Thanks, Sally & Cherie.

I requested the lowest dosage (1.5 mg.) b/c of something I read about LDN + hypothyroidism (which I take Synthroid for). I'm not worried about liver damage either -- and neither was the doc, but he's just being careful, I guess.


Hey, I just got off the phone with Skip of Skip's pharmacy! He was very friendly and we talked about 5 minutes.

I told him I had MS and wondered aloud why the insurance companies wouldn't be more than happy to pay this tiny amount for LDN, rather than the BIG bucks for Tysabri. He responded that its possible the insurance companies have investments with the drug companies, so it's purely a business interest. Not necessarily what's best for the patient.

He said, "That's why we don't do business with the insurance companies."

I've seen him called "Dr. Skip," so asked if he were a medical doctor. He said, "I'm a Pharmacy DPHD -- I actually earned my degree!"

Not exactly sure what he meant by that, but I thanked him and will wait for the pharmacy to call me once they get the prescription from my doc.

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

I just got back from the neuro.

It went like I thought. He told me that he'd heard of it, but that his opinion was that people who are "feeling better" while on LDN are getting a placebo effect, and that he didnt think that it does anything.

He also mentioned something about side effects, but really didnt get into what those side effects are.

So, no LDN for me...(at least from him...)

*grumble*

Oh well. I'll ask my regular doctor about it the next time I see him and see if he'd be willing to let me try it.

Sorry to hear, but I can't say I am really surprised.

One of the obvious disadvantages to not having trials is that it has not proven to be effective for MS . . . however, clearly it has not been "disproven" either. Not sure how he can be so convinced it's placebo, given that.

Either way, since it's harmless enough . . . why not let people be happily living pain-free, without a claw hand, while urinating properly, having semi-regular bowel movements, and with no more cog-fog . . . even if that is just a placebo effect?

Hope your doctor is more open-minded.

Cherie

argh lady_express.

You make me feel as if I need to defend my brother. He is not "too LAZY to do his own reading" and just not familiar with the drug. He is not omnipotent (all powerful) nor omniscient (all knowing).

This drug is not a common MS drug or even a common neurology drug. So he is cautious but he had no problem with it, he deferred to my MS doctor to hear what the guy had to say. He saw no harm and said to keep him informed.

He has a caseload of patients and he is one of the GOOD GUYS.

I will readily omit that your comment about neurologists being "LAZY" and asking a rhetorical question in regards to my brother's honest QUICK response makes me a little P.O.ed.

I was all set to leave it alone until you decided to tell me that my answer confirmed your suspicion about neurologists.

He was not familiar with it, THAT WAS ALL. He is not an MS neurologist.

For the record, I have been to several neurologists looking for a good fit. NOT ONE of them has every treated me with disrespect. If he/she did, I would have the good manners to say something so that he/she would have the opportunity to correct their attitude.

Twink since you have your prescription, just call my friend here in Phoenix. I will PM you with her Apothecary phone # and she may have you fax the script. You can ask her about mailing it to you or I can, just PM me. I will ask her, no problem.

Argh. Being that I grew up with a really smart brother (it was no fun following him in school, teachers always got SO EXCITED to have his sibling and ha! was that an education for them!), I really choose to ignore overt anger over neurologists. But don't push my buttons, I am a nice old lady until I get a little hot under the collar.