Suspected PML Cases For Biogen/Elan MS Drug (Tysabri) Not Alarming

Thanks Mandy,

Stumbling upon this active investment message board, and reading what is primarily some rather intelligent discussion, was eye-opening for certain.  And I thought that my eyes were open already.  The short quote I chose was just a fraction of the words thrown around regarding MS patients.

It was disappointing to actually be witness to a few MS patients who almost struck me as being "double agents" in a way.  A couple of these folks I had doubts about anyway, but this just reinforced the amount of effort which is being put into providing "accurate" information to us out here.

And, the topic of online tools and forums such as PatientsLikeMe actually could be made into very many topics.  I've got several things bouncing around in my head related to that.  It's hard to know where exactly to start, but I guess I already have.

BTW, it was almost like pulling teeth to get a look at that report.  Their blog (which has been 'edited') originally stated something like - "if you would like to receive a copy of the TysabriSentimentReport, please contact LoriS." - now has several live links to the downloadable pdf with the previous statement gone. 

Of course, they wanted to know if I was media, reporter, patient, physician, pharma, etc.  Then when I was provided the link (after I had already discovered that they had 'edited' their blog) it was reiterated that I needed permission to use ANY of the information within.

There is so much more to say...but it will have to wait for another day.

Hey Linda,

You're correct!!  I did "stumble" upon the Investor site(s) from your blog.  Hey, did you know that you're mildly famous there?

I'm curious to see if ANYTHING comes from the SVP in regards to your particular situation (and many others just like you).  So many times 'they' talk about the approximately $30K cost for Tysabri itself as being so much more economical in the long run (if disability is halted and possibly reversed, and if future care expenses are avoided). 

But, I don't know, if (some) insurance companies are shelling out up to $92,482 each year for Tysabri infusions, then this is definitely not an ECONOMICAL choice. 

You know what is say?  Let the backlash begin!!!! 

Yes, I've been counter "monitoring" that site for well over a year and I AM mildly infamous there, which isn't necessarily viewed as a "bad" thing, IMHO.  I believe we are ALL motivated by that which either makes us uncomfortable OR that which brings us pleasure (whether financial, social, spiritual, etc.).  And we ALL have motivations (conscious and unconscious) to MANIPULATE (which is also NOT a "bad" word) our surroundings to create comfort/avoid discomfort.

Although not easily noted in my written ramblings, I was once tested and told I had a far above average IQ as well as the fact I have had MANY unusual life experiences and learning situations.  I may not always disclose what I "know" directly, but I am always AWARE of what I know.  And I have been known to take advantage of that old saying, "war creates strange bed fellows"...always keeping one eye open while in "bed" and often only pretending to sleep!!!!

I believe we are on the same page here, Lisa...cryptic speak or not.  LOL

Linda D.

Shauna,

I, too, like to read the full version of the published studies when I can.  (btw, did you know that it's very easy to get 'media' access to JAMA and NEJM?)  It's nice to get more than the abstract to read.

Lack of full disclosure and refusal to answer (what should be) easy questions makes me antsy too. 

Regarding MS forums, I prefer the honesty and humor which is found in blogs.  On a discussion board, it's too common to get a group mentality going where a couple of folks fuel the fire on whatever the topic is.  Too much manipulation is possible, imho.

I try to provide accurate information and links to sources for further investigation.  But sometimes that's not what 'patients' want to hear.  What I find interesting is how much doctor bashing goes on.  Sometimes we really have to trust the scientific process and the physicians who have our best interests in mind.  That's a topic for another day.

Thanks for coming by Shauna!!!  And keep blogging, girl.  You are one of those who help keep me inspired.

YIPPEE for the intelligent and educated CAREGIVERS!!!!!!

Tricia, your husband is so fortunate to have you as his wife, his love, and his caregiver.  That's a good point regarding having one member of family take a proactive role in understanding the disease process and the many options for treatment.

I have absolutely no doubt that there are patients who benefit from Tysabri.  Your husband is a perfect example of one of those patients for whom progression has been halted.  Wouldn't it be nice to get more of him back (disability wise) in the coming years?  That's what we can hope for.

Thank you for being the knowledge sponge in your family.  We all need one of those. 

I read about Tysabrias as I do everything else connected to MS.

But just for me personally I think a risk of even 1 in 1,000 is too big for me.

and what we have at least 3 cases after only several hundreds of people taking it?

I would have to be totally nonfunctional to accept the current risks as I have read about it.

My relapsing remitting MS is not so bad these days.  I even stopped taking Rebif after taking Copoxone for years.   And you know I don't feel any worse....actually I feel better not feeling like I've got a flu all the time.

Liz,

That's great that your MS seems to be stable right now.  Awesome.  There certainly are people who manage their MS through nutrition and exercise alone. 

I'm not sure of the updated statistics off the top of my head.  But so far, it has turned out that the risk is much lower than 1 in 1000.  Not to try to convince you to being using Tysabri immediately, but to try to lessen your fear just a little.

Thanks for your comment, and it's nice to meet you Liz.  Please feel free to comment any time.

I read about Tysabrias as I do everything else connected to MS.

But just for me personally I think a risk of even 1 in 1,000 is too big for me.

and what we have at least 3 cases after only several hundreds of people taking it?

I would have to be totally nonfunctional to accept the current risks as I have read about it.

My relapsing remitting MS is not so bad these days.  I even stopped taking Rebif after taking Copoxone for years.   And you know I don't feel any worse....actually I feel better not feeling like I've got a flu all the time.

I'm new to this site, just as of today. My neurologist was really pushing tysabri last month. My hubby and I had researched on it prior to this and we agreed together that the risks weren't worth it. I also have lupus and kidney desease and am more sensitive to side effects - even copaxone gives me some problems. So, I won't do tysabri, the risk isn't worth it.

Willowwoman,

First, let me welcome you to Health Central and MS Central.  There really are some very nice folks hanging around here.

Second, I can understand your trepidation.  Having MS, lupus, and kidney disease certainly does complicate matters doesn't it?  Do you think that the meds you take for lupus help to keep your MS in check? 

I'm just curious because I have a couple of relatives with lupus.  One takes prednisone as one of her drugs and another takes methotrexate as one of her drugs.  For my RA, I take methotrexate which my neuro said would also help with the MS.  Fortunately, copaxone seems to be working for me and I'll stick with it until it's obvious I need to switch.

Choosing a strong medication such as Tysabri really takes quite a bit of consideration.  That is until the day (hypothetically) that Tysabri becomes the most trusted of the DMDs and is used first for all new patients.  Don't know that that would ever happen, but just hypothesizing.

I hope that your MS behaves itself and that you have a great weekend.  Thanks for stopping by and introducing yourself.  Hope to see you again soon.

right now i'm not on anything for lupus, prednisone affects me strangely, and methotrexate would work for both lupus and MS, but can be toxic to kidneys so I'm not allowed. I may be going on cyclospirine in February which my neuro said will cover both. I don't think tysabri will ever be first line because it has a known risk of death. MS won't kill you, so why take something that can? Two recent deaths from it is 2 too many.

Lanette,

I know that it's a tough decision, especially after you've 'failed' other DMD therapies.  In Tysabri's defense, it appears that Elan has discovered a way to keep PML from being deadly if detected early enough.

There certainly are plenty of patients who are using Tysabri and absolutely LOVE IT.  Some folks experience very real side-effects (just read up on BrainCheese's experience on her blog) and some seem to have none.  It does seem to work better when used earlier in the disease. 

And I know of a local woman who is chair-bound, started using Tysabri last year, and now is able to stand for just a little while and walk on a treadmill if held in a sling contraption.  She is thrilled to be using it.  My neuro has some patients on it; and when I asked him in Sept if the 2 european PML cases changed his opinion on using it, he strongly said, "No."  Well, ok then.

Some opinions I've read say that if Tysabri were used as a first-line DMD, then the risk of PML diminishes greatly.  There is some restriction in the promotion of Tysabri as related to the label and the FDA allowance to put it back on the market in 2006.  I haven't fully researched this so I can't speak with authority.

I wish I knew more.  Sorry.  But be sure you give that new hubby lots of hugs and kisses, ok?  You guys look great together.