shame on you.)

I advise anyone considering taking Tysabri (or any drug) to simply stay informed and be vigilant. Never take anyone’s “on-line” suggestion that there’s “nothing to be alarmed about”; there could be, not the least of which are drug companies that really don’t have the health and welfare of the trusting, often desperate patients who take their drugs on their list of priorities.

Have you looked into low dose naltrexone (LDN) while you’re on a holiday? Like I stated earlier, I was on Ty for 20 doses. I stopped six months ago and started LDN. Two months after starting it, I regained feeling throughout my body. I had an MRI done earlier this month and there was no disease progression. I’m not saying it’s a cure, but it may help keep the progression at bay. I have no plans on going back on Tysabri or any of the other CRABs. My neurologist at this time, agrees.

Secondly, I would like to apologise to others if my own comments seemed to represent something different, but I did want to attempt to address obvious falsehoods and I guess I was angry at the time of writing.

It’s false to claim that Biogen is benefiting from pushing Tysabri when they have a clear vested interest not to do so. Their other MS product (Avonex) is the most widely prescribed MS therapy. They own 100% of Avonex and just 50% of Tysabri. Clearly it’s in their interest, if anything, to hide the benefits of Tysabri. I’m not suggesting they’re doing that, but many others do indeed suspect that to be the case.

Biogen will loose substantial revenue for every patient that switches from Avonex to Tysabri. They receive the full revenue from Avonex but only receive 50% of the revenue from Tysabri. Elan Pharmaceuticals invented Tysabri and still own the other half of that product.

With respect to cost effectiveness and monies saved by healthcare, Tysabri is about twice as cheap from a cost effective point of view than all other MS therapy. This is despite the fact that Tysabri is now very slightly more expensive in real terms.

With Tysabri, massive monies are saved in healthcare costs associated with dealing with MS symptoms. It’s the only MS therapy approved in some nations where cost effectiveness is a major consideration, e.g. the UK. That should say something to you in terms of what is the better therapy for MS!

MS patients should also consider their own costs and the dangers associated with every MS relapse. MS is a v/serious business and should be managed aggressively. You do not want to allow yourself to progress.

People need to make their own choices, but let’s have an honest debate. Copaxone, Rebif, Avonex and Betaseron are 30% effective against MS. Tysabri is 70% effective, and higher. It is easier to use and has less other side effects. It’s effectiveness seems to make the difference between definite worsening overtime until you could become progressive, or with Tysabri, the likelihood that you will gain ground against the disease and may even recover from MS systems altogether.

OK, PML is scary. I would be very scared if exposed to Tysabri for greater than two years and was JCV positive. I would seriously be considering a drug holiday. Yet you cannot get PML without the JC virus, or a certain strain of this virus. There is a test coming in weeks that will be able to identify the 50% of people who cannot get PML. There is also talk of a vaccine and a treatment coming for PML. Tysabri seems very safe for at least the first two years.

Contrary to what has been said here earlier, I believe that Tysabri has had very bad press overall and that MS patients are loosing out big time because of that. That’s all I’m trying to say.

There is so much negative press about Tysabri and what would you expect in a modern day drug war. Tysabri is more effective than any other MS drug out there! It carries risks associted with PML but the other drugs carry risk associated with MS progression and othe SAEs. It is a shame that this drug has gotten such a black eye. I can not think of another instance where a doctor would push an inferior drug to a patient prior to treating with the most effective medication. If my doctor told me that he had a better drug but he was only only going to use it if the drug he was prescribing for me didn’t work and I would suffer something to a MS relaspe, I would be upset at his decision.

I understand that PML has taken the lives of 5 people and I pray for their families. However, there are many families benefiting from Tysabri treament due to the better quality of life for the patients. So, lets pressure Biogen to provide full disclosure on PML but focus on the 99.9% of people that the drug is actually helping.

Peter,

But, I’m moved to add how audacious – and silly – you sound supposing you’re privy to events in any one MS patient’s future.

Neither Avonex, Betaseron nor Tysabri did a thing to alter the course of my slow, chronic progressive “type” of MS.

By all means, continue on in a bubble if your livelihood depends on it, but refraining from insulting the intelligence of those who actually have MS, and have taken these drugs only to live with the consequences of their worthlessness for our particular type of MS every day, would be deeply appreciated.

If anything, Biogen could be accused of underselling the attributes of Tysabri. They certainly have a vested interest to do so because it’s clear they would be in much better financial shape if patients decided to use Avonex instead of Tysabri.

Tysabri is about twice as effective as other MS therapy. There is now mounting evidence that this may mean the difference between certain worsening versus potential recovery through natural healing. Tysabri tips the balance in favour of the natural healing process. It’s also relatively painless to administer and is once a month versus regular injections.

In my view, any MS patient not on Tysabri for at least 24 months is crazy. I would then look to continue if JC negative. Otherwise look to drug holiday, PML vaccine or effective PML treatment as options.

MS pills in the pipeline have a long way to go for many reasons.

P.