Lady_Express/Cherie-Quest about LDN

[jena1225]

Hi Cherie. I was just reading up on LDN again, and noticed that you can have only so many treatments, then no more, ever. So, what do they say happens to you sx's for all those years after?

Also, how far along are you with your treatments?

You know, I brought it up to my Nuero last week, and he just kind of turned and said oh, thats chemo, you don't want to mess with that, and that was it.

I am not sure I am even a candidate, or even want it. I mean, the side effects with the heart and all. But you do make it sound enticing :p

[Virginia]

Jena, I know that Cherie will be along shortly, however LDN and the chemo are two different things. Cherie does take LDN. This is not one of the recognized "disease modifying drugs" by the medical profession. However, there are people who seem to have gotten some relief with it. Cherie is one.

The chemo is Novantrone. It is usually given when people are progressing at a pretty rapid rate because it does have a lifetime limit and it can be somewhat heart risky.

When you get a chance go to the top of the page and you will find that XO++ has spelled some of these things out for us. Try to read his post. They are good and informative.

But as I said Cherie will be along, so forgive me if I just kind of jumped in, but it did sound as though the two were being confused.

Virginia

[euphoniaa]

Hi Jena,

Your neuro was obviously referring to Novantrone, which is chemotherapy that has the potential for heart damage and not LDN (Low Dose Naltrexone). LDN is just a few mg of Naltrexone, a med which has an established safety profile through both clinical trials and patient use as an opioid antagonist used to treat patients with an addiction to alcohol or drugs.

According to Mayo (http://www.mayoclinic.com/health/drug-information/DR601877), Naltrexone is prescribed at around 350 mg/week or 50-100 mg/day for addiction patients. The Low Dose that MS patients use is around 3-6 mg/day.

Although LDN hasn't been through clinical trials to establish its effect on MS, many of our docs have prescribed it for us believing that the small amount won't hurt us. I managed to get it for a little over a year until my doc changed hospital affiliations and told me she could go to jail for giving it to me.

The only thing LDN did for me was to improve most of my symptoms and put me in a better mood, but it sure didn't cure my MS. :) Right before she fired my a** as a patient, my PCP offered to prescribe a whole host of powerful, side effect producing, addictive meds to take its place, but ignored my pleas that she continue prescribing this single, mild med (LDN) instead.

Good luck in asking to try LDN. I've had so many docs freak out on me when I dared to mention it that I gave up asking. When I asked my previous neuro for Naltrexone, she actually noted in my subsequent report that I had asked her for Novantrone instead. What a doofus. :p She fired me as a patient, too.

[lady_express_44]

Hi Jena,

Looks like Virginia and Susan have given you great information already. Your neuro was thinking you meant Novantrone, not (Low Dose) Naltrexone.

Below is what I had written about LDN on another thread recently:
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LDN is not a mainstream drug for MS, and it has not undergone clinical trials for the purposes of treating MS.

LDN is compounded from a higher dose of "Naltrexone", which is FDA approved, but originally developed to treat people for drug and alcohol addiction. The dosage for that purpose is 50 mg (x 3) = 150 mg per day.

In the 1980's, a Neurologist in the US decided to try a dose of 3.mg - 4.5mg (approx. 3% of the FDA approved drug) for MS patients. Dr Bihari noted that the drug, at this slight dosage and taken at a certain time of day, worked very well to:

- improve our symptoms
- stop or significantly reduce relapses
- reduce disease progression

and has been prescribing it to PwMS since then.

Some neuros/doctors still will not prescribe LDN, and many of us have had to put up a good fight to get it. Other's either have experience with it for this purpose already, or they do not see any harm in rxing it.

There is no scientific proof that LDN works to lessen symptoms, reduce relapses, or slow the progression of MS. It is "generic" drug, and very cheap (about $30 a month), so there isn't much incentive to do a clinical trial to prove or disprove it's effectiveness. However, many people (including myself) claim that LDN has helped them tremendously, and that this is obvious from their MRI's and/or neurological testing.

As far as getting a prescription from your doc, you need to be prepared with detailed info on LDN. I can help direct you to the information you need, should you decide to try this course of treatment.

NOTE: many people combine LDN and Copaxone to get double protection. It is not normally recommended with the interferons though.

http://brain.hastypastry.net/forums/showthread.php?t=12541
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I have a couple of great links to information on LDN, to help you with your discussions with your doc/neuro. It took 6 months to convince my doc (my neuro said "no"), and at first he would only rx it for a month, then three, then six, and now I get an annual rx for it. My old neuro (and all the MS Specialists at the huge research center here) are rxing it to anyone who asks now.

Cherie