A note on off-label use

[Guest guest]

>>Naltrexone has not been approved by the medical profession so cannot be discussed by your doctor. Even if he believes it will work for you he cannot legally prescribe it as a treatment. It seems to be a reasonable precaution.<<

I don't know where you are writing from, but this is incorrect. Any treatment - approved or not - requires appropriate informed consent, part of which is the continuous (not one-time) sharing of information between doctor and patient, and an ongoing risk-benefit assessment. It's a team effort to maximize desired , and minimize unwanted effects which all medications have.

Having said that, medications - including some of the best available and most helpful ones in neuropsychiatry - are used off-label all the time.

Best regards,

Maurice Preter, M.D.

Psychiatry and Neurology. Forensic Neuropsychiatry

Assistant Professor of Clinical PsychiatryColumbia University College of Physicians & Surgeons

1160 Fifth Avenue, Suite 112 NY, NY 10029

+1-212-713-5336 www.psychiatryneurology.com

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of LuigiSent: Saturday, December 16, 2006 6:25 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Future Neuro Appointment

Hi Marcie;

I certainly agree with you. It is important to ask why and to understand the possible benfits of anything your doctor prescribes.

Naltrexone has not been approved by the medical profession so cannot be discussed by your doctor. Even if he believes it will work for you he cannot legally prescribe it as a treatment. It seems to be a reasonable precaution.

The fact that naltrexone helps so many people with MS leads me to believe that it will help my son. The drugs that are presently "approved" by the medical profession (CRABS) will, at best, reduce the frequency of relapses. They don't claim more than that - no cure - not even a halt to progression. For me that is not enough. So the doctors cannot help.

The choice seems quite simple: thousand of people write about how naltrexone has helped vs doctors who say naltrexone has not been "approved" for MS treatment - I can only offer something "approved" but don't expect much.

Luigi

[low dose naltrexone] Future Neuro Appointment

I am supposed to go to see my Neuro in January. I think I am going to keep the appointment, but I'm going to be ready for him. It wii most likely be my last!

He's wanting me to do the Novantrone (chemo) or Tysabri. First - I'm going to ask for something to sign that says there is NO risk and that I will see absolute improvement. Second - I'm going to remind him that I nearly died from a UTI this past summer and have not regained my strength yet, so why would I want to induce myself with ilness? Third - I'm going to remind him that he works for ME. I make informed decisions. My legs may not work, but my brain does.

My GP prescribes my LDN. So the Neuro won't even discuss it. It's my choice for treatment. I can't say that it is halting disease progression, but I know it is not hurting me.

Until something better comes along, I'll keep trying different alternative treatments. I'm doing high dose Vit C IVs and Hydrogen Peroxide IVs. I think I may finally be getting a little energy back.

Marcie

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[Guest guest]

Almost daily there are posts on this site about people approaching their doctors for naltrexone and being refused even after presenting the doctor with considerable information about naltrexone. The neurologist at my son's MS clinic will not even discuss it. My son feels that he will lose the support of the clinic if he does take naltrexone.

If what you say is true I don't understand how doctors can refuse to consider a reasonable treatment (such as naltrexone) that is requested by the patient. They do refuse, all the time. Many will recommend drugs only if clinically tested. If that is not a legal stand then the doctors are acting illegally. I have never heard of any doctor being disciplined for refusing to prescribe naltrexone.

luigi

[low dose naltrexone] Future Neuro Appointment

I am supposed to go to see my Neuro in January. I think I am going to keep the appointment, but I'm going to be ready for him. It wii most likely be my last!

He's wanting me to do the Novantrone (chemo) or Tysabri. First - I'm going to ask for something to sign that says there is NO risk and that I will see absolute improvement. Second - I'm going to remind him that I nearly died from a UTI this past summer and have not regained my strength yet, so why would I want to induce myself with ilness? Third - I'm going to remind him that he works for ME. I make informed decisions. My legs may not work, but my brain does.

My GP prescribes my LDN. So the Neuro won't even discuss it. It's my choice for treatment. I can't say that it is halting disease progression, but I know it is not hurting me.

Until something better comes along, I'll keep trying different alternative treatments. I'm doing high dose Vit C IVs and Hydrogen Peroxide IVs. I think I may finally be getting a little energy back.

Marcie

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[Guest guest]

Can you guys look for another neuro? I went to a neuro and then to the MS clinic and I liked the neuro better. He is more personable. Funny thing with him is that you have to ask for the prescription. He'll prescribe what he feels will work, but if its something else, like LDN, I has to ask him for it. Luigi <Luigi@...> wrote: Almost daily there are posts on this site about people approaching their doctors for naltrexone and being refused even after presenting the doctor with

considerable information about naltrexone. The neurologist at my son's MS clinic will not even discuss it. My son feels that he will lose the support of the clinic if he does take naltrexone. If what you say is true I don't understand how doctors can refuse to consider a reasonable treatment (such as naltrexone) that is requested by the patient. They do refuse, all the time. Many will recommend drugs only if clinically tested. If that is not a legal stand then the doctors are acting illegally. I have never heard of any doctor being disciplined for refusing to prescribe naltrexone. luigi [low dose naltrexone] Future Neuro Appointment I am supposed to go to see my Neuro in January. I think I am going to keep the appointment, but I'm going to be ready for him. It wii most likely be my last! He's wanting me to do the Novantrone (chemo) or Tysabri. First - I'm going to ask for something to sign that says there is NO risk and that I will see absolute improvement. Second - I'm going to remind him that I nearly died

from a UTI this past summer and have not regained my strength yet, so why would I want to induce myself with ilness? Third - I'm going to remind him that he works for ME. I make informed decisions. My legs may not work, but my brain does. My GP prescribes my LDN. So the Neuro won't even discuss it. It's my choice for treatment. I can't say that it is halting disease progression, but I know it is not hurting me. Until something better comes along, I'll keep trying different alternative treatments. I'm doing high dose Vit C IVs and Hydrogen Peroxide IVs. I think I may finally be getting a little energy back. Marcie No virus found in

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[Guest guest]

Thanks to Dr. Preter for your information. I was misinformed by some local doctors apparently. It seems that the vast majority of doctors simply don't believe in the benefits of LDN and will not prescribe it to treat MS patients. If you believe in LDN treatments you just need to find a doctor who shares your belief.

I respectfully retract my earlier statements about their legal requirements.

Does anyone know of a MS clinic in Canada that treats people with LDN?? My son is somewhat afraid to challenge the status quo? He has been told not to take LDN by his clinic neurologist because it will confuse the results of the copaxone treatment.

Luigi

[low dose naltrexone] Future Neuro Appointment

I am supposed to go to see my Neuro in January. I think I am going to keep the appointment, but I'm going to be ready for him. It wii most likely be my last!

He's wanting me to do the Novantrone (chemo) or Tysabri. First - I'm going to ask for something to sign that says there is NO risk and that I will see absolute improvement. Second - I'm going to remind him that I nearly died from a UTI this past summer and have not regained my strength yet, so why would I want to induce myself with ilness? Third - I'm going to remind him that he works for ME. I make informed decisions. My legs may not work, but my brain does.

My GP prescribes my LDN. So the Neuro won't even discuss it. It's my choice for treatment. I can't say that it is halting disease progression, but I know it is not hurting me.

Until something better comes along, I'll keep trying different alternative treatments. I'm doing high dose Vit C IVs and Hydrogen Peroxide IVs. I think I may finally be getting a little energy back.

Marcie

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__________________________________________________

[Guest guest]

>

> Almost daily there are posts on this site about people approaching

their doctors for naltrexone and being refused even after presenting

the doctor with considerable information about naltrexone. The

neurologist at my son's MS clinic will not even discuss it. My son

feels that he will lose the support of the clinic if he does take

naltrexone.

> If what you say is true I don't understand how doctors can refuse

to consider a reasonable treatment (such as naltrexone) that is

requested by the patient. They do refuse, all the time. Many will

recommend drugs only if clinically tested. If that is not a legal

stand then the doctors are acting illegally. I have never heard of

any doctor being disciplined for refusing to prescribe naltrexone.

>

> luigi

>

I've had not one, but TWO neurologists get up and walk out of the

exam room when I asked about naltrexone. Prior to the appointment,

I fax in a well written professional style letter stating what my

current problems are and what I would like to investigate. These

letters mentioned naltrexone. Allow me express my frustration - -

If it's a cultural thing, science thing.....tell me. I'm a big boy

now and can handle that point of view. The first neuro said " I had

a couple of patients on that....and it wasn't a good experience " .

What was the " non-good " experience? Who had the " non-good "

experience, the patient or the neuro?

By the time a person gets to be an M.D. specialist, there is a

trememdous amount of schooling and substantial time spent in

hospitals. I have a tremendous respect for the accomplishments.

All of this work develops the ability to memorize, catagorize, and

live inside a heirarchy. To get the naltrexone we have to step

outside that heirarchy and find professionals who have also stepped

outside of the heirarchy.

[Guest guest]

I am very happy that my comments on off-label use, the process of informed consent etc are useful to the group.

A few more, brief remarks:

A lot of the issues described in members' posts are related to the lack of information, and perhaps the lack of willingness to engage in out-of-the-box thinking of certain members of the medical profession.

LDN is completely unknown in mainstream medicine, especially in neurology and psychiatry, where it may have its greatest potential benefit.

Most people are willing to learn if they are given the opportunity.

On one hand, the problem is one of medical education that produces large numbers of specialists who don't have the necessary knowledge to provide appropriate and needed integrated care for complex illnesses.

On the other hand, it's a problem of lack of funding for integrated, quality medicine.

So, finding the right physician is a real challenge. And, given the economics of the system, it's at least in part a matter of being able to afford a physician who is not part of managed care, and who works within a traditional medical framework based on mutual trust.

As most neurologists are part of managed care, they work by "volume", rather than by taking the necessary time to deal with the various medical, psychological, and systems issues involved in chronic illness.

Managed care plans require individuals to, in essence, pre-pay for care they may not need or use, and often are denied access to care they do need or believe they need.

It is obvious that this is a very bad situation especially for people with chronic, complex illnesses.

For more on managed care, see e.g.,

http://www.idny.com/idny/static/methods.html#1

[i am affiliated with the Independent Doctors of NY].

Best wishes,

Maurice Preter, M.D.

Psychiatry and Neurology

Assistant Professor of Clinical PsychiatryColumbia University College of Physicians & Surgeons

1160 Fifth Avenue, Suite 112 NY, NY 10029

+1-212-713-5336 www.psychiatryneurology.com

Maurice Preter, M.D.

Psychiatry and Neurology

Assistant Professor of Clinical PsychiatryColumbia University College of Physicians & Surgeons

1160 Fifth Avenue, Suite 112 NY, NY 10029

+1-212-713-5336 www.psychiatryneurology.com

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[Guest guest]

Nice post Dr Preter. I worked in psych for years and prescribing off label was a common practice.  still is and it deserves a discussion. I know I went to the doctors last year and was pretty appalled at what I was  offered for menopause  as first line  treatment. One of the reasons I put the LDN DVD together was so doctors could see people in suits having a conversation and it wasn't some voodoo from the internet.CyndiOn Dec 17, 2006, at 11:36 AM, Luigi wrote:Thanks to Dr. Preter for your information. I was misinformed by some local doctors apparently. It seems that the vast majority of doctors simply don't believe in the benefits of LDN and will not prescribe it to treat MS patients. If you believe in LDN treatments you just need to find a doctor who shares your belief. I respectfully retract my earlier statements about their legal requirements. Does anyone know of a MS clinic in Canada that treats people with LDN?? My son is somewhat afraid to challenge the status quo? He has been told not to take LDN by his clinic neurologist because it will confuse the results of the copaxone treatment. Luigi. 

[Guest guest]

Luigi, How old is your son? How long has he been

diagnosed with MS. I was in the same position as you this summer.

My son is 20, almost 21 now, and had been diagnosed for about 6 months when he

had another serious exasperation with MS. He was pretty much blind in one

eye. A good friend of mine has MS and told us about LDN. I have

spent untold hours researching it, and ready tons of emails from people who have

extensive experience with LDN. Several people here helped us make the

decision. I know these people would be happy to share the information

with you. I can perhaps even forward their emails, with their

permission. My opinion is that I would do whatever it took, phone

consult, mixing it myself, but to get on the ldn ASAP. You can mix it

with copaxine if desired. We are not doing that. My son feels absolutely

terrific. He went to school full time, worked full time, and had a social

life. Before all he was doing was what was necessary, and sleeping.

He felt crummy. His MRI was improved from July to November. One

lesion was gone, the original problem in Oct 05 was from that area of the

brain, and the lesion in the middle of his brain was much lighter almost

gone. I am taking it also and feel like I have my life back. I feel

that LDN is the miracle I asked God for when my son was diagnosed. I am

sure many others here feel the same thing. Yes, there is much skepticism from

doctors. Talk to people, there are doctors out there willing to try

it. We found two of them. I know my doctor is becoming a

believer. I also believe my son’s neurologist who has three people

on it that we know of is slowly becoming a believer too. I hope within

the next year these doctors are readily using it for their other

patients. You can email me directly if you need anything. Summerwind1@.... Conni

[Guest guest]

Most likely another Wally Wanker neuro who mixed up naltrexone with

novantrone.......... :-(

alrightguy123 wrote:

>The first neuro said " I had a couple of patients on that....and it wasn't a

good experience " . What was the " non-good " experience? Who had the " non-good "

experience, the patient or the neuro?

>

>

[Guest guest]

That would certainly be a bad switch of names! The fellow is a hard

core clinical trial doc. He can talk every other word about " double

blind " , fancy latin words, etc. Since naltrexone isn't supported by

Satan Pharmaceuticals Ltd., in his eyes and best judgement for his

pateints, he won't prescribe it.

>

> >The first neuro said " I had a couple of patients on that....and it

wasn't a good experience " . What was the " non-good " experience? Who

had the " non-good " experience, the patient or the neuro?

> >

> >

>

[Guest guest]

that seems to be the drug MANY docs were talking about AND ANSWERING for when we've gotten scare tactics warnings 'from docs asked' by patients.

it surely is a bad switch of names. I think one doc even wrote the script for NOVANTRONE and it was the patient who caught the ERROR

[low dose naltrexone] Re: A note on off-label use

That would certainly be a bad switch of names! The fellow is a hard core clinical trial doc. He can talk every other word about "double blind", fancy latin words, etc. Since naltrexone isn't supported by Satan Pharmaceuticals Ltd., in his eyes and best judgement for his pateints, he won't prescribe it.> > >The first neuro said "I had a couple of patients on that....and it wasn't a good experience". What was the "non-good" experience? Who had the "non-good" experience, the patient or the neuro?> > > >>

[Guest guest]

It is a shame that a doctor has the right to refuse a patient the treatment requested especially when the alternatives are not particularly good. I wonder if your doctor's employer has resricted what he is allowed to offer.

As far as I know there are no harmful effects from naltrexone. It has been clinically tested at dosage of 50mg per day. I had success with a GP when approached with "It won't hurt me and just might help me".

Do you really need the support of this particular doctor/clinic? It sounds like he is not really interested in what you think or want. Don't give up on naltrexone. It can be taken with copaxone (mainstream approved).

Luigi

[low dose naltrexone] Re: A note on off-label use

That would certainly be a bad switch of names! The fellow is a hard core clinical trial doc. He can talk every other word about "double blind", fancy latin words, etc. Since naltrexone isn't supported by Satan Pharmaceuticals Ltd., in his eyes and best judgement for his pateints, he won't prescribe it.> > >The first neuro said "I had a couple of patients on that....and it wasn't a good experience". What was the "non-good" experience? Who had the "non-good" experience, the patient or the neuro?> > > >>

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[Guest guest]

> >

> > >The first neuro said " I had a couple of patients on that....and

it

> wasn't a good experience " . What was the " non-good " experience?

Who

> had the " non-good " experience, the patient or the neuro?

> > >

One last thing then I'll keep my fingers off the keyboard. I do

respect the neuro and he would be welcome in my home for dinner. I

do wish he would fill in a few more details and recognize that I've

spent several years in pharma / medical diagnostics and have had

work reviewed by the FDA. Give me enough information so I can

formulate my own opinion.