low dose naltrexone?

willingtocope · 10-01-2011, 06:25 PM

I know this has been discussed before as a possible drug for MS, but it seems to have been awhile.

I know there has been a small clinical trial in California...with positive results.

Anyone have any recent knowledge? I'm going to ask my PCP for a script...but I'd like some evidence that I'm not just grasping aty another straw.

MSWIFE1 · 10-01-2011, 11:22 PM

David did take LDN for about a year, getting a script was the hard part though. He did get some movement back after starting it, but it has continued to get better even after that. Can't say for sure the LDN did it or not. Same as the Ampyra, got more return then ever after starting it but that has tapered off too. No harm in trying it at all. It has been about 4 years since David took LDN.

Bonnette · 10-01-2011, 11:58 PM

Quote:

Originally Posted by MSWIFE1

David did take LDN for about a year, getting a script was the hard part though. He did get some movement back after starting it, but it has continued to get better even after that. Can't say for sure the LDN did it or not...No harm in trying it at all.

That's my take on it, too. I'm so glad to hear that LDN helped David even after he'd quit taking it. It's hard to understand why there's so much resistance to prescribing it, the side effects are not bad compared to other meds - especially at the MS dosage. Hope you can get a script, WTC.

Knight's Wife · 10-02-2011, 12:00 AM

Quote:

Originally Posted by Bonnette

That's my take on it, too. I'm so glad to hear that LDN helped David even after he'd quit taking it. It's hard to understand why there's so much resistance to prescribing it, the side effects are not bad compared to other meds - especially at the MS dosage. Hope you can get a script, WTC.

My husband (SPMS) has been taking it for years. He feels that it helped him keep bladder control for as long as he had it.
It is a pretty harmless medication, his neuro had no issue with prescribing it.

willingtocope · 10-02-2011, 12:35 PM

I'll give it a try. Nothing positive from Taurine as yet, but that's only been a couple of weeks.

willingtocope · 10-05-2011, 07:31 PM

So I picked up my naltrexone script today...50mg. Somebody made a mistake I think.

More hassle.

Bonnette · 10-05-2011, 07:42 PM

You're not kidding! That's the dose to treat opiate addiction. The MS dose begins at 1.5mg, and generally stabilizes at 3mg. Here's a link to show the doctor.

MSWIFE1 · 10-05-2011, 11:02 PM

Wow...can you catch a break? Good to hear the Dr. wrote a script though.

willingtocope · 10-07-2011, 01:32 PM

Yesterday, I started by calling the pharmacy. Pharmicist said 50mg was what was RXd. I called the doctor, talked to his nurse, explained that the dosage was wrong, she said she'd talk to the doc and called me back. She did...at 6pm...in the middle of dinner.

Said the doctor wanted me to come in and talk about...I said, I've got meetings all next week, and would call when I new when I could come in.

After I got off the phone, my auxiliary memory (my wife) reminded me it was the doctor who brought up the subject...his niece with MS takes
LDN...so what's there to talk about?

So...I call the pharm again today...that've got a compounding pharm they deal with, so they can get 4.5mg pills. I call the doctor, talk to his nurse, she talks to the doctor, he says he still wants to talk so we can put together a "plan". I say "we did that...he asked me to check the web...I did...found two studies (one in California, one in Italy)...both reported postive results with no side effects...and, 4.5mg is THE dose...nothing greater seems to help."

She's going to talk to the doctor again...

Argh...

MSWIFE1 · 10-07-2011, 07:17 PM

He has a car payment to make. Needs your money from the visit. Be nice and go see him. LOL

Just kidding

Hope you get this figured out soon and get some positive results. Oddly enough it was our local compounding pharmacy that told us about LDN too. She gave us a flyer on it, but I can't seem to locate it.

10-01-2011, 06:25 PM	#1
willingtocope Senior Member Join Date: Jun 2010 Location: Pleasant Hill Iowa Posts: 680	low dose naltrexone? I know this has been discussed before as a possible drug for MS, but it seems to have been awhile. I know there has been a small clinical trial in California...with positive results. Anyone have any recent knowledge? I'm going to ask my PCP for a script...but I'd like some evidence that I'm not just grasping aty another straw.

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10-01-2011, 11:22 PM	#2
MSWIFE1 Senior Member Join Date: Sep 2007 Location: Fithian, IL Posts: 1,852	David did take LDN for about a year, getting a script was the hard part though. He did get some movement back after starting it, but it has continued to get better even after that. Can't say for sure the LDN did it or not. Same as the Ampyra, got more return then ever after starting it but that has tapered off too. No harm in trying it at all. It has been about 4 years since David took LDN.

10-02-2011, 12:35 PM	#5
willingtocope Senior Member Join Date: Jun 2010 Location: Pleasant Hill Iowa Posts: 680	I'll give it a try. Nothing positive from Taurine as yet, but that's only been a couple of weeks.

10-05-2011, 07:31 PM	#6
willingtocope Senior Member Join Date: Jun 2010 Location: Pleasant Hill Iowa Posts: 680	So I picked up my naltrexone script today...50mg. Somebody made a mistake I think. More hassle.

10-05-2011, 07:42 PM	#7
Bonnette Senior Member Join Date: Dec 2008 Location: Colorado Posts: 2,600	You're not kidding! That's the dose to treat opiate addiction. The MS dose begins at 1.5mg, and generally stabilizes at 3mg. Here's a link to show the doctor.

10-05-2011, 11:02 PM	#8
MSWIFE1 Senior Member Join Date: Sep 2007 Location: Fithian, IL Posts: 1,852	Wow...can you catch a break? Good to hear the Dr. wrote a script though.

10-07-2011, 01:32 PM	#9
willingtocope Senior Member Join Date: Jun 2010 Location: Pleasant Hill Iowa Posts: 680	Yesterday, I started by calling the pharmacy. Pharmicist said 50mg was what was RXd. I called the doctor, talked to his nurse, explained that the dosage was wrong, she said she'd talk to the doc and called me back. She did...at 6pm...in the middle of dinner. Said the doctor wanted me to come in and talk about...I said, I've got meetings all next week, and would call when I new when I could come in. After I got off the phone, my auxiliary memory (my wife) reminded me it was the doctor who brought up the subject...his niece with MS takes LDN...so what's there to talk about? So...I call the pharm again today...that've got a compounding pharm they deal with, so they can get 4.5mg pills. I call the doctor, talk to his nurse, she talks to the doctor, he says he still wants to talk so we can put together a "plan". I say "we did that...he asked me to check the web...I did...found two studies (one in California, one in Italy)...both reported postive results with no side effects...and, 4.5mg is THE dose...nothing greater seems to help." She's going to talk to the doctor again... Argh...

10-07-2011, 07:17 PM	#10
MSWIFE1 Senior Member Join Date: Sep 2007 Location: Fithian, IL Posts: 1,852	He has a car payment to make. Needs your money from the visit. Be nice and go see him. LOL Just kidding Hope you get this figured out soon and get some positive results. Oddly enough it was our local compounding pharmacy that told us about LDN too. She gave us a flyer on it, but I can't seem to locate it.