I sent a quick e-mail to my brother last night and when he got into his office in the morning, he send a quick reply.

I just wanted to run it by him to see if he had heard any negatives.

As you read, he is not familiar with the drug at all.

All the websites referenced seem to center around one doctor or Skip's pharmacy. Even the .org (which is for me, more reliable) said that LDN had not been tested for MS.

I also asked my friend, a pharmacist, who mixes this compound for patients. She has no MS patients but does make it for others. She had no problem with the low toxic dosage.

I hope I helped with your confusion...

Thanks, Aarcyn.

What you've said is exactly the reason I made my prior comments to Erin:

Neurologists and MS Specialists do not normally have any experience with this drug . . . so I appreciate that this may be treading on unfamiliar territory for them. I have noticed that GP's are much more likely to rx LDN, probably because many have previously prescribed it for other purposes, at a MUCH higher dosage.

Naltrexone is just a minute dosage of a very well-established medication. That they haven't done many large trials on the toxicity of LOW DOSE Naltrexone is probably a moot point. That would be like saying that Ibuprophen has been safely trialed at 5X it's recommended dosage . . . BUT it has not been trialed at 1% of that dosage (so we don't know it's toxicity at that level ).

I agree there isn't any scientific proof of LDN's efficacy for MS. There are a lot of (especially symptom) meds we take that have never been trialled for MS specifically. Only anecdotal evidence exists that they may work for us, but that doesn't stop our doctors from prescribing them when we ask though. . . .

Cherie

That is basically my recommendation, written on the summary page of that documentation. If we seem TOO desperate or demanding, they are less likely to be cooperative.

Like I said, it took 6 months before my doctor agreed to rx it, and by that point, I was a pro on everything there was to know about LDN. I think it was more my LONG-term determination and tenacity that wore him down though.

Although I relied on various sources to pull together that "risk assessment", it was never intended to be published information, ie. "propoganda". My doctor was very specific on what he wanted me to research and document . . . and that was what I provided him. It was only after I got my rx that I thought the information might be a helpful "resource" for others, and have occasionally sent it the link to others by private message. So far, anyone who was determined enough has gotten the rx, just by reading and fully understanding the information in my document.

At this point, it seems that you are probably not "sold" on the idea yourself, and that is ok. Personally, I wouldn't "try" something that I didn't feel 100% confident on, and I would research until I was convinced it was the right choice for me. There is no way a doc could turn me down once I have that conviction.

LDN's intended use is NOT as a symptom management drug. It may be that we get symptom improvement, and most people seem to, but that is not the reason I went on it. I went on it to try to reduce relapses and slow disease progression, and if I got the symptom management too . . . that was going to be an added bonus. I was lucky that it did work in that regard for me.

Some people do opt to "sell" it to their doctors for strictly symptom improvement, and no doubt it would be harder to convince them that it might work on the disease process as well. Whatever works to get the rx . . .

Cherie

I'm actually sold on wanting to try it. I just am pretty sure that my neuro will not Rx it to me. He's an older doctor, and I just dont think he'll give me a Rx for it. I actually think I have a better chance to get my regular doctor to give it to me.

All the stuff I've read about it, stuff that you've said and things other people have said about it on several other forums that I lurk on have been nothing but good things about LDN. I just think my neuro wont want to give it to me because of the lack of any large scale trials for it.

I'm going to hand him a print out of some of the information you gave me before I leave his office today, and just hope that he'll call in a Rx for me. I have to go check and see if the compounding pharmacy here in town can make it..

Edited to add: Called the compounding pharmacy. They CAN make it! And, they've made it before!

So, at least I know I can get it locally if the neuro is willing to give me a Rx. The pharmacist told me that it's about $70 for 100 of the 4.5mg dosage. She didnt know what the lower dose price was, but I'm pretty sure that I can afford it. The pharmacy is a cash only/credit card business. They dont do insurance. But, at least I can get it there.

I meant to respond to this earlier and forgot.

The "ideal" dosage for LDN is 3.0mg - 4.5 mg. Some (especially men and petite women) can't get higher then 3.0 mg, but ideally everyone else will ultimately aim for a dosage of 4.5 mg.

I think 1.5 mg is a good starting dosage, especially if you have contributing medical concerns which might conflict. 1.5 mg is not likely to get you much symptom improvement (if you get this "bonus"), and according to Dr B, is not going to protect you from having relapses or progression either. The minimum is 3.0mg in order to realize these benefits from LDN.

If it takes 3 or 6 months to get up to 3.0mg, and you need tests to ensure that this isn't affecting your other condition . . . so be it. You will need to move up at some point though.

Cherie

I think it's, actually, a better idea to start at 3mg and go down if necessary. Most people are ok at 3mg to start and many stay there a long while, before going up to 4.5mg....I did!!

My doc approved LDN for me on Monday.

So yesterday I got a message from my PCP's office. The phone number for Skip's Pharmacy didn't work. So I gave it to them again.

I just got home and there was a message from Skip's in Florida telling me to call them b/c they needed my info. And so I did.

Two different ladies were helping me, and neither could find any Rx information. I was on hold for 10 min. and "Roseann" said to ask my Dr. office to call them. I said, "I already did that, and they did."

I suggested SHE call them, but she insisted that I do it again.

So she took my number and will continue to scour the office for the papers.

Losing faith fast.

Thanks for the heads-up. I was wondering about that earlier.

If I end up calling in another prescription, I'll see if I can get that changed. What pharmacy do you use? I think I will find another one if they have lost my info for good.

Someone put a hyphen between my middle and last names, so they couldn't find it on the computer.

Now then, this is what Phil, the pharmacist told me during our little chat.

He said that nearly everyone starts at 1.5 mg. for 1 month, then 3 mg. for the second month, then ramps up to 4.5 the third month. This is to hopefully avoid the possible side-effects of "sleep loss and transient slight leg spasms."


I asked him what he knew about LDN's effectiveness with Crohn's disease. He said there was a Dr. Jill Smith at the Univ. at Penn State who had completed a clinical trial on Crohn's patients. He said they had an 85% success rate, with at least one patient going into full remission after 1 month. I got the idea it wasn't a big trial, but still, those numbers are very encouraging. I will have to share this with my bff who just got dxd and has been so very sick.


BTW, a 1 month prescription is $9.95!!!

Phew, no wonder you are called "TwinkleToes" . . . I can't even read fast enough to keep up with your progress.

I started at 3.0mg, and I did have some minor/transitory side-effects. I know others who've started at 4.5 mg, with no issues at all . . . but I am sensitive to meds.

The reason I thought 1.5 mg was a good start for you though, was because you mentioned that other condition, and because you already had the rx for 1.5 mg. I really don't think LDN is going to affect your other condition, but understandably your doc will want to keep an eye on that as you transition higher.

I really just wanted you to know that you aren't likely to see much (if any) improvement in symptoms at that dosage, AND, to let you know that you will have to move up to get much benefit.

I was going to say that I think Skip's has the best reputation for compounding LDN, even if there was this initial glitch. A number of people have tried other compounders, but the pharmacy needs to be up on what fillers are the best, and you don't want them crushing Revia (50 mg pills of Naltrexone) when they compound into smaller dosage capsules. Some fillers make the drug too slow release, and Skip uses the PURE Naltrexone powder to compound . . . so I think he is the preferred source in the US.

He is also great about talking one-on-one to anyone who has concerns along the way . . . and that is priceless.

I use a local compounder (in Vancouver) because it is just too slow getting it across the border. Mine is compounded into a liquid though, so I don't have to worry about "fillers" in a capsule.

Cherie