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-   -   LDN Information & Check In (https://www.neurotalk.org/multiple-sclerosis/50240-ldn-information-check.html)

SallyC 08-12-2008 12:39 PM

Quote:

Originally Posted by herekitty1960 (Post 344965)
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 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! :o

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..:hug:

lady_express_44 08-12-2008 03:55 PM

Quote:

Originally Posted by Bearygood (Post 344955)
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.

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

Judy2 08-12-2008 04:58 PM

Good Luck with your LDN!!! I started low also and slowly ramped up to 3 mg. Any higher made for very stiff legs, so this is where I'll stay! That was the only side effect for me.

Be sure to keep us posted!!!!! :)

weegot5kiz 08-14-2008 04:09 PM

curious about something if I may ask a few of you same question, how long after taking the LDN did you start to notice a change, at the present time i stopped the other meds first and my spasm and muscle spasicicity was starting to build, being off the other meds yet now i am noticing they are not as sore this past two days or so the spasm in my neck are not as often, and i got energy, now here is my dilemma was it the other meds making me tired or LDn making me less tired, could side effects from other meds mess with my muscles or is LDN working i am so confused ok more so than normally

SallyC 08-14-2008 05:47 PM

Yes, It's the LDN..:D

I noticed the difference, the first day....I thought it was just placibo, but it lasted. Apparently the small dose is working on you...I'm surprised, but delighted.

The energy and lack of Fatigueness is due to the small increase in indorphins, I think. PwMS are usually very low in indorphins.

Keep up the good work, Franky .:hug:

Quote:

Originally Posted by weegot5kiz (Post 346747)
curious about something if I may ask a few of you same question, how long after taking the LDN did you start to notice a change, at the present time i stopped the other meds first and my spasm and muscle spasicicity was starting to build, being off the other meds yet now i am noticing they are not as sore this past two days or so the spasm in my neck are not as often, and i got energy, now here is my dilemma was it the other meds making me tired or LDn making me less tired, could side effects from other meds mess with my muscles or is LDN working i am so confused ok more so than normally


Twinkletoes 08-14-2008 07:31 PM

Frank, I'm confewzed too!

I actually felt a degree worse the first week.

It messed with my sleep a few nights and I had some disturbing dreams.

No cramps (have never had them). Minor dull headaches occasionally. Some achyness, but don't know if it's the LDN or just me!

I've been kinda crabby lately, but again, could just be me (don't ask DH, Lol!) Temporary numbness in new places.

I guess I'm really not any worse off than before LDN, so I'm planning on sticking with it.

Good luck Frank, et al! Nice to have a support group here on NT!

weegot5kiz 08-14-2008 07:37 PM

yes it is to have support on here Twink, I also had a few sleepless nights when i started it. like i said i have noticed a couple of slight changes, just going to keep on keepin on and see what comes of it

thank you Sally:hug: for this thread

lady_express_44 08-14-2008 07:55 PM

Quote:

Originally Posted by weegot5kiz (Post 346747)
curious about something if I may ask a few of you same question, how long after taking the LDN did you start to notice a change, at the present time i stopped the other meds first and my spasm and muscle spasicicity was starting to build, being off the other meds yet now i am noticing they are not as sore this past two days or so the spasm in my neck are not as often, and i got energy, now here is my dilemma was it the other meds making me tired or LDn making me less tired, could side effects from other meds mess with my muscles or is LDN working i am so confused ok more so than normally

I noticed a BIG difference in my spasticity pain almost immediately (within a few days), but I was on 3.0 mg from the beginning too. I had suffered with that pain, to the point that I had to wear braces on my limbs every night and many days, for almost 2 yrs. I have only had to use one brace, once, since I started on LDN.

It could be either thing that's helping you, Frank; going off other meds OR going on LDN. I waited several months to try weaning off Celexa because I wanted to know which drug was helping/hurting. Ultimately, I knew it was LDN that helped with certain things, and Celexa that caused me other side-effects.

After you've stabilized at 3.0mg or 4.5mg, you can try stopping it for a few days to see. :D

Cherie

lady_express_44 08-14-2008 08:00 PM

Quote:

Originally Posted by Twinkletoes (Post 346889)
Frank, I'm confewzed too!

I actually felt a degree worse the first week.

It messed with my sleep a few nights and I had some disturbing dreams.

No cramps (have never had them). Minor dull headaches occasionally. Some achyness, but don't know if it's the LDN or just me!

I've been kinda crabby lately, but again, could just be me (don't ask DH, Lol!) Temporary numbness in new places.

I guess I'm really not any worse off than before LDN, so I'm planning on sticking with it.

Good luck Frank, et al! Nice to have a support group here on NT!

Did you make any other med changes at the same time Twinkletoes?

I had some side-effects too, for the first few weeks. Are you drinking a full glass of water after each dosage . . . that was the step I was missing?

Some people take a little longer to adjust, apparently especially if their damage is a little older (2+ yrs). Let us know how you are going by the third week . . . it should all settle down by then.

Cherie

SallyC 08-14-2008 08:32 PM

Sorry Twink...I had vivid dreams too...still do, somewhat. Your doing well to hang in there. Since you are on such a small dose, perhaps some of your others meds are working harder in your system than the LDN???

:hug:


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