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-   -   Anyone read this study? (https://www.neurotalk.org/multiple-sclerosis/155808-read-study.html)

daisy.girl 08-22-2011 05:10 PM

Anyone read this study?
 
It is from WebMD
http://www.webmd.com/multiple-sclero...wnl_mls_081911

I was flabbergasted!! Makes me wonder why anyone would put ourselves through the side effects, and not knowing the long-term effects for an average of one or two quality month in our LIFETIME!!


For example, the study found that on average, patients taking Copaxone for 10 years could expect the drug to add less than one quality-adjusted month to their lives compared to patients who were only getting supportive therapy to control symptoms.

Patients taking Avonex, Betaseron, and Rebif gained about two quality-adjusted months compared to those getting supportive care.

The study also looked at how likely the drugs were to prevent relapses.

Those taking disease-modifying drugs spent on average nearly six out of 10 years with no relapses, compared to five years with no relapses for those who did not take disease-modifying drugs.

However, the effectiveness varied significantly among individuals, with some experiencing double the improvements and being able to live independently and prolong their employment and others not getting any meaningful effect.

Kitty 08-22-2011 05:32 PM

The DMD's are just like the disease itself. Affects each person differently. There is no one size fits all when it comes to MS or the MS meds. That's exactly why I wish the Neuros would listen to us and quit insisting that we must be on a DMD. It's a crap-shoot and they know it.

kicker 08-22-2011 06:29 PM

I'm PPMS, there are no meds for me, but tried Rebif in the early years. It decreased my quality of life, so quit. Glad I did. Doctors want to feel like they're doing something, anything and think we should try some D MD.. Maybe in some ways we're smarter.

barb02 08-22-2011 06:35 PM

Interesting article.

Jules A 08-22-2011 08:14 PM

As someone who believes in using a dmd if possible I found these statements incongruent with the overall tone of the article and people's reactions. The cost is ridiculous and that is what this article is about more than the effectiveness of the medication but until something better and cheaper comes along I'm sticking myself every day.

Please keep in mind the web md article about this study in Neurology Journal which actually included patients with RRMS and SPMS was summarized by someone for webmd it is not the actual article which stated:

"Compared to treating patients with all levels of disease, starting DMT earlier was associated with a lower (more favorable) incremental cost-effectiveness ratio compared to initiating treatment at any disease state. Our sensitivity analyses reemphasize the need for early DMT initiation and suggest that starting DMT earlier, at EDSS 2 or before, could be more cost-effective than starting DMT for patients with MS at later stages of the disease. One potential reason for this result is that starting DMT earlier may defer the substantial costs associated with late-stage MS and disability."


"While evidence suggests that these drugs slow MS progression and reduce the frequency of relapses, these therapies are characterized by significant side effects and high costs, representing great economic burden to patients, as well as public and private payers."

http://www.neurology.org/content/77/...a-58efe085a0fb

From the webmd article:

"We know, unequivocally, that these drugs slow the progression of the disease and slow the course of the disease," says Karen Blitz-Shabbir, MD, director of multiple sclerosis care center at North Shore-LIJ Glen Cove Hospital in New York. When I first started training, people were hospitalized all the time and did much worse than they do now," she says, "So we know for sure these drugs are good."

"However, the effectiveness varied significantly among individuals, with some experiencing double the improvements and being able to live independently and prolong their employment and others not getting any meaningful effect."

"Overall, health outcomes for patients on the disease-modifying drugs appeared to be only slightly better than for those on supportive care."

"The cost-effectiveness also improved when people were started on the drugs early in the course of their disease, when the medications could still prevent permanent nerve damage, perhaps keeping them healthier, longer."

"Kathleen A. Smyth, PhD, co-director of the Neurological Outcomes Center and associate professor of medicine at Case Western Reserve University who wrote an editorial that accompanied the study, says she thinks the message of the study isn't that patients shouldn't be treated with the drugs. "It's that we have to get drug prices under control in this country."

missj 08-22-2011 09:05 PM

Jules
thankyou. I too will continue to stick my self and pay the outrageously over priced amounts for these drugs.

If the cost of the drug was $.25 per month, then the cost/benefit ratio would be skewed in the other direction.

I am often reminded of "The Perfect Solution Fallacy"

Dejibo 08-23-2011 08:16 AM

I also think that we need to consider how far meds and medicine has come since the days of dunking folks in a bath tub of hot water to test them. With the MRI and the CT scanner, and baclofen and Tizanidine and ativan...we have greatly improved the lives of MS patients with or without DMDs. LDN alone has helped so many. We know better, so we eat better. We found thru trial and error that not only does ativan help with anxiety, but it relaxes that MS hug muscle. We have learned that stress is not our friend. So, I think MS patients do far better over all after a COMBO of many things, not just DMDS.

What the big pharma is doing by charging $3,600 a month for a one dollar pill is shameful. just shameful. They say its the research and development value and not the actual production value.

Did you know that 70% of ALL antibiotics are given to our food, and not to humans? So...when you really dig deeper you see pharma wants money. I dont think they would hide a cure, but I also dont think they are digging for one either.

Scary stuff.

Harry Z 08-23-2011 10:50 AM

Quote:

What the big pharma is doing by charging $3,600 a month for a one dollar pill is shameful. just shameful. They say its the research and development value and not the actual production value.
Contrary to what big pharma would like you to think, the marketing and sales costs they have far over-shadow their development and research expenses. Most of the CRABs have been out almost 20 years now and their prices certainly aren't going down....they have constantly gone up and are determined by what the "market will bear."

When Tysabri got approved, the price of the CRABs went up because even with an increase, they were still below the horrible cost of Tysabri. (drug plus infusion) The makers saw a great opportunity to cash in and they did. Their own costs certainly didn't go up!

Yep, big pharma has made a killing off MS patients for years with drugs that provide minimal benefits for most who use them. And that won't change for some time to come.

Harry

SallyC 08-23-2011 11:04 AM

Right on Harry!!!:)

EddieF 08-24-2011 05:54 PM

I know Copaxone, Tysabri, Ampyra & testosterone added a ---- more then 3 good months of life. I was ready to die/had no strength early 2007. 41 laps to go and i'll have complete 2011 for 2011. So there's 48 months & counting.


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