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:

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

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!!!!! :)

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

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:

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!

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

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

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

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:

Thanks Cherie, Sally and Frank.

I didn't know I was supposed to drink a full glass of water with my capsule????

I'll do that tonight for sure.

Nope, I didn't make any other drug changes.

I picked up that tip somewhere, and added into my "risk assessment" document for my doc, but then promptly forgot. :D After a couple of weeks of nausea, I re-read the instructions and saw to take it with water. Never had a problem after that night.

I take liquid (although the instructions were for any LDN), and I think it made a difference especially for that method. It might not make any difference for the capsule, even though they recommend it. :confused:

I forgot to mention throughout this thread (although Sally may have) that LDN only stays in our system for about 18 hrs, so if we ever have to go off for any reason, we are "clean" by the next day. This is also the reason that symptoms that LDN helps for, will start creeping back within a few days.

Also, did any of us mention to take the LDN after 9:00 pm (or is it 11:00, Sally?), cause it works with our sleep patterns? Most people who've done the research know not to take it till late already (and I take it after midnight, as a habit), but for those who may have forgotten . . .

Cherie

Yes, Cherie, thanks for remembering. Take your LDN before bedtime....preferredly after 9pm and before 1am. The endorphins are replenished after midnight...in the wee hours, usually while you sleep.

ok so I guess something is working, this was my morning

i cleaned out the pond, filled bird feeders,help garbage man with garbage, went to docs then went to store walked to pharmacy then to back of store got some stuff bought that stuff, then back to pharmacy and did it all with out a cane or a cart, i will be honest towards the end i got a bit sore and tense, but wowser, its a step in right direction so am gonna keep hoping its the new meds we shall see

thank you thank you thank you thank you:hug:

It sounds like you're one of the lucky ones, Frank. Wowser, is right!!:)

Don't any of you others get discouraged. LDN will work for
you too, just at different ways and speeds. RRMSers, usually
get the best benefit from all MS Meds. That's because they
usually don't, yet, have permanent nerve damage and are
still able to re-myelinate.


I told you that, when I started on LDN, I was already SPMS and
so, I didn't get right up and throw away my cane. I did,
however, feel stronger, less fatigued and dizzyness, when
closing eyes, was gone.....and I felt Great!! And....my MS
disability has not progressed in the 5+ yrs, I've taken it.
No new symptoms and no exacerbations.:)

Remember.....To stop or slow the progression of disability is
the main benefit of LDN. It is not a cure, although, to a lucky few, it may seem that way.. ...Keep the faith...

Good wishes too all..:grouphug:

cane isnt going anywhere too soon, if I had one more stop i would of needed it, but it was nice to get a few things done before i needed the cane, as to my normal, wake up needing it yet still have those things to do. so i am glad for today lets see how tomorrow goes,

peace

good morning ok I have seen more than few on LDN post they have vivid dreams, I cant recall what it was about, but wowsers. lol i probably looked my one dog that use to dream he was running lol I noticed I seem to be getting to sleep earlier than before, whether its me or the med either way sleep is a good thing, so coolieO's

happy saturday

I don't have my LDN yet but I will soon.....

That's the one side effect that sort of scares me...the dreams. While I don't mind vivid good dreams it's the scary ones that disturb me. I just hope I don't have any of those to contend with. I've done my time with having bad dreams..don't want any of that anymore!

They aren't normally scary dreams, Kelly, just VIVID ones. When I wake up, especially after my afternoon nap, I swear I've lived another life for the last three hours. :p It's like watching a movie, but more like an action not horror one. :) I don't get those dreams at night though. :confused:

Frank, something else I forgot to mention . . . DO NOT OVERDO THINGS, just because you can. :)

I met this lady a few months ago who started using LDN, then got back into the gym within a few weeks. She began doing these lively neck gyrating exercises (can't remember; took up trampoline or something like that), and sure enough, she jarred her spinal lesions, which SET OFF an attack. :mad:

If you are one of the lucky ones where it helps symptoms (which is a "bonus", not the "goal" with LDN), then it is easy to push yourself too far. The MonSter is still lurking, and the LDN will not protect us from ourselves. :eek:

PACE YOUR NEW-FOUND ENERGY very carefully, especially in the beginning. You will learn new limits, but you STILL have them. ;)

Cherie

Hey Frank! I'll buy your plane ticket if you will come and clean MY house!!!! I don't have that surge of energy, darnit! But sleep is going better -- I caught 8 hours last night and didn't have any memorable dreams.

Kelly, like Cherie said, the dreams are vivid and somewhat disturbing b/c of content (for me, anyway), but not up there with nightmares.

I'm close to 2 weeks. Doing okay now after I got the first week behind me. Not so lucky as Frank! Now if these allergies would leave me alone. ACHOO!!!

Have a great weekend, everyone! :hug:

cherie you are right am a sloth today can not for the world get anything working or going, i am dead tired. I know pace oneself

Well, you may-as-well learn this lesson while you are on 1.5mg, cause if you are seeing improvement already, 3.0mg should eventually allow you even more pleasures. :)

I remember the 1st time, in 2 yrs, that I had energy to take my daughter to the park, after starting on LDN. Yeah, I paid for it . . . but I got to do it too. :D

After about a year on LDN, I took a long vacation by myself in the US. I flew, trained, flew, bused, trained, flew . . . dragging bags behind me everywhere I went. I visited a whole lot of people, and had heaps of fun. Yeah, I paid for it for the next 6 weeks after I returned . . . but I GOT TO DO IT!! :Dancing-Chilli:

The good news is that when you recover from pushing yourself a little too much yesterday, which should happen by tomorrow, you will be right back to feeling like you are able to push yourself again. It's so cool. :)

Cherie

In addition to what Cherie said, I also found that I healed from injuries faster, too. :)

And you may notice Your hair & nails growing faster...I and many others do.:D

I hope this week will be a good one, for all you LDNers..:hug: Let us know if you have any questions.

I have been gone for a few weeks, and I am now trying to catch up with all of these posts. It sounds like some of you are experiencing some success with LDN. I just saw in the MS magazine that 2 presentations occurred at the Neurology conference last spring that discussed the preliminary results of LDN trials. But that is all the article said. Is anyone familiar with these presentations or their conclusions? I need as much ammunition as I can get for when I have the LDN talk with my neurologist.

Here's the latest news that I can find, Barb.

http://www.lowdosenaltrexone.org/ldn_latest_news.htm

I have my consultation Thursday at 1:00 PM!!! Hopefully I'll get my prescription and be able to start on it soon. I'm excited!!

WooHoo, Kelly. I hope it goes well. :hug:

Wow! I had a Frank day! Finally!

I was busy all day long, then still had the energy to cook tonight. I made hamburger stroganoff -- I even tried out my new garlic mincer. And Frog's Eye salad. And boiled some chicken for a future chicken salad.

And after all that, I even cleaned the kitchen!!! *curtsies* Thank you, thank you verry much!!!

Gee, just think of all I could get done if I had this steady energy (not hyperactive) every day! I might could even get organized or something. What would THAT be like? :confused:

Too cool, Twinkletoes!! :highfive:

Remember that you are likely to be a little more worn out tomorrow . . . but wasn't today great!?! :p

Frank, how are you making out since you had that one rough day . . . we never heard if you felt better by the next day?

I'm am looking forward to see how things go for you two on 3.0mg.

Good luck on getting the rx, Kelly.

Cherie

WooHoo Twinks, I hope this trend continues and only gets better as you titrate up on doseage.:)

How are you doing, Frank? Have you gone to 3mg yet?

Looks like it is my turn.
 

I have been diagnosed with MS for 1.5 years now. I am in the secondary progressive stage of the disease, so I have never had to take any of the DMDs. I have just been prescribed LDN, and Skip tells me that I should receive my Rx by Friday. I am almost afraid to hope, but it sure is nice to know that at least some of us are having good luck with LDN. I’ll keep you all posted.
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Welcome to the LDNers Club, Marion.:D At What dose will you start?

I wish you all the best with your start of LDN....and, yes, please do let us know how it goes..:hug:

Dose? You know I was just so happy to be told that I could have the Rx that I forgot to ask. I guess I'll find out when it gets here.

Sally, thank you so much for the information and encouragement. It really means a lot.

:You-Rock:

Welcome Marion and congrats on being able to get a script for LDN, seems a lot of MSer's have had issues getting it

Rochelle I am so happy to hear it may be helping hopefully you didn't over do it, like I did, if ya did, sorry, but try to rest and don't worry, you and me may need to figure out how many hours of work a day is overdoing it, and even that sounds better than how i do things now, I do a little here then ease off then go back finish if i can and rest and so on and so forth.... be nice to see its ten A.M. and know i am good till 4 pm or 2

well I have been sore, my back really hurts still not sure what i did probably moving this dang freezer, who knows as for 3 mg the next day i was slow to get going will try it again tonight been 3 days

my only issue is my involuntary spasms, the race track is back, right arm right foot or leg then over to the other side and continuing around my body so am hoping 3 will ease this up some and soon or i may have to go back on one of the other meds klonopin, it did stop that from happening

marion, welcome to the club!

When I talked to Skip at his pharmacy, he said he always starts MSers on 1.5 mg.

month #1 = 1.5 mg.
month #2 = 3 mg.
month #3 = 4.5 mg.

You and I got diagnosed just about the same time.


Frank, why did you bump your dosage up to 3 mg. already? It's none of my business, I suppose. 1.5 mg. ... 3 mg. .... 4.5

Nope, nevermind. I withdraw the question. Why should I care?

You'd just as well know the truth:

Frankly, my dear, I don't give a Gram! :p


:ROTFLMAO::ROTFLMAO:
:ROTFLMAO::ROTFLMAO:
:ROTFLMAO::ROTFLMAO:


Give your back a break, why don't ya? Quit moving freezers for goodness sake!!! Sheesh, how many times I gotta tell ya? :rolleyes:

You are too funny Twink...LOL!!:D

Untill you get to the dose that is your dose, its all a trial by error.

I went up and down and up and down several times until I settled on my dose of 3mg and then, 2 yrs later went up to 4.5mg and here I'll stay.:)

Ro I went up to hopefully help, I stopped 3 other pills and one SX is rearing its ugly face again and was hoping 3 would alleviate it

Well, I had my phone consultation today and I am so excited to begin this therapy!!!

Sally, I'll be getting mine from Skip's and will start out on 1.5 for three weeks, then 3.0 for three weeks then 4.5 for three weeks. He said I will know which dosage I feel best at and that's where I'll stay.

Some of the benefits from LDN were unknown to me - like the loss of appetite (I think I'd take it for that even if it didn't help anything else!!). He told me that if it got to the point where I forgot to eat (yeah...right) or got too thin that I'd have to consider going off of it. :rolleyes: Don't think that's ever gonna happen but....OK.

He also told me that it didn't matter what time in the evening I took it just to be consistent with whatever time worked for me (in the evening).

I'm hoping to hear from Skip's today or tomorrow and have my prescription by next week! :D

Good luck, Marion. I am close to a few people who are dx PPMS and still got considerable benefit. It's all relative, of course, but for someone who hasn't sat up out of a bed in two years, suddenly being able to sit in a wheelchair for several hours a day is GREAT.

Cherie