LDN

[Sunshine]

I will ask Neuro about LDN. Might be incompatible with MMJ and also muscle relaxers.

Is it OTC, or is it prescription only? If so, do all docs prescribe it, or only a few?

[Howie]

It's prescription, and requires a compounding pharmacy to make it.

[Sunshine]

I wonder if it’s hardvto find a doc to prescribe?

[Howie]

In your SEARCH, type "Doctors that prescribe LDN".

[Jeanie Z]

:) Go to Only registered and activated users can see links., Click Here To Register... and click on the MS link. Then print it out and take it to your primary care doctor. It is such a low dose 3 or 4.5 mg compared to 200 taken twice a day or more for stemming addiction. I doubt it would interfere with MJ. I have been on 4.5 mg for 17 years.

I have had MS since I was 18 and I am now 76. I was having new symptoms about every 3 months before I started LDN and I was gradually getting worse. LDN has stopped me from having new symptoms and has slowed my progression to almost none. Now my only decline is muscle strength as I don't get any exercise much.

More info at Only registered and activated users can see links., Click Here To Register...

I would NEVER give up LDN and some people had old symptoms improve on it, but I did not. I am happy to be staying the same. I send my RX to Only registered and activated users can see links., Click Here To Register... and he ships overnight. I order 3 months at a time to save on shipping. Jeanie :)

[Sunshine]

Thank you Jeanie. I see Neuro in a few weeks.

[Cherie]

I have taken it and it interfered with my sleep. My neuro prescribed it. I took it for about 2 weeks and had increasingly worse night's sleep with each passing day. It took almost a month after I was off it to get more than 4 hours of sleep a night. I am often one that has an opposite reaction to new meds but just wanted you to be aware there may be worse (or better) sleep patterns with it.

[Sunshine]

Thanks Cherie. I think I recall you saying that back then. Rings a bell.

Am so impressed with MMJ for neuropathy and stiffening, that I feel more open now to consider LDN depending on neuros comments.

[nuthatch]

I, like Jeanie, have been on LDN for many years. MS put me in a wheelchair within 5 years, before I started LDN, while I was on Avonex. I was miserable with flu-like symptoms, plus I was still having many flairs. I finally decided to quit Avonex ( like you, I had injected several doses of recalled meds. That certainly prompted me to make the decision!) and shortly after, started LDN.
I did the same thing Jeanie did, and printed up all the info about LDN to take to my doctor. I knew my neuro would be reluctant to prescribe it, it not being one of the mainstream approved MS meds, so I approached my PCP, who is much more "open minded". She looked into it and decided that it would do no harm at such a low dose. I started at 3mg.
My neuro was aware that I was going this route and I became his "observational case". Flairs stopped and I seemed to have more energy. While it is not a cure, it did stop the flairs, which was good enough for me. I have not had a single flair since starting LDN. My neuro has since become a believer in LDN and now writes the prescription for me. He has several other patients on it now.

Two years ago I asked my neuro to up the dose to 4.5mg to see if "more was better". I see no difference.
I honestly can't remember if I had any sleep problems when I first started LDN, but if I did, that was short lived. I know that Cherie reports that she did, but as I recall she was very dependent on sleep meds for years and years, so other factors may have been at work. Two weeks is a short effort and expectations may have been unrealistic. I had given Avonex 2+ years just for side effects to go away. They never did. It got psychologically harder and harder to give myself the injection, even though I am not a needle phobe.

Whatever you decide to do, I wish you the best.

P.S. I get my LDN through the mail, 3 months at a time, from Skips Pharmacy in Deerfield Beach, FL. They used to be in Boca Raton, but just moved. A 90 day supply is $87.80 including the shipping.

[Sunshine]

Thanks for your post Nuthatch.

Also, I did not know you too injected recalled Avonex!

[Jeanie Z]

:) I was on Betaseron 5 years and Avonex 2 years and continued to go downhill and have new symptoms on both of them.

When I found out about LDN and started that is when I stopped progressing. Jeanie :)