Announcement

Collapse
No announcement yet.

LDN: who offered it to you.. how's it helping?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • pennstater
    replied
    Originally posted by Mamabug View Post
    Following this thread, even though it's very old.. After a lengthy discussion with my MS specialist about LDN yesterday, she reluctantly agreed to rx it because ((sigh)) she believes it might have a helpful placebo effect for me. I haven't filled it yet because I don't have a compounding pharmacy in the community. We'll have to go out of town.
    I wish you all the best on your new journey. Please keep us informed on how you feel once you start taking it.

    Leave a comment:


  • Mamabug
    replied
    Following this thread, even though it's very old.. After a lengthy discussion with my MS specialist about LDN yesterday, she reluctantly agreed to rx it because ((sigh)) she believes it might have a helpful placebo effect for me. I haven't filled it yet because I don't have a compounding pharmacy in the community. We'll have to go out of town.

    Leave a comment:


  • Mamabug
    replied
    Following this, even though it's a very old thread. After a lengthy discussion with my MS specialist yesterday, and after she declined to rx it 5 years ago when I asked, she reluctantly agreed to rx it because ((sigh)) she believes it might have a helpful placebo effect for me. I hope to fill it soon. There is no compounding pharmacy in my community so we'll need to go out of town

    Leave a comment:


  • Sequoia
    replied
    Originally posted by Loved View Post
    Thanks, Sequoia. I did stay at 1.5 for I think 3 weeks but thought I needed to get up to 4.5 for effectiveness. So I'm glad to hear that for women perhaps the 1.5 dose will make a difference. I will begin again.
    I know several women who are on 1.5 mg and getting good results.

    For that matter, some men have to back down from the 4.5 mg dose because of persistent spasticity, and still get good results.

    Leave a comment:


  • sich59
    replied
    I've been taking it at the suggestion of my neuro for about 2 months now, and I do think it helps a little bit with my symptoms, which are foot drop and severe weakness on my right leg and hip (I have PPMS). I noticed a change shortly after I started taking the drug. Nothing monumental, but any improvement is a good thing.

    I dropped the copaxone injections and replaced it with the LDN (I also take 4-AP), and it definitely has done more for me than the injections ever did.

    Leave a comment:


  • jrob281
    replied
    Originally posted by davmets1 View Post
    The only thing as far as side effect was vivid dreaming for the first couple months.

    I'd suggest giving it a try. It's cheap enough, I spend $85 for a 3 month supply.

    Don
    Vivid dreams, for me at least, are an awesome side effect to have! And $85 for 3 months isn't too bad. I'll have to talk to my GP see what he has to say.

    Leave a comment:


  • Loved
    replied
    Originally posted by Sequoia View Post
    Some people (women, usually) find they need to just stay at 1.5 mg and not go any higher. I'd suggest you restart at 1.5 mg, stay there for a good month, then try going up .5 mg at a time, very slowly.

    I believe Dr. Bihari (who did the pioneering work with LDN) said 1.5 mg was the lowest effective dose, so if you can't get above that you're still getting beneficial effects.
    Thanks, Sequoia. I did stay at 1.5 for I think 3 weeks but thought I needed to get up to 4.5 for effectiveness. So I'm glad to hear that for women perhaps the 1.5 dose will make a difference. I will begin again.

    I certainly had none of the bad dreams that others mentioned. But I do think it contributed to sleeplessness which is a problem for me anyway. But I get lots of reading done while awake in the night so I am accomplishing something.

    Leave a comment:


  • davmets1
    replied
    I have a very open minded neuro. I did my own research after reading a lot about it on this site. I brought it up to him and he had no problem giving me a script for it as he already had other patients on it. I don't understand why any neuro wouldn't let their patients at least try a med thats worked well for other people.

    I've been taking 3 mg for 6 months and found that I sleep much better than I used to. It's hard to say if it's helped with MS symptoms at this point as I started taking copaxone at the same time. Obviously if you sleep better it helps with energy levels during the day. The only thing as far as side effect was vivid dreaming for the first couple months.

    I'd suggest giving it a try. It's cheap enough, I spend $85 for a 3 month supply.

    Don

    Leave a comment:


  • Sequoia
    replied
    Originally posted by Loved View Post
    I started taking LDN due to the good words I heard about it here. My physician had no problem with me trying it.

    I ordered it from Skip's Pharmacy as others have as well.

    I felt wonderful on it. But when I increased the dosage from 1.5mg to 3mg, I noticed spasticity. Well, to be truthful, I hadn't even known what spasticity was before that so I have to ask. Anyway, then I increased to 4.5mg and the spasticity was really bad.

    I ended up stopping taking it. . . after ordering it in the 4.5mg dose. We were going on a trip out the country and I didn't want to be messing with meds.

    So now I may begin again because it did make me feel good (emotionally). But I will start at the 1.5mg level again and take it slow.
    Some people (women, usually) find they need to just stay at 1.5 mg and not go any higher. I'd suggest you restart at 1.5 mg, stay there for a good month, then try going up .5 mg at a time, very slowly.

    I believe Dr. Bihari (who did the pioneering work with LDN) said 1.5 mg was the lowest effective dose, so if you can't get above that you're still getting beneficial effects.

    Leave a comment:


  • Loved
    replied
    I started taking LDN due to the good words I heard about it here. My physician had no problem with me trying it.

    I ordered it from Skip's Pharmacy as others have as well.

    I felt wonderful on it. But when I increased the dosage from 1.5mg to 3mg, I noticed spasticity. Well, to be truthful, I hadn't even known what spasticity was before that so I have to ask. Anyway, then I increased to 4.5mg and the spasticity was really bad.

    I ended up stopping taking it. . . after ordering it in the 4.5mg dose. We were going on a trip out the country and I didn't want to be messing with meds.

    So now I may begin again because it did make me feel good (emotionally). But I will start at the 1.5mg level again and take it slow.

    Leave a comment:


  • tellnhelen
    replied
    Very Few Neuros will approve LDN

    My GP wouldn't prescribe it. My neuro knew of it but would not prescribe it. He's not sure it's effective. He worries that LDN might interfer with DMD. I came to LDN on my own after being very disappointed with Avonex. Yes, the evidence is antidotal but there is just so much of it. I HAD to give it a try. Lately though I've been getting a rash on my arms...like hives. I hope I'm not allergic to LDN. Don't know how to find out except to stop taking it for a while and see if the rash goes away. I will call Dr Sullivan and ask.

    Leave a comment:


  • KoKo
    replied
    Hello Jan

    I've been trying to convince my neuro to let me try LDN for a couple of years now. He is not a very flexible doctor. I took alot of info to him about the benefits of LDN, and he said it's just anecdotal.

    When I asked him once again at my most recent appointment, he made a deal. He said if I contact the Mellen Center for MS in Cleveland, and they say it has been tried on MS patients and has shown to be beneficial, then he will prescribe it. (Why can't he or his office do that?)

    I've gone on the Mellen Center website, and haven't found anything about LDN there. I am disappointed because I really want to try it. I'm pretty sure I've read that it is relatively safe and inexpensive.

    I'll try again next time.

    Good luck to you

    Take care,
    KoKo

    Leave a comment:


  • kudos
    replied
    knuckle, thanks for posting that link. The information got me thinking, since LDN works by increasing endorphins, should MS patients avoid opiods for pain if at all possible--would daily use of (syntehetic) opiods decrease our already low levels of endorphins by the reverse of this same mechanism? Food for thought at least, and way beyond my understanding of things at this point.

    There's a link off the LDN website for finding a doctor familiar with LDN treatment, there is not many on there but you may get lucky depending on where you live:
    http://www.ldnscience.org/find-a-doctor/search

    Leave a comment:


  • Sequoia
    replied
    Originally posted by mjan View Post
    So.. I take it LDN is approved now?

    And..do insurance pay for any of it?

    Thx Jan
    No, LDN is not approved for MS, and insurance does not pay for any of it. The doctors who prescribe it do so "off-label," which is an accepted practice in the medical community for many drugs that are approved for uses other than the one they're prescribed for.

    On the other hand, LDN is very inexpensive, so paying for it out-of-pocket is doable.

    Leave a comment:


  • knuckle
    replied
    I think LDN should be the first drug tried upon MS diagnosis and user experiences indicate it is more effective at preventing exacerbations than the CRABs.

    In the UK, where for-profit medicine and insurance do not distort the health marketplace, LDN is widely prescribed. If you go to www.LDNaware.org and click on the UK page you will find just about every MS organization supports LDN.

    Under the USA page all the major LDN websites are listed but no MS organizations because there is no money to be made in LDN. Despite 1000s of MSers who take LDN with good results, the NMSS refuses to support any meaningful LDN research because it would offend their big pharma sponsors. It's very troubling.

    Leave a comment:

Working...
X