morning all got my script, going to go through skips, even my doc knew of skips too and the ldn he said its worth a try, starting me at 1.5 for starts and we shall see, i really hope it does me good and would love to cut down on other meds, this could be berry berry good

WooHoo!!!! Good wishes for You..:)

Congratulations and good luck, Frank!! As I recall, you have spinal lesions . . . and that damage is where I saw considerable benefit from using LDN.

Please bear in mind the information I provided Twinkletoes previously though . . . you will have to get up to 3.0mg - 4.5mg in order to realize significant benefit, at least according to Dr. B.

Sally, there is a lot of good information in this thread, and I would like to propose that we make it into a sticky. What do you think?

Cherie

Not a bad idea....Just don't want stickys to take over the board like they do at MSW..:winky:

Hmmm . . . yeah, good point.

I know patients, with various conditions/ailments (like cancer, Crohn's, Parkinsons, ALS, etc.) are often looking for information on LDN, and we (with MS) seem to have the most experience with it. It might be easy access for them (as a sticky) as well . . .

I guess the moderators might know the "demand" for this information better, so perhaps they can decide.

Cherie

make it a sticky in the medication forum?, because the doc said he was giving it to a few others who do not have MS and its helping them also at this dosage, just a thought, just got off the phone with skips its being processed, cool

i think keeping it here on ms would be the best thing. there is no way we can do a sticky on the medication for each med.

any dr can use the search the feature and find the info here. it would make more sense, since this thread is mainly about how ldn works for people with ms. :)

let me know what y'all decide. i would like to see it as a sticky. i do refer our pd members who ask about ldn to the posts here on ms.

i do agree sally, we don't want too many. with ldn, there have been many threads and posts about it, but they tend to get lost.

Good luck, Frank!!

I think a sticky here on MS would be nice, Yappy, Thanks..:hug:

I would agree with that too, Curious.

At first I just thought this would be about the article Sally posted, and it wasn't until near the end that it seemed to make sense to make it a sticky. I wasn't thinking about the other conditions, in any of what I wrote along the way, and I would hate to lead others astray by making it a global medication sticky. At least if they have to come here to find it, they will know the info provided is potentially specific to MS.

Thanks for thinking ahead!

Cherie

Woohoo Frank and Twink!

From punkduzzle...As far as I know, Punk there is no problem taking LDN with Benzos or Zanex?? Beer is fine.

Good luck with your Doc..:hug:

Received my first bottle of LDN in the mailbox today! Woohoo!

FYI, here is what's printed on the info sheet:

How is This Medication Useful?
This medication is an opiate receptor antagonist. Low dose naltrexone can be used in the treatment of some forms of cancer, and immune system or CNS disorders (i.e. Alzheimer's and MS). It may also be used to treat other conditions as determined by your doctor.

Are There Condition or Times When Its Use Might Cause More Harm Than Good?
Inform your doctor if you have liver disease (including hepatitis) or kidney disease, or if you: are pregnant/trying to get pregnant, breast feed, consume alcohol, have experienced an unusual or allergic reaction to any medications (including naltrexone), foods, dyes or presevatives. Caution should be used if you are taking opioid agonists, i.e. narcotics such as Percocet, Duragesic, or morphine. Low dose naltrexone should not be taken until opioid agonists are completely out of one's system. Patients who are taking immunosuppressive medication on a permanent basis are cautioned against the use of naltrexone.

What Side Effects Can Be Seen With Its Use?
Most common side effects associated with taking naltrexone are: sleep disturbances, abdominal pain, agitation, anxiety, arthralgia, dizziness, elevated hepatic enzymes, headache, hepatitis, insomnia, lethargy, myalgia, nausea and/or vomiting, or suicidal ideation. Low dose naltrxone has shown minimal side effects.

How Should This Medication Be Given?
Naltrexone should be taken once daily at bedtime.

What Other Information is Important About This Medication?
This medication should be stored at room temperature and protected from extgreme heat or moisture. Keep all medications stored safely and out of the reach of children.


BTW, the cost was $29.79 for ninety 1.5 mg. capsules. Shipping from Skip's Pharmacy in Boca Raton, FL was $5.75. It arrived in less than a week.

Hey, I think the insert thingy is new. Sounds like they're covering all the bases and their azzes, with it...LOL.

Good going, Twink..:)

From what I've read, the main conflict for using Naltrexone with narcotics and alcohol is that it makes a person much more "tolerant" of these substances , ie. alcohol and narcotics may be less effective. The concern is that someone might be tempted to take TOO much of either of these, if it isn't working for them at their normal dosages/ingestion levels.

This is probably much less of a concern with Low Dose Naltrexone . . . but is still a warning.

Codeine has the same concern, and some people don't think of that when they take cough medicines or Tylenol with codeine. Something to remember . . .

Cherie

Yes, these warnings are taken from the warnings for the High Dose Naltrexone and most likely will not be a problem with the LDN.

Cheryl is right, in as much as, mixing LDN with opiads will, likely do no harm, but may reduce the effectiveness of the opiad and perhaps the LDN, as well. I've taken both at the same time, because I forgot to quit taking the LDN while taking an opiad, and both worked just fine....but this was a temporary event, too.

The precautions are there and, like with any other med, the possibility of harm is always there, but, the likelyhood is very small, with LDN, IMHO..

Thanks for the sticky, my wittle Monkey Friend..:)

you are welcome sally.

:hug:

well talked to my neuro today and she will not Rx LDN... she says and i quote "it doesn't work" :rolleyes:
i wanted to say well i know of quite a few people that would disagree with you... but i figured id just ask my PCP for a Rx for it.. ya know exhaust all options before i have to start a huge fight with my DRs..

got my LDN today, twink I got same warning precautions with my package. Now I have to wait for darvocets to wash out of my system about a day and the toradol, the pharm said wasnt a big worry but he did say he would wait a day on that, soooooooo my back and kidney area are really sore so will try to calm those areas with heat and ice and meds and just try to be patent to start my new meds

Twink have you started yours yet?

again thank you Sally for starting this thread, even if it does not work for me it was an option I had heard little about, but your thread helped a lot in finding more info and opinions of others

thanks :hug:

You are so very welcome Frank..:)

I hope it does help you in some way. I'll keep my fingers crossed.:hug:

Hi Sally! I've started the ball rolling for me to get my prescription for LDN. I have to fill out some paperwork and send it back first.

Do you know if you can take LDN with Zoloft? What about Neurontin and Baclofen? I know these are all questions I should ask the doctor during my phone session but I want to talk and listen fast since it's a "per minute" charge!! :o

Kelly I called and picked my local RX's brain, about all my other meds and this new one, he knew about LDN and double checked it all out with me

Yeaaaa, Kelly..:) Yes, yes and yes to the meds you mentioned. I took Paxil and now Prozac whilst on LDN and Neuronton and baclofen for a short while, but found I didn't need them anymore. I'm still on Prozac..;)

Any other questions, be sure to ask.....and good luck..:hug:

I think you are very brave to go off those strong meds to try LDN, Frank. I hope that once you ramp up on LDN, some of those problems (that you are currently using the meds for) disappear.

I wasn't on anything else, except Celexa, and I was able to ditch it eventually. I did have a LOT of spasticity pain though, for two years prior to getting on LDN. It helped in that way for me.

Cherie

All the best to you three newest LDNers -- Twink, Frank and Kelly!!!! I pray it does some good things for you along with slowing down this Monster!!

Kelly -- I've been on Zoloft for years with no ill effects between the two. GOOD LUCK!!!!!

I was originally on Celexa full-time because they thought it might help with the relentless fatigue (even though I tested "not clinically depressed"). After I was able to ditch it, one year into LDN, I literally "dropped" 25 lbs, with no effort what-so-ever. The fatigue let up considerably (probably because the LDN was helping for that), I got back my libido, and the tinnitus stopped.

It's amazing how all these drugs we take can mess up other things.

Cherie

thats interesting Cherie, Lately I have been weighing out, the side effects from X amount of pills every day forever? verse the side effects of MS with out all these pills, some of these meds are strong stuff my logic tells me this can not be good pumping that stuff in every day for years on end, and if I am gonna take something every day, maybe i can get it down to just LDN, thats my goal,

I'm sorry for hopping on this band-wagon, even though I do not have MS. I have RSD, which is a neurological pain disorder. I'd like to think that this med could help RSD, too. I know they are doing clinical trials for LDN in Fibro. I have heard this can be useful for really ANY autoimmune problem. And RSD is autoimmune. Does anyone have any luck with Doctors in MN who would prescribe this? Thanks so much!!

Cherie, do you think a person would need to take LDN a whole year before going off the Celexa?

Good luck Millerprof! I'd think it was worth a try. BTW, this is an LDN thread so you are welcome here!

Try contacting Skip's Pharmacy in Florida. He is fairly well connected, and has a website online.

Cherie

I guess it depends on how "dependant" you are. I didn't really use it for depression, except during PMS time. Celexa can be taken for just 3 - 10 days a month though (for that purpose).

Once I got up to between 3.0 mg - 4.5 mg, I probably could have dropped it fairly quickly, but I had a really hard time withdrawing. It took me three attempts just to get through the "withdrawal" side-effects . . . but I am VERY sensitive to going on, being on, and weaning off ANY med. (That's why I don't even try many to start with).

Cherie

I did not know Celexa was for occasional use. YLSNED! (you learn something new ever day)!

Cherie, this is dumb question, but I haven't had much experience with prescription drugs. I managed to live 50 years w/o them!

What are the possible side effects of quitting an AD? Depression is the most obvious, but are there others?

Twink, if you have been on an AD for awhile, there is a possibility of withdrawal sx with some. I was so afaiid to go off off Paxil, because of all the scary stories out there, but I didn't have a problem at all. Some do though, so check with you Doc, before dropping the AD, suddenly.....you may have to taper off?

ATTENTION PLEASE: Noone should drop any of their prescribed meds, without informing your Doc..:eek: LDN will not take the place of your other Meds, I don't care what anyone spouts or brags. You may come to find that you don't need your AD or Muscle Relaxant...etc.., after seeing what LDN does for you, but please don't think that LDN will take the place of all your other meds.

I agree with Sally on not doing anything until you talk to your doc. My doc was very much involved in my choice to stop Celexa, and in helping me withdraw from it.

In all honesty, I can't remember all the withdrawal effects, but I know it was hard for me. I basically followed my doctors instructions, but if I remember correctly, I tried to go even slower then he suggested (just because I know I am so sensitive). I don't even think I got 1/2 way down, over several weeks, before I thought I was losing my mind. That's about all I remember . . . a majorly messed up head (which explains why I can't remember :D).

That was my second attempt, as I had tried several months earlier and had the same problem. My doc ended up putting me on Wellbutrin, and I was supposed to ramp up on that while I withdrew from Celexa. That didn't seem to make much sense to me though :confused: . . . so I just went on the lowest level of Wellbutrin that he started me on, and continued on the lowest level I had gotten myself to with Celexa.

As I weaned off the Celexa (over about three weeks), I also did the Wellbutrin (I think alternating days, or something to that effect). When I finally got off, everything (in my head) was good again.

I know some people have considerable difficulty (maybe even danger) with weaning on some drugs, especially AD's. Not something to play around with, without your doctors involvement!!

I don't even think I needed the Celexa for PMS after that, and it had been a lifelong problem for me. I may have used it a couple of times, for a few days, but my hormones had balanced out a lot by then.

Cherie

it 08-08-08, and well, what a good night to start my LDN

Sounds like a plan, Weegot! Much success!

:hug:'s

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! :o

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