Say NO to drugs!?

[David1949]

Elliot, I am 5'-8" tall and weigh 150 pounds, so I'm nowhere near obese, but I have an appetite like a guy who weighs 250. It was a huge effort for me to last 6 months. If there had been even a slight improvement I would have stuck with the diet, but there was no improvement. So after 6 months I said screw it and ate that first slice of hot bread with cherry butter. Yummm !

[ElliotB]

I am not a doctor but as I have stated previously, IMHO, it is likely that 6 months is just not long enough for a fair trial of anything when it comes to MS. MS is a long term illness and any changes in its course is probably going to take place over the long term and will likely be small at best, especially over the short term. According to those who know a lot more than I do on the subject, the mylin takes 8 years to repair. How long should someone stick with a protocol that is thought to heal the mylin? That is obviously a personal choice. (Keep in mind that the fact that mylin can repair itself is a new concept, because, until recently, it was thought that that mylin could not be repaired.)

If you take a look at the recent success with regard to the Biotin trials, the period of time need to be on the Biotin is well beyond 6 months.

Ultimately, each case is different and there is no definitive 'right' way to do anything. When it comes to the Wahls protocol, for those that follow the entire protocol over a long period of time, most do get rewarded with beneficial results.

Interestingly, Teva reports that those who take and stay on Copaxone for 10 years or more do the best on it. Whether this is just sales talk or not, who knows. I will let you know 8 years from now. But I do know that many give up on the drug way to soon.

[David1949]

Elliot I would not discourage anyone from taking Copaxone if it helps them, but it is not for PPMS. Their literature says; "COPAXONE® is indicated for the treatment of patients with relapsing forms of multiple sclerosis."
https://www.copaxone.com/about-copaxone

[MSbro]

MS, as I'm sure you know by now, is a different disease for each person. It effects people in many different ways, the symptoms differ and vary hugely and what treatment works for one patient does absolutely nothing for the next!

You'll read that how some people will do extremely well using a drug, diet, exercise, natural path supplement or CCSVI while others who may try the same path go continually downhill.

So you ask, should I take a drug nor not. This is a question that cannot be answered easily, if at all. You consult with your doctor, read as much info as you can (be careful what you read and ensure you know the source is reliable and/or accurate) and then decide which way you think you should go.

And beware of anyone who insists their treatment is the best for you and will definitely work. MS is one of the most frustrating diseases to treat. After 70 years of research their is still no known cause and certainly no cure. So how is anyone supposed to know what will work and what won't?

[1eye]

After 70 years of research their is still no known cause and certainly no cure. So how is anyone supposed to know what will work and what won't?

A lot of money is spent, often based on EAE results on mice, because of some very very high prices which are paid for some "MS drugs". This spending must have results, so increasingly higher prices prevail. Increasingly larger sums of money are spent marketing these drugs.

The ideal drug would cure MS with only one use. The price would have to be astronomically high to pay for its development. The whole medicinal model is broken.

If, however, you can guarantee addiction and eventual death, the model works fine.

See http://www.thisisms.com/forum/chronic-c ... 26930.html Every day something new is learned. We may even find a good treatment in a fecal transplant. There is evidence this kind of thing helps asthma, CDiff, autism, MS, obesity, bowel disorders. Could be interesting.

[centenarian100]

The ideal drug would cure MS with only one use. The price would have to be astronomically high to pay for its development. The whole medicinal model is broken

Actually, any pharmaceutical company that could develop a multiple sclerosis cure would make a killing.

The new Hepatitis C drugs are ~ $94,500 for a 12-week course; presuming the company could charge this amount (probably much more in reality), they could easily cover their costs the and costs of many failed projects. There are about 300,000 people in the united states with multiple sclerosis, so this drug would be expected to make $28,350,000,000 immediately. This would beat the highest peak grossing year for any drug even made (the current record is lipitor, 13 billion in 2006). There are of course roughly 2.3 million people with multiple sclerosis worldwide, so they could make even more than this, and they could continue to make money with new diagnoses.

They wouldn't even need a cure. Any drug that could obtain even a 50% market share would be insanely profitable.

[1eye]

The ideal drug would cure MS with only one use. The price would have to be astronomically high to pay for its development. The whole medicinal model is broken

Actually, any pharmaceutical company that could develop a multiple sclerosis cure would make a killing.

The new Hepatitis C drugs are ~ $94,500 for a 12-week course; presuming the company could charge this amount (probably much more in reality), they could easily cover their costs the and costs of many failed projects. There are about 300,000 people in the united states with multiple sclerosis, so this drug would be expected to make $28,350,000,000 immediately.

I'm sorry, but all the king's horses and all the king's men cannot put Iraq back together again, either. The model is broken, and the kind of thinking that can easily dream up that kind of money out of thin air is, too. The new hepatitis C drugs, are they a cure? I know someone who took them in a trial, and yes, they seem to be, for that disease. He may have even been able to pay that kind of extortion, if he hadn't been cured already for free, but most can't, and I don't want to live in a world where poverty means you automatically die. Drug companies have been getting some peoples' insurance companies to pony up for MS drugs, on the say so of a lot of neurologists who have got fairly desperate MS patients to try them.

The lure of the big payday has brought a lot of competition, so the day of CRAB drugs looks to be getting shorter. Problem is, a lot of the $15B/year paid by MS sufferers has come from insurance companies who don't really want to go bankrupt. I guess some people think there is just an endless supply of easy money, but I think a lot of pwMS already can't afford to pay.

Drug companies are already overspending their research budgets, and think they will always be able to recover costs through the old pay-or-you-die method of extorting the public. But the goose that laid that golden egg is cooked and won't go around. That's why the national trillions cannot be paid indefinitely by either arms manufacturer or drug company profits.

Fortunately things are looking up in the area of fecal transplants, knowledge continues to grow, without depending on the secrecy of any companies, and some doctors still contribute to healing technologies out of sheer altruism. I would say the model of intellectual property is limited in geography and in usefulness to the poor people of this world.

[MSbro]

Drug companies are already overspending their research budgets, and think they will always be able to recover costs through the old pay-or-you-die method of extorting the public.

Actually, the biggest cost by far for drug companies is marketing and sales. Most of the grass roots research done on drugs comes from the universities and when they discover something "promising", the drug company buys the patent and then goes ahead with the trials (very expensive as well)

But the cost of these drugs if and when they get approved, is astronomical to say the least!

[1eye]

Actually, the biggest cost by far for drug companies is marketing and sales. Most of the grass roots research done on drugs comes from the universities and when they discover something "promising", the drug company buys the patent and then goes ahead with the trials (very expensive as well)

But the cost of these drugs if and when they get approved, is astronomical to say the least!

Well I guess I was using the term rather loosely...

OK, I see. So these trials actually come out of sales budgets. I guess that makes a metaphysical/apothecary kind of sense.

"Plagiarize, plagiarize, plagiarize! Only be sure, always to call it, please -- 'research'." - Nicolai Yvanovitch Lobachevski, by Tom Lehrer

[MSbro]

OK, I see. So these trials actually come out of sales budgets. I guess that makes a metaphysical/apothecary kind of sense.

For years the drug companies told us the huge cost of their drugs was due to the cost of all the research. Then former drug company execs started to write articles stating that the big cost, far surpassing research, was the marketing and sales expenses to get a drug approved and to market.

Many of these companies will try and justify the extremely high cost of their drugs by stating how much their research costs are. But it's the marketing/sales expenses that are the biggies but by shifting the market share by just a percent or two on one drug will translate into millions and millions of additional revenue. Hence the no expense barred for sales attitude is quite prevalent.

[centenarian100]

I'm sorry, but all the king's horses and all the king's men cannot put Iraq back together again, either. The model is broken, and the kind of thinking that can easily dream up that kind of money out of thin air is, too. The new hepatitis C drugs, are they a cure? I know someone who took them in a trial, and yes, they seem to be, for that disease. He may have even been able to pay that kind of extortion, if he hadn't been cured already for free, but most can't, and I don't want to live in a world where poverty means you automatically die. Drug companies have been getting some peoples' insurance companies to pony up for MS drugs, on the say so of a lot of neurologists who have got fairly desperate MS patients to try them.

The lure of the big payday has brought a lot of competition, so the day of CRAB drugs looks to be getting shorter. Problem is, a lot of the $15B/year paid by MS sufferers has come from insurance companies who don't really want to go bankrupt. I guess some people think there is just an endless supply of easy money, but I think a lot of pwMS already can't afford to pay.

Drug companies are already overspending their research budgets, and think they will always be able to recover costs through the old pay-or-you-die method of extorting the public. But the goose that laid that golden egg is cooked and won't go around. That's why the national trillions cannot be paid indefinitely by either arms manufacturer or drug company profits.

Fortunately things are looking up in the area of fecal transplants, knowledge continues to grow, without depending on the secrecy of any companies, and some doctors still contribute to healing technologies out of sheer altruism. I would say the model of intellectual property is limited in geography and in usefulness to the poor people of this world.

I agree with you. We should have nationalized health care, and the government should aggressively negotiate for the cost of drugs. European countries have lower drug costs for this reason. If the drug company does not agree to a reasonable price, the government will simply refuse to cover the drug. We should also make drug companies do head to head trials against available unbranded alternatives (i.e. test your multiple sclerosis drug against azathioprine, cellcept, arava, or rituxan). The only problem with this is some people would get upset when the drug they desire is not covered.

-Cent

[1eye]

I agree with you. We should have nationalized health care, and the government should aggressively negotiate for the cost of drugs. European countries have lower drug costs for this reason. If the drug company does not agree to a reasonable price, the government will simply refuse to cover the drug. We should also make drug companies do head to head trials against available unbranded alternatives (i.e. test your multiple sclerosis drug against azathioprine, cellcept, arava, or rituxan). The only problem with this is some people would get upset when the drug they desire is not covered.

I think if we don't get a handle on it, drug companies will rule the world. I am always astounded at how Americans actually fear their own government. It is a great tool for the use of the people to use to get what they want. Perhaps Americans are not the ones who are afraid of it, but it's hard to tell the lobbyists from the people being lobbied.

I also think that PACs and lobbying are a grave threat to democracy. Government should not be for sale.

[centenarian100]

I think if we don't get a handle on it, drug companies will rule the world. I am always astounded at how Americans actually fear their own government. It is a great tool for the use of the people to use to get what they want. Perhaps Americans are not the ones who are afraid of it, but it's hard to tell the lobbyists from the people being lobbied.

I also think that PACs and lobbying are a grave threat to democracy. Government should not be for sale.

I agree with you; The system is a complete joke. The idea that a corporation can contribute to a political candidate who potentially influences the fate of the company is absurd and an obvious conflict of interest.