Dirty Medicine

[centenarian100]

Yes when it comes to my health I am the judge and jury.

That is true. You are competent adult and have the right to refuse standard medical care for promyelocytic leukemia. If you become obtunded due to blood loss or sepsis, I will stand by you and tell the doctors, "Back off! This woman does not want IV fluids, transfusions, antipyrexics, or antibiotics, and as her health care power of attorney, I insist on you discharging her AMA!"

I will then proceed to shove apricot seeds down your bleeding mouth and rub baking powder all over your skin while praying to the great purple dancing beaver deity.

http://webspace.webring.com/people/xm/m ... ancing.htm

[newmser]

The FDA can talk about side effects in closed meetings--but if the prescribing doctor and patient are not made aware of the true risks, peoples' lives are ruined.

To look up any medications and after market side effects, check out eHealthme.com

All FDA advisory panel hearings are open to the public - they are not closed meetings. Prescribing doctors were made aware of the risks after Gilenya was approved (and any good doctor should investigate for him or herself, anyway) . Read the REMS document Novartis issued that you linked.

Shortly after it was approved, my own neurologist informed me of all the monitoring and the potential side effects of Gilyena for those going on it.

eHealthme :

We use novel algorithms to continuously analyze data from FDA and social media.
* Some reports may have incomplete information.

** Reports from social media are used.

Novel algorithms, social media, and anonymous internet reporting. I'd be very skeptical of any information I culled from this site.

e pluribus unum

[Kronk]

I will then proceed to shove apricot seeds down your bleeding mouth and rub baking powder all over your skin while praying to the great purple dancing beaver deity.

Bwahahahahahahahahahaha!

Honestly Cent I and likely many others appreciate your facts and figures but i believe they are wasted on many individuals who have closed there mind to other alternatives.
People you need to keep you opinions and judgments flexible in a disease like MS. It seems people develop a theory and spend there time on this site defending it for all there worth, shooting holes in opposing theories and completely shutting out valuable information that challenges it. I personally believe MS is not one condition with the neurological system but several with "similar" symptoms. Honestly no 2 people seem to have the same course with MS, meds effectiveness is greatly varied, and its prevalence seems far too high. Perhaps in a few decades they will discover there are several "cures" CCSVI, Diet, Endorphin modifying drugs, etc. etc.

[centenarian100]

Honestly no 2 people seem to have the same course with MS, meds effectiveness is greatly varied, and its prevalence seems far too high. Perhaps in a few decades they will discover there are several "cures" CCSVI, Diet, Endorphin modifying drugs, etc. etc.

perhaps

[HarryZ]

It seems people develop a theory and spend there time on this site defending it for all there worth, shooting holes in opposing theories and completely shutting out valuable information that challenges it.

How very true and sadly, the same can be said for the established world of MS medicine!

The auto-immune disease theory has been pretty much the absolute focus of MS researchers and certainly the drug industry for several decades. Every medication developed has centered on preventing the patient's immune system from functioning properly. This is based on the thought that the immune system has gone rogue and is responsible for causing the disease.

In the past 10 years or so, other researches have cast doubt on this theory but most other ideas are usually attacked by the established group. Seldom, if ever, do you see co-operation among the MS scientists in an attempt to pool resources to find the answer to this lousy disease.

But like you said, perhaps in a few years we may see the answer and I feel that it will be stumbled upon rather than planned.

[centenarian100]

How very true and sadly, the same can be said for the established world of MS medicine!

The auto-immune disease theory has been pretty much the absolute focus of MS researchers and certainly the drug industry for several decades. Every medication developed has centered on preventing the patient's immune system from functioning properly. This is based on the thought that the immune system has gone rogue and is responsible for causing the disease

Well...there is fairly strong evidence that the immune system is at least part of the primary cause of multiple sclerosis

For instance...

1) The relapsing form of MS is paroxysmal with spontaneous remissions, similar to other autoimmune diseases

2) Most MS lesions have immune cells in pathological specimens (described extensively by lucchinetti and others)

3) Specific antigenic targets have been identified in MS-for instance anti-myelin associated glycoprotein (MAG), anti-myelin oligodendrocyte glycoprotein, and now anti KIR4.1 ( for instnace: http://www.ncbi.nlm.nih.gov/pubmed/2278 ... t=Abstract)

4) Various genetic loci have been correlated with risk of MS. For instance, homozygosity at HLA DR B1 1501 confers a roughly 7 fold increased risk. This has been duplicated in many studies. In the whole genome analyses done at UCSF and other areas, a majority of the genes associated with MS were known to relate to the immune system.

5) oligoclonal bands are identifiable in the cerebrospinal fluid but not the the serum in roughly 90% of patients with MS.

6) relapsing forms of MS respond to immune suppressing treatment. The success of tysabri suggests that the peripheral immune system of of great importance in MS.

7) Changes in the peripheral immune system have been reported in MS, mostly associated with an increase in Th1 response and decrease in Th2 response.


I don't mean to say that the other arenas shouldn't be looked at. I just don't like how you imply that the scientists have gone stark-raving mad. Obviously, the failure of immunosuppressive drug in progressive MS strongly suggests that there an non-immunological aspects of the disease

[cheerleader]

Are you really that gullible Cheer? No offense...but do you have any skepticism for what you read online?

Gosh, Centenarian...thank goodness you're here to correct my ways!! I could be mislead by a website which has
been used by 100+ peer-reviewed medical journals, including:
The Lancet, Mayo Clinic Proceedings, and the Annals of Pharmacology.
http://www.ehealthme.com/aboutus/#citation

eHealthMe is a platform to study healthcare big data in real world and in real time. We use novel algorithms to continuously analyze data from FDA and social media. The results are readily available to health care professionals and consumers (their testimonials). On eHealthMe, we believe that collaboratively we can transform our health care system to be more transparent, safer, and less expensive.
eHealthMe is in Mountain View, CA and founded by Johnson Chen, previously a senior Deloitte healthcare consultant. eHealthMe is an independent company and privately owned. We are not representatives of pharmaceutical companies nor do we have any vested interest in your method of healthcare or drug choices.
We have worked with universities, institutions, and firms including: IBM, London Health Science Centre, Mayo Clinic, Northwestern University, VA, Yahoo!.

Gosh...don't click on this crazy website, folks! You might be lead astray, along with gullible cheer!!
Well, here's more on this wacko site I'm linking to....

The site’s tagline encapsulates eHealthMe’s mission: Big healthcare data for ordinary people.

“The FDA offers a lot of data but it’s only data. They don’t analyze it so it’s useless for regular people. They sometimes publish some findings, but only for really serious outcomes. There’s isn’t much about the efficacy of drugs or less serious side-effects,” says Chen.
“We also track how the doctors and researchers are using our website. There have been close to 100 published medical papers that have used our EHealthMe results in their references. And our results have been referenced in well-respected medical publications like the Mayo Clinic proceedings. We have particularly good information about drug interactions and side effects in rare organ disease.”

Doctors who use the site say they often check eHealthMe before they write a prescription. “We offer information on eHealthMe that doctors will likely not be able to find it in the literature.”

Doctors and patients often use the site collaboratively. “If they have a side-effect or symptom they want to discuss with their doctor, they check eHealthMe before their visits to get evidence and reports to back up their findings.”

http://www.canhealth.com/tfdnews0850.html

I think it's probably much better if people just forget about side effects, take their meds, no questions asked!!
Won't be linking to this site again...never mind, carry on! I'm going for a jog with my hubby and dog, wearing my tinfoil hat!
cheer

[want2bike]

There are two ways to be fooled. One is to believe what isn't true: the other is to refuse to believe what is true. My Grandmother use to tell me "You can lead a horse to water but you can't make him drink". I have excellent health so what I am doing is working.

[HappyPoet]

Well, well, well... Centenarian is back causing trouble again, but this time she's gone too far and has ruined whatever decent reputation she might have been able to salvage. Her out-of-control emotions and attacks on others show that she has no professionalism nor class.

I won't bother reading her posts anymore because she enjoys demeaning people who don't agree with her more than she enjoys helping people.

For those who will continue to read her posts, my advice is not to communicate with her until she gets control over her emotions; otherwise, you might be the next person she attacks.

Her bullying tactics and mean comments remind me of NJ Gov Chris Christie. She doesn't seem to realize how sleazy her behavior has become, but maybe she can blame her MS for her emotional, low-class posts.

[centenarian100]

Cheer: I don't mean to say the website is completely useless. I just questioned the data on PML in tysabri for the reasons I posted.

[centenarian100]

Well, well, well... Centenarian is back causing trouble again, but this time she's gone too far and has ruined whatever decent reputation she might have been able to salvage. Her out-of-control emotions and attacks on others show that she has no professionalism nor class.

Sheesh. I can't post my opinions?

This must be a cultural thing. I live in the United States where free and open speech is valued.

I criticized cheer because she trashed the FDA and posted completely false information. I know that her claims are false because I was alive in 2010 and read the package insert of gilenya at that time.

If I don't respond, people who are newly diagnosed with MS might believe her (as she comes off as fairly intelligent an well read) and may wrongly lose confidence in the FDA and pharmaceuticals.

[centenarian100]

Ok wait.

You are right happy poet in that I should attack the ideas of people with whom I disagree rather than the people themselves.

Will that being said, I apologize to cheer and bike.

[newmser]

Cheer: I don't mean to say the website is completely useless. I just questioned the data on PML in tysabri for the reasons I posted.

Interesting that you should use that word. At least one other user of thisisms doesn't think highly of the numbers obtained from ehealthme:

http://www.thisisms.com/forum/post21101 ... me#p211019

The statistics supplied by the ehealthme site are almost useless. They don't go into cause of death, which is the key to the matter. We know that there have been roughly 360 patient deaths attributed to PML in people taking Tysabri. The 665 number includes these, but apparently about 300 more deaths from who knows what reason? No indication of what these "side effects" might be is given whatsoever. Certainly there may be infections, cancers, etc., but it's impossible to know if these "side effects" are actually attributable to Tysabri or to the vicissitudes of human life.

Not sure what the mortality rate would be given a random sample of 90,000 people followed for 5+ years, but I am sure the deaths would number In the dozens, if not hundreds. One must never forget that life is terminal disease.

A little critical thinking goes along way, folks…

I'm no fan of big Pharma, but the fact is that Tysabri has dramatically increased the quality of life for a majority of patients taking it. Not that the drug is without its problems, as the PML threat is quite troubling. But careful patient monitoring for JC virus status seems to be helping the situation, and the most recent studies do seem to indicate that the drug may even limit disease progression.

We definitely need better therapies, but blindly using numbers like the ones provided by ehealthme does a disservice to both sides of the argument. Without specifics, the numbers are meaningless…

Here's a very nice presentation on the PML risk associated with T.
http://www.slideshare.net/gavingiovanno ... -june-2013

caveat emptor indeed

[centenarian100]

These are possible explanations for the discrepancy between the ehealthme data and the touch program data:

1) biogen is intentionally forging statistics to make their drug look less dangerous so that they can make more money
2) ehealthme is counting single instances of PML multiple times (i.e. if a single patient or family posts on multiple social networks or reports it multiple times
3) jokers are posting false reports on ehealthme for the hell of it
4) CCSVI proponents in Canada are posting false reports on ehealthme.

All of these are possibilities, but the idea that the touch program captures a lower proportion of PML cases than ehealthme is completely absurd

[HappyPoet]

C, I was told you apologized, so I came to read it. Your words come across as lame and insincere, and I can easily see why your apology wasn't accepted. Some people here think you're a DMD sales rep who, like many before you, got tripped up on your own lies and ego. I think you'll find this sales-rep label impossible to remove because using trickery against real MS patients is vile and despicable behavior.