Why They Should Treat ALL Phenotypes

[1eye]

Sure treat away. But we should find out "why" it doesn't work for everybody. We should not rest on our laurels. I do not think doctors should ever refuse treatment to anyone, especially on personal opinion. We should find something that does work for everyone. Just because you can fix one person doesn't help any of the others, necessarily.

Edison found the tungsten filament after he had tried a great many other things -- even cheese.

[frodo]

Sure treat away. But we should find out "why" it doesn't work for everybody. We should not rest on our laurels. I do not think doctors should ever refuse treatment to anyone, especially on personal opinion. We should find something that does work for everyone. Just because you can fix one person doesn't help any of the others, necessarily.

Edison found the tungsten filament after he had tried a great many other things -- even cheese.

Well, I think we have reached an agreement. Of course that would be the best. And for sure, research must go on until MS is fully understood.

[centenarian100]

I make no demands. My bed is made. fty-720 probably works better in the original 'nostrum' form.

Again, fingolimod is ineffective in progressive multiple sclerosis. There is a randomized trial demonstrating this. There really is no need for debate or speculation

You seem to have a thing about Central vs Peripheral. Why not try it? If you had been a quadriplegic for 40 years, you might want to.

No. I don't want to receive ineffective medical treatments that could cause potentially serious side effects. I don't share your view.

Copaxone use was unilaterally withdrawn by the MS clinic

copaxone is also likely ineffective in progressive multiple sclerosis

source: http://www.ncbi.nlm.nih.gov/pubmed/17262850

There seems to be a general belief on the part of some MS neurologists that informed consent means "we informed the MS patient as much as they need to be informed. Any other information they may have is irrelevant, unnecessary, and they consent by default to anything we do for them or to them." Some even believe that since MS neurologists are all-knowing, they are the only ones who need to be informed or consent to anything. They believe that they are the final arbiters of what goes in a patient's mouth, or arm, or under their skin. That may or may not protect them from lawsuits, but it is not the case, nor should it be. But MS neurologists think they are gods, or at least gods where MS patients are concerned. I think that belief is what really matters to them, not whether drugs are effective. That, and how much money they make, through channels licit or not. MS patients are sub-human to them, nothing but puppets for their self-aggrandizement.

There is no doubt that doctors are often arrogant, but surely you don't think they are required to prescribe medications that they believe are ineffective, particularly when there are high quality randomized studies justifying this belief.

The MS population has been divided and conquered very successfully along actuarial lines. Effort is not spent on the generally older progressive patient. The trials on these patients have presumed conclusions because diagnose and adios is more lucrative for the ineffective specialist and costs the government less, while still keeping the presses rolling.

This is a very cynical view. Neurological diseases are very common, so it is highly unlikely that any conspiracy to undermine the development of effective treatments would ever exist. A physician himself is likely to get a neurological disease at some point (stroke, dementia, parkinsonism, head trauma, multiple sclerosis, epilepsy, and so forth). Also, a physician is likely to have many friends and family members with neurological diseases

[1eye]

Nobody said you or anyone else should ask for any treatment. But no doctor should refuse treatment to an informed person. Especially when the only justification is a few studies, whose results are usually lies, damned lies, and statistics, designed to save insurers money, and nothing more.

I am no more cynical than the people portrayed in the film "Dallas Buyers Club". Don't threaten me with PML, leukemia, etc. I will take my own risks. I already do, and don't try to convince me that any of the neurologists I have ever met give a flying truck about me.

There is not a conspiracy unless there is. In the main, there is just a lack of concern, but some doctors actually go out of their way, to the point of hiring lawyers, and calling political markers, because of a perceived threat to their pharmacological gravy-train. They are on high alert to questions of their position as gatekeepers to health. They are happy to see people die rather than call off their legal dogs. There are many in the media who love to see this happen, so they can sell more paper to credulous fools, and pass on their self-styled and well-paid expert's "knowledge".

There is good evidence for copaxone's synergy with mitoxantrone, which I was on when the copaxone was withdrawn. The doctor adminstering the mitoxantrone ok'ed the copaxone. This was a simple case of egomania gone stupid. Don't quote me any papers. I've heard all the party lines.

Doctors/neuros are free to do what they want to do. Nobody is forcing them to prescribe. They will anyway, regardless of what anyone tells them not to. I just think some of them are myopic and reactionary when it suits their mood, regardless of patient benefit.

[centenarian100]

But no doctor should refuse treatment to an informed person.

So why bother having doctors? Why not just just put narcotics and antibiotics on the shelves and assume everything will work out?

I am no more cynical than the people portrayed in the film "Dallas Buyers Club".

The original dose of AZT was too toxic. Understanding of this came from randomized clinical trials, leading to safer lower dosing. Also, the FDA created an escalated orphan drug program in response to this. Clinical trials are good. Over-prescribing medication to appease desperate patients is bad. There are obviously cases in which seeking evidence delays widespread use of new treatments, but this is a necessary evil. Otherwise, we'll have widespread prescription of ineffective drugs (i.e. fingolimod in SPMS)

Don't threaten me with PML, leukemia, etc. I will take my own risks.

Do you feel this way about all drugs in all situations? The patient should just decide and the doctor should just do whatever the patient says (i.e. prescribe ineffective drugs, perform unnecessary procedures)?

There is good evidence for copaxone's synergy with mitoxantrone

source?

Doctors/neuros are free to do what they want to do. Nobody is forcing them to prescribe. They will anyway, regardless of what anyone tells them not to. I just think some of them are myopic and reactionary when it suits their mood, regardless of patient benefit.

I agree that doctors often have imperfect judgment and commonly make errors. Why don't you go to medical school and become a perfect doctor who always prescribes the correct treatment and cures every patient.

[1eye]

Otherwise, we'll have widespread prescription of ineffective drugs (i.e. fingolimod in SPMS)

If lots of doctors prescribed fingolimod off-label in so-called "SPMS", we would find that it works as well in very many other cases (many of them misdiagnosed anyway) as it does in so-called "RRMS". One study! It is to laugh... "Do no harm." I think people are starting to see through that one.

"Statistics shall make you free." Or, at least, very inexpensive...

[centenarian100]

If lots of doctors prescribed fingolimod off-label in so-called "SPMS", we would find that it works as well in very many other cases (many of them misdiagnosed anyway) as it does in so-called "RRMS". One study! It is to laugh... "Do no harm." I think people are starting to see through that one.

"Statistics shall make you free." Or, at least, very inexpensive...

So don't you think it's a good thing that the study was done so that doctors can stop prescribing an ineffective and potentially harmful drug?

[1eye]

If lots of doctors prescribed fingolimod off-label in so-called "SPMS", we would find that it works as well in very many other cases (many of them misdiagnosed anyway) as it does in so-called "RRMS". One study! It is to laugh... "Do no harm." I think people are starting to see through that one.

"Statistics shall make you free." Or, at least, very inexpensive...

So don't you think it's a good thing that the study was done so that doctors can stop prescribing an ineffective and potentially harmful drug?

Time will tell. Good thing everybody doesn't think one study is the last word. i think good doctors do not feel obliged to do everything by someone else's book. I reckon some doctors think their word should be the last. It shouldn't. You needn't continue to beat this poor animal; it is already dead.

Doctors will often let an informed person make their own decisions, and sometimes they even agree with them, regardless of what studies have or have not been done, or what others conclude about them. I think they play an important role besides that of drug gatekeepers. In the case of fentanyl, doctors don't seem to have much control anyway,

[centenarian100]

Time will tell. Good thing everybody doesn't think one study is the last word. i think good doctors do not feel obliged to do everything by someone else's book. I reckon some doctors think their word should be the last. It shouldn't. You needn't continue to beat this poor animal; it is already dead.

Doctors will often let an informed person make their own decisions, and sometimes they even agree with them, regardless of what studies have or have not been done, or what others conclude about them. I think they play an important role besides that of drug gatekeepers. In the case of fentanyl, doctors don't seem to have much control anyway,

Obviously, doctors can prescribe whatever they want regardless of FDA/EMA approval and the results of clinical studies. They may have other reasons to believe the treatment may be effective. They may think the study does not apply to your individual situation. They may question the methodology of the study. The point I'm trying to make is that you can't have it both ways. Either you think doctors should just prescribe you whatever you request, or you think doctors should refuse to prescribe treatments they believe are ineffective. In my opinion, doctors should refuse to prescribe treatments they believe are ineffective, even if the patient begs for it or demands it. In fact, I would go so far as to say it is unethical for a doctor to knowingly prescribe a medication which is ineffective and potentially harmful. Lets say you took fingolimod and got disseminated shingles or PML. Lets say you dropped dead that evening due to severe bradycardia. These are real side effects. They are not made up. People actually die or suffer serious illnesses due to these drugs. This is not a joke.

[1eye]

Obviously, doctors can prescribe whatever they want regardless of FDA/EMA approval and the results of clinical studies. They may have other reasons to believe the treatment may be effective. They may think the study does not apply to your individual situation. They may question the methodology of the study. The point I'm trying to make is that you can't have it both ways. Either you think doctors should just prescribe you whatever you request, or you think doctors should refuse to prescribe treatments they believe are ineffective. In my opinion, doctors should refuse to prescribe treatments they believe are ineffective, even if the patient begs for it or demands it. In fact, I would go so far as to say it is unethical for a doctor to knowingly prescribe a medication which is ineffective and potentially harmful. Lets say you took fingolimod and got disseminated shingles or PML. Lets say you dropped dead that evening due to severe bradycardia. These are real side effects. They are not made up. People actually die or suffer serious illnesses due to these drugs. This is not a joke.

Good thing. I have serious doubts about some people's sense of humour. My brother got shingles from doctors giving him immune suppressing drugs. I'm not laughing. I met a woman who had PML from natalizumab. I didn't laugh at her. But I'm not afraid of fingolimod, firmly believing that doctors who refused to give it to me were the unethical, malevolent ones. "Informed" people who are afraid of it are just being deliberately brain-dead. Time will tell who is right. My friend who has been taking it for years is not worried. I got serious heart problems from doctors who would also not prescribe fingolimod, but were willing to make me a guinea pig with mitoxantrone, known to be cardiotoxic. If you don't know about its interaction with copaxone, try reading -- I can't do all your research for you. I have been right about wrong medications given me by doctors who thought they were god, too often to blindly trust them. My GP recently gave me free rein to take an antibiotic he prescribed, however I please. Or not to take it. He knows I have been taking antibiotics since long before he was born, more importantly, he trusts my judgement.