Re: LDN & MS

[Guest guest]

.

I have never taken any drugs other than LDN. Dr. Bihari has advised me that the dose of LDN is so small that there is no negative effect on the liver. The thought of being on the ABC ms drugs for life has also always freaked me out as well. Especially since they are not what they are cracked up to be.

Between the proper diet, supplements, exercise and LDN we the ms'er's are doing more than traditional medicine to overcome ms. We are succeeding.

Regards,

Tom

[Guest guest]

One day at a time

1. Nope, never took any of the CRABs, never considered them, turned them down after finding people online who were taking them and talking about all they go through. It is said that copaxone is ok with LDN, but the other 3 may be working on both sides of the fence and interfere with each other. Everyone has to make their own choices.. and their body will react how it will react based on input.

2. I figure when I'm ready to go for a Disability Retirement, all I have to do is stop taking this Unapproved Drug and I should be able to retire within 6 months since I'd probably go back to feeling how I was feeling just before starting. Taking LDN EVERY DAY, as you say, a life long drug therapy, is no different than having to brush my teeth every day, or anything else we do on a daily basis.

3. From what I've read, the liver involvement had to do with 300 MG per day, no concerns at 50 MG, and therefore logically hardly any at 3 or 4.5 MG. Liver panel blood tests should help you monitor your counts, just keep making sure they're within range.

----- Original Message -----

From: gina greenlaw

low dose naltrexone

Sent: Sunday, February 22, 2004 12:29

Subject: [low dose naltrexone] LDN & MS

For those who are taking LDN for MS, I have three questions:

1. Are you still taking an Interferon along with the LDN? If so, why? I'm newly dx'd and I'm still learning about everything MS. I was surprised to see that a few folks are taking both. . .I'd like to learn more about this approach of taking both simultaneously.

2. I've just started LDN (last night). My symptoms have been mild (the docts would say; I wouldn't! . Since the dx, I've been dealing with "foggy brain", major fatigue, a bout of severe muscle fatigue (since passed) and vertigo. These symptoms come and go. I was prompted to start the LDN, though, for I felt it would help in slowing the progression of the Beast. So, with that preamble, I have also had the realization that it may, in fact, be a life long drug therapy. . .this FREAKS me out! To be taking it for the rest of my life (or until they find a cure) -- criminy!

Question: Anyone else have similiar thoughts about LDN, their symptom profile and the prospect of an endless commitment to a drug? I may be in the minority in this regard but am hoping that I'm not alone.

3. I understand that Naltrexone, at a very low dose, doesn't pose the same degree of toxity (to the liver) as would be the case with a higher dose. However, is it necessary to be taking liver supporting supplements to aid the organ in remaining healthy? Anyone ever research this? Any info to share?

Thanks very much.

Cheers,

gina

[Guest guest]

Hi of course you should be concerned with your diagnoses of M.S. I think there is not a person out there that wasn't when they were first diagnosed.

Now about being on ldn. for life let me tell you there could be worse things to be on for life, like a dialysis machine or insulin etc. You are not alone here and taking a single pill once at night is no big deal. Most women have done this before cause of the fear of the stork ) and I really know my sister in law would still be alive today if she had had the opportunity to use ldn.So therefore, yes you are on it for life!

Don,t be afraid of damaging your liver, read what posted three days ago re. liver problems and ldn.

Did you read about the first patient of Dr. Bahari's? She has been on ldn now for a very long time and I would love to get her input. I bet we wouldn't be dissapointed. Just be glad you have found ldn. now when you did I think you are very fortunate to have done so and after a week I want to here from you again.

Keep researching and reading all you can but by all means keep taking the ldn.

Reg.

-------Original Message-------

From: low dose naltrexone

Date: 02/22/04 10:29:47

low dose naltrexone

Subject: [low dose naltrexone] LDN & MS

For those who are taking LDN for MS, I have three questions:

1. Are you still taking an Interferon along with the LDN? If so, why? I'm newly dx'd and I'm still learning

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hi ,

I haven't started ldn yet, but I can pass along info on liver toxity.

Found this among other things researching documentation to give to my

neuro when I ask for the ldn prescription. As far as a life-long

commitment to a certain drug therapy, if it's going to help alleviate

any of my brain fog; debilitating fatique; speech, memory, cognitive,

walking, swallowing, vision, bladder, or bowel problems; tingling;

spasticity; numbness; tremors; or pain at all I will gratefully take

it for as long as it helps. Hope the following is of assistance to

you.

My best,

Lesa

LANCE L. GOOBERMAN, M.D., F.A.S.A.M.

Certified Member American Society of Addiction Medicine

Home About Dr. Gooberman Pellets Detoxification

Pellets > FDA > Liver Toxicity

Black Box Warning Re:Liver Toxicity

January 21, 2000

CONFIDENTIAL – ATTORNEY - CLIENT PRIVILEGE

Alma Saravia

Flaster, Greenberg, Wallenstein, Roderick, Spirgel,

Zuckerman, Skinner & Kirchner, P.C.

Commerce Center

1810 Chapel Avenue West, Third Floor

Cherry Hill, New Jersey 08002-4609

Re: Naltrexone

Dear Ms. Saravia:

You have asked us to review the black box warning which appears in

the Revia (naltrexone hydrochloride) package insert (PI), the data

supporting that warning and the warning's current clinical relevance.

Based on our review, it appears that the black box warning for Revia

is based on evidence from a small trial in a population for which the

drug is not labeled and in which no clinically-relevant adverse

events were noted. The original studies in the within-label patients -

- opiate dependent addicts -- do not support the warning. Clinical

experience and literature published subsequent to Revia's approval

have apparently led the addiction treatment medical community to

largely consider these warnings to be unnecessary. Our analysis is

provided below. Revia is an oral tablet dosage forrn of naltrexone

which is FDA approved for both the treatment of alcohol dependence

and the effects of exogenously administered opioids. The PI for Revia

notes that the black box warning is primarily based on results of a

single, small (50 patient), placebo-controlled study in an off-label

patient population (obesity patients) using six times the recommended

dose. In that study a substantial portion of the Revia patients

developed serum transaminase elevations of three to nineteen times

baseline within eight weeks of beginning treatment. The clinical

relevance of this data is not apparent. The patients demonstrated no

clinical signs of liver malfunction, and their transaminase levels

returned to or approached baseline values within weeks of

discontinuing treatment. In addition to the PI, we reviewed the FDA

Medical Officer's Summary Basis of Approval (SBA) for Revia to search

for any additional evidence on the hepatotoxic potential of the drug

and FDA's basis for requiring the black box warning. The SBA is an

internal FDA document which sets out the reviewer's analysis of the

data. The SBA does include a safety review of the obesity trials, and

a conclusion based on that data that, at doses four to seven times

the recommended dose, Revia " has the potential to cause apparently

reversible hepatocellular injury in a substantial proportion of

patients to whom it is administered for several weeks " (emphasis

added). The dose range referred to by the medical officer would be

200-350 mg per day. The Medical Officer goes on to minimize the

relevance of that study to the treatment of opioid addiction and

concludes, " Clinical experience using [Revia] in detoxified, formerly

opioid dependent individuals at the dose recommended in the [Revia]

labeling fails to provide a basis for substantive concern about

[Revia's] safety. " Results of the only placebo-controlled study in

detoxified opioid dependent patients do not implicate Revia as a

hepatotoxin. In that study no new laboratory abnormalities developed

and there were no differences detected between the placebo and

naltrexone groups. In fact, in summarizing the safety evidence from

studies in this population the medical officer stated that " the

enumeration of treatment emergent signs, symptoms, and abnormal

laboratory findings that occurred in the clinical trials of [Revia]

in detoxified opioid-dependent populations did not display a

sequence or pattern that implicated [Revia] treatment as the cause of

the abnormalities detected. " The Medical Officer specifically

emphasized that " this statement applies to the occurrence of elevated

serum transminase levels. " While FDA did not clearly articulate why a

black box warning was included in the Revia PI, such a warnings

typically reserved for drugs with a greater quantity and quality of

clinical data in the NDA indicating that the drug may be hepatotoxic.

The clinical data submitted in the NDA did not show that naltrexone

was hepatatoxic in the patients who would actually be administered

the drug at the recommended dose.In 1988, Brahen confirmed the lack

of effect of naltrexone on hepatic enzymes of opioid dependent

patients. His research involved a within-label group of patients

receiving the recommended dose for a period longer than the obesity

group submitted in the NDA. benefit of admitting patients with the

sole problem of elevated hepatic enzymes generally exceeds the risk. "

(J Clin Pharmacol, 28(l)68-70 1988 Jan.)Moreover, according to Dr.

O'Brien, Professor and Chief of Psychiatry at the University

of Pennsylvania Veterans Medical Center, Revia is routinely

prescribed to detoxified opioid dependent patients without the

subsequent liver function monitoring recommended in the black box

warning. In fact, Dr. O'Brien noted that notwithstanding the fact

that patients in this population often have underlying liver disease

due to years of illicit drug use, Revia is routinely prescribed.

It appears from our review that the black box warning for Revia was

supported by very tenuous data and has not been found warranted by

subsequent research or clinical experience.Please let us know if we

can provide you with any further information.

Sincerely,

N. Gibbs

JNG/rag

http://www.lancegooberman.com/liver.htm

> For those who are taking LDN for MS...I have also had the

realization that it may, in fact, be a life long drug

therapy. . .this FREAKS me out! To be taking it for the rest of my

life (or until they find a cure) -- criminy!

> Question: Anyone else have similiar thoughts about LDN, their

symptom profile and the prospect of an endless commitment to a drug?

I may be in the minority in this regard but am hoping that I'm not

alone.

> 3. I understand that Naltrexone, at a very low dose, doesn't pose

the same degree of toxity (to the liver) as would be the case with a

higher dose. However, is it necessary to be taking liver supporting

supplements to aid the organ in remaining healthy? Anyone ever

research this? Any info to share?

[Guest guest]

‘Tom, what a powerful message. . . the proper diet, supplements, exercise and LDN!

Finally the

proven formula. For over 20 years I’ve been doing

the first 3 with my MS and hoping it was going to stop my progression. Now with the addition of LDN I feel

confident about my management program. In fact I now have a big smile on my face

when I continue to say NO to the ABCR drugs those nuerologists

continue to push. Thanks again for

confirming my thoughts.

-----Original Message-----

From: tmbayuk

[mailto:tmbayuk@...]

Sent: Sunday, February 22, 2004

1:12 PM

To:

low dose naltrexone

Subject: Re: [low dose naltrexone]

LDN & MS

.

I have never taken any drugs other

than LDN. Dr. Bihari has advised me that the dose of LDN is so small that

there is no negative effect on the liver. The thought of being on the ABC

ms drugs for life has also always freaked me out as well. Especially

since they are not what they are cracked up to be.

Between the proper diet,

supplements, exercise and LDN we the ms'er's are doing more than traditional

medicine to overcome ms. We are succeeding.

Regards,

Tom

[Guest guest]

,

Stick with your gut feelings they are the very best guide that you can have. Keep up the good work. We ARE beating this.

Regards,

Tom

[Guest guest]

I too started LDN 4 weeks ago and went form one week on 1.5 than to 3.0 for

now 3 weeks, I have to say that I had one day that was really good for me

the rest of the time it's been difficult. I too have the only problem with

my right leg, difficult walking toes are always cramped, ankle doesn't want

to bend. I am taking LDN with Copaxone which I have been on for a year. I

attended the LDN conference and was very encouraged with this conference. I

know they say to give it 6 months an I am going to do that (if I can

convince my Doctor, she only gave me a month scrip to see how it will work).

I also sleep with a bar of soap, and am taking supplements one of them is

DPL> I read these posting everyday and it uplifts me to read about all the

positive issues that everyone is having, I think the main reason that I am

at a stand still is because I haven't excepted the fact that I have MS. Take

care and blessings, JC

[low dose naltrexone] LDN & MS

>I started LDN 5 weeks ago I was two weeks on 4.5mg found it difficult

> to sleep so went down to 3mg. I've been on 3mg for 3 weeks now and my

> MS seems to have got worse when I say worse I am finding more

> difficult to use my left leg (which was a problem since before I was

> diagnosed. Is there any person with ms having the same problem and how

> long must a person be on LDN before he sees a change for the good. I

> know some people find the benefit almost immediately but I am sure

> there are people who find it took longer I would like to know how long

> it took for some people.

>

> Thanking you in anticipation

>

> Dave (NEW MEMBER)

>

>

>

>

>

>

>

>

[Guest guest]

Introductory Side-effects: There may be some initial transient, though

temporary, increase in MS symptoms during the adaptive period when the

LDN is first introduced. This usually lasts no more than one week but

if symptoms are severe, or more prolonged, then the initial dose of 3

mg may be reduced to 2 mg until the anticipated improvements begin to

develop.

Introductory symptoms, on starting this treatment, may include such as

disturbed sleep, occasionally with vivid, bizarre and disturbing

dreams, tiredness, fatigue, spasm and pain.

Symptoms related to increased endorphins: These may include such as

nausea or constipation. These symptoms diminish naturally as the body

adjusts to the increased endorphin level.

From Dr. Lawrence

Hope this helps.

Alll The Best,

....

helpful support groups for people with MS

LDN_Users

low dose naltrexone

mscured

TheChronicIllnessCafe

On Apr 14, 2006, at 6:18 PM, nn Covert wrote:

> I too started LDN 4 weeks ago and went form one week on 1.5 than to

> 3.0 for

> now 3 weeks, I have to say that I had one day that was really good for

> me

> the rest of the time it's been difficult. I too have the only problem

> with

> my right leg, difficult walking toes are always cramped, ankle doesn't

> want

> to bend. I am taking LDN with Copaxone which I have been on for a

> year. I

> attended the LDN conference and was very encouraged with this

> conference. I

> know they say to give it 6 months an I am going to do that (if I can

> convince my Doctor, she only gave me a month scrip to see how it will

> work).

> I also sleep with a bar of soap, and am taking supplements one of them

> is

> DPL> I read these posting everyday and it uplifts me to read about

> all the

> positive issues that everyone is having, I think the main reason that

> I am

> at a stand still is because I haven't excepted the fact that I have

> MS. Take

> care and blessings, JC

> [low dose naltrexone] LDN & MS

>

>

>> I started LDN 5 weeks ago I was two weeks on 4.5mg found it difficult

>> to sleep so went down to 3mg. I've been on 3mg for 3 weeks now and my

>> MS seems to have got worse when I say worse I am finding more

>> difficult to use my left leg (which was a problem since before I was

>> diagnosed. Is there any person with ms having the same problem and how

>> long must a person be on LDN before he sees a change for the good. I

>> know some people find the benefit almost immediately but I am sure

>> there are people who find it took longer I would like to know how long

>> it took for some people.

>>

>> Thanking you in anticipation

>>

>> Dave (NEW MEMBER)

>>

>>

>>

>>

>>

>>

>>

>>

[Guest guest]

I am by far an expert on LDN but it is my experience

to stay with what is working. I had tried to move to

4.5 becAuse I misunderstood the whole concept of LDN.

My personal advice is to stay where you are

comfortable.

2

--- dollsesq <DollsEsq@...> wrote:

> Thank you for posting , this information is

> useful to me as some

> people are suggesting I go up to 4.5 since I am okay

> on the 3 mg. I

> called Dr. Bihare's office and they said most

> patients are on 4.5 so

> it is very confusing.

>

> Joyce

>

__________________________________________________