I agree, I did exactly that, along with the pharmacy information required and my GP said "Why not? You've tried a lot worse than this!"

I like a good, logical attitude.

I'm going to ask my neuro again, when I see her in August. If she won't prescribe, maybe she'll agree to let my PCP. I plan to ask my PCP with or without neuro's Okay.

Should I stop other meds before starting LDN? Are they compatible?

I read somewhere, if you're on an interferon you should stop it first, but what about a chemo med (Imuran)?

How about those for sx relief, such as Baclofen?

Any guidance or others experiences are most welcome and appreciated/

's

I did! I printed that off and highlighted a few areas. I sat there while he read every word!!! He said he didn't see any reason why not to try this!!!

Doing the happy dance!!!

The prescription is for 3 months. He suggested I come in for a blood test to make sure it wasn't causing any problems with my liver.

Woohoo!!!!

Ummm, is there a secret handshake or anything special I need to know about? I hope there's not any hazing involved to join the LDN club!!!

GOOD JOB, Twinkletoes!!

What dosage did you get to start; 1.5mg, 3.0mg or 4.5mg?

A lot of people start with 1.5 mg, and make their way up in 1.5mg increments. Last I heard, Skip would make them up in 1.5mg pills, and then you can adjust (double, triple) as you see fit. You may get up to 4.5mg very quickly or decide you want to stay at 3.0mg for a long while, depending on what works for you. When you stabilize though, he could make the pill at that dosage for a long while, or forever.

Cherie

What parts did you highlight? I go to my neuro wednesday and am going to attempt to get a Rx for some LDN. I'm afraid that he wont even consider the LDN because it's not been thru as many trials as the CRABs or any of the symptom management meds. I'm not sure he'll want to Rx any to me because it seems like most of what I've found on the internet about it is anecdotal information.

I really really want to try the LDN tho, not because I think it'll stop any progression or anything (I dont think it works that way), I just want to see if it'll work for some of the symptoms like numbness.

I just want to figure out what information would be best to print out to present to him. Last time I tried to ask about the LDN, he thought I was asking about novantrone. He wears hearing aids, and I was dumb and asked him about it when his back was to me. He didnt hear me correctly.

Is it advisable to wait to take LDN after stopping interferons and if so, for how long? I tried to search the thread but unless I missed it, didn't see this addressed. I'm asking for someone who just stopped taking Rebif.

Well, I'm going to do it. I'm going to get a prescription for LDN and start it just as soon as possible. I have to fill out some forms first, then have a telephone consult, then get my script filled.

I've been off my Beta for a while now and I'm pretty sure it's all out of my system. The more I think about the fact that there's only a 30% chance that the DMDs are helping the more I want to stop them.

I'm hoping the LDN will help with the pain I'm experiencing. I will continue to take my Zoloft, my thyroid and bp meds and also my Baclofen. Hopefully I'll be able to stop the Baclofen.

I can't wait to take my first dose!! Sally, is there any certain side effects we should be looking for? I've heard that sleep disturbances are one of the most common ones. I never sleep more than 4 hours at a time anyway so if I get that one I won't know about it!

Good luck!!

What dosage do you plan to start on? If it is 1.5 mg, you are very unlikely to have any side-effects (or notable benefit).

I started on 3.0 mg, and am very sensitive. The first few nights, I had a "rush" for about a 1/2 hour, and I hardly slept (BUT was no worse for wear because of it). I also had a slight headache, and some nausea (until I read the instructions and realized I should be downing a glass of water after taking it). Both of those went away by some time during the second week.

It was when I tried to up to 4.5mg, in late Sept, that I noticed the worst side-effect for me. That is when the weather turns colder here too, and my spasticity acts up when that happens. The first time I tried to go up, my spasticity kicked into high gear . . . so I waited about a month, until I adjusted to the weather change, and then increased the dosage by only .5 mg each month to get up to 4.5 mg. I was on "liquid" LDN though . . . so that made it easy to increase in small increments.

Spasticity is something that some people get, which can be a short-term or a ongoing side-effect of a higher dosage. Some people have an initial "awakening" of some symptoms (buzzing, numbness, etc.) for the first few weeks (it's LIKE the nerves are trying to repair) and this freaks them out. This is considered "normal" and nothing at all to be alarmed about.

Others mention vivid dreams, and this is one side-effect that might stay forever for a few people.

I know lots of people who've started on 4.5 mg though, and had absolutely no side-effects at all. I'm just listing all that I can think of at the moment so that you know not to be concerned if one of them does occur.

Cherie

Since you are starting so low, I don't think any side effects will be a bother....On 3mg I didn't have any SEs but good ones....When I tried 4.5mg, I had stiff legs, so went back to 3mg, and no problems.

Try to ramp up to 3mg asap, so you get the full benefit..

Whee!!! Good Luck..

There is no requirement to wait to go on LDN, after going off Rebif. Even though Dr B "recommended" not to combine LDN with the interferons . . . there are several people who've been doing just that.

The recent trials for LDN included participants who were on any one of the CRABs at the same time as LDN. Since I don't know the results yet, I'm not sure if they saw any differences in efficacy based on the various combinations.

There is no known issue with going off a CRAB, and straight onto LDN . . . at least that I've ever heard of anyway. (Copaxone has always been 'considered' compatible though . . .)

Cherie