Just started at 4.5mg and feeling numb

Mary · Family Member Joined: Feb 09, 2005 Posts: 63

I started LDN on Feb. 12 and took 3mg for one month with no side effects. I didn't really feel any differences, maybe my mood was a bit lighter, but nothing significant. I just started 4.5mg (three nights so far), and today my left leg/foot is numb, like it's asleep. I'm a little freaked out and not sure what I should do. Should I just push through and see what happens, maybe this is temporary. I've read that sometimes your symptons get worse before they get better....or should I drop back down to 3mg.? I have no other trouble, no problem sleeping, no significant stiffness or anything like that. Any suggestions/help would be appreciated.
Thanks.

Aylish

CCmom · Family Elder Joined: Apr 26, 2004 Posts: 121

Hello, Aylish. I have been away from the board for awhile, and obviously, so has everyone else! How are you now? What did you end up doing? 3 mg. may very well be the best dosage for you. I hope this finds you feeling better and your problems resolved. Take care!

Kim
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Kim R.

renaudjba · Posted: Thu Apr 07, 2005 1:58 pm Post subject:

Dear Aylish,

I'm a 57 years old frenchman with RRMS since 1992, EDSS about 3. My english is not that good, so please to pardon my mistakes (and to correct them if you've got some bonus time!!!).

Your question is old, but I think you have still found an answer to your legitimate fears. I am very interested by the way you resolved the problem.

Did you remain on 4.5 mg, did you slow down to 3 mg as suggested by the first reply or did you try a 1.5 mg as suggested by the story I read on the Internet :

http://www.ldners.org/Articles/Brattleboro_Reformer.htm

Before starting LDN, I read a lot of testimonies and press articles. And your story reminds me of this one.

Thanks by advance

Porte toi bien.

We shall overcome

Jean-Baptiste

Mary · Family Member Joined: Feb 09, 2005 Posts: 63

Thanks Kim and Jean-Baptiste for replying to my post.

An update...I stayed at 4.5mg for maybe a week but was kinda freaked out by the numbness in my leg/foot so I dropped back to 3mg. Then, because I'm really not feeling any outward effects of the LDN I tried 1.5mg. for a few nights. I felt no difference from 1.5 to 3mg so I stayed at 3mg for a week or so. Then I decided to stop for a couple of nights to see what would happen (and one doctor, Dr. Lawrence I believe, suggests skipping a dose or two every seven to ten days or so). I felt no different from skipping a couple of nights (maybe a bit tired) so I started back at 3mg. Since then (which was only four nights ago) my sleep has been horrible. I'm taking it as early as possible (9pm) so I can maybe fall asleep at a decent time but I'm not drifting off until 2am or so. So...I'm very tired. I'm hoping things regulate over the next week and then I guess I'll stay at 3mg. with no skipping.

I don't know....I know not all people "feel" the effects of LDN and all I'm really aiming for is to stop the progression of the MS, but I'm really afraid I'm not doing something right because I don't feel anything at all. No LDN, 1.5mg., 3mg....it's all the same. I don't know, I just hope I'm doing it right, that 3mg. is right...

Thanks again for asking.

Aylish

JoyceF · Posted: Sat Apr 09, 2005 9:47 am Post subject: Hi Aylish....

Not sure if I asked this of you before but where are you getting the LDN from?

Mary · Family Member Joined: Feb 09, 2005 Posts: 63

I got it prescribed by my family doctor and get it from Smith's Pharmacy in Toronto. I get it in 1.5 mg. capsules and the filler being used is calcium carbonate. I have at least six weeks worth of the precription left right now but at my next order I'm thinking maybe I'll ask for 3mg. capsules. Maybe it's too much filler taking 2 tabs instead of 1...?

JoyceF · Posted: Sat Apr 09, 2005 4:34 pm Post subject: Hi again Aylish...

Oh boy, of course I I have never used Smith Pharmacy but I think they are pretty reputable. My only comment is on the filler itself. I have heard it said over and over that CC is not the best filler to use as it tends to eventually pack too tightly, thus causing the capsules to become slow release rather then fast release. Of course I have no proof of that and others will dispute it but why not try a different pharmacy or at least ask them to try maybe Avicil or something. I think that the reason some will say that the CC has not been a problem is that it doesn't always happen but I'd be a little leery of it being a possibility. Avicil is what my capsules have and it has been working well for me for a few years. Just a thought for you anyway. I'd ask for the 3mg too if I were you and hopefully you can ramp up to the 4.5mg dose which is what Dr. Bihari thinks is the ideal dose. Not everyone can handle that dose for some reason but most should be able to.

Mary · Family Member Joined: Feb 09, 2005 Posts: 63

Thanks for the feedback. I am going to call the pharmacy and see if they can use Avicil or something of the like....can't hurt to try. And it's such an affordable drug I can ditch the remaining six weeks worth and get a fresh month's supply. Again, it's hard to measure because I don't feel bad, I just don't feel anything.
Thanks again!

matilda · Newbie Joined: Jun 20, 2005 Posts: 3

We're looking for a doctor in Toronto who will prescribe LDN for my husband. He has PPMS and was diagnosed a few months ago. He has been following the Best Bet Diet and has no fatigue. However he's still wobbly and his walking is getting worse. Does anyone have some Doctor's names for us? We would really appreciate it.

JoyceF · Posted: Tue Jun 21, 2005 5:15 am Post subject: Hi Matilda..

I have a doc on my list from Markham and one from Toronto. Just e-mail me and I'll give you what I have. I really don't want to post names and phone numbers here. wkendz32@hotmail.com JoyceF

watergypsy · Posted: Thu Jun 23, 2005 8:53 am Post subject:

Hi everyone

I hope you've got the dose right now Aylish - I thought I had mine sorted but the last three days have been horrid. Legs simply will not do as they are told!. All the other symptom improvements are wonderfully constant but the legs just don't want to play ball!

My question for you all is :- Since we need quick release why do the pharmacists use a filler at all?

This ? may simply show my total ignorance of medicines (never used them before ms) but I would like to know because I am wondering if at the end of a batch, something makes the entire capsule less effective - like stale filler perhaps?

All replies gratefully received

JoyceF · Posted: Thu Jun 23, 2005 11:15 am Post subject: LDN filler

Hi there,
The way I understand it, Naltrexone in such a low dose of 3 or 4.5mg is so minute that the compounder just needs to be able to fill the capsule with something just to fill it. I've heard it said that our portion of Naltrexone is as tiny as a grain of sand or something...strange huh? That's why it's kind of hard to take say take a 4.5mg capsule and try to divide it into a smaller dose. One never really knows where the actual Naltrexone is and the filler. Not sure if I am explaining myself correctly and if anyone else here knows anymore about this, please post. JoyceF

watergypsy · Posted: Thu Jun 23, 2005 3:59 pm Post subject:

Thank you JF - that seems perfectly logical. I have ordered a fresh batch and hope that might sort the problem.

lady_express_44 · Posted: Tue Jun 28, 2005 2:06 pm Post subject:

I have been using liquid LDN since May 20th, and am very pleased with the results.

I started with 3.0mg, and have recently moved up to 4.0mg. I like that I can alter the dosage in small increments, I am on the PUREST dosage of Naltrexone (no fillers what-so-ever), and it goes straight into my blood stream. There are a few more initial side-effects though; nausea, insomnia, dry mouth. I've learned that the nausea is remedied by a full glass of water guzzled directly after the LDN liquid. All the other side-effects were gone within a few days (of starting or upping the dosage).

Some people have expressed concern about the shelf-life of the liquid form of LDN, but Dr Bahari has advised that the liquid lasts up to 100 days, if kept refrigerated.

Bubble-gum is the best flavour Laughing

Cherie
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<div><span class="postbody">''In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices.'' </span><span cla

watergypsy · Posted: Tue Jun 28, 2005 3:03 pm Post subject:

Lady E,

Liquid naltrexone sounds a brilliant idea. I change between 2 & 3 mg (carbonate filler) up to twice in a week and confess it is a bit hit & miss. Please can you tell me, if one uses the liquid, how is it measured to ensure accuracy?