Sorry for the hard lesson, Marion. I've often wondered what would happen if I just stopped taking it but I've been too chicken to try it. Now.....I won't. ;)

I called Skip to see if lowering my dose to 3 mg from 4.5 would cause any problems and he said it shouldn't. But, if I noticed things changing for the worse I could just bump it back up to 4.5 mg.

I wonder if you'd have the same negative reaction if you tapered off instead of just stopping cold turkey? I'm not planning to stop anytime soon but Marion's experience made me wonder if slowly reducing the dose would cause problems.

I don't think so Kelly, LDN is not that kind of Med..:) DD stopped taking it twice and had 2 attacks. She will never go off of it again.

Apparently we need those endorphines!!! Anything below 2 doesn't work and anything above 5 is too much.:)

4.5 has been working for you so you may notice a diff with 3, but I don't think so. If 3 seems ok for you, just stay there. :cool:

Kelly, I never go up to 4.5 mg. Too much drug for me. It caused my spasms/and or tremors to increase.

Once I got up to 3.0 mg I was fine. I have been off it due to medication, and know I need it.

I am just on 1.5 mg. I can't wait to go up to 3.0 mg again. I have been on that amount for over two years and felt great. I need those extra endorphins to keep me calm, no mood swings, and it keeps the aches and pain away, like I said a few pages back.

LDN and Caffeine, my two drugs of choice. :) I have been easing away from sugar and fats. I don't like alcohol, or how it makes me feel, so I need the endorphins. :D

Marion, that was a hard lesson to learn on a road trip. I hope you feel better now and are getting back to normal. :hug:

Hi Carol M, with summer coming I want to make sure I am on LDN too.

RoadAction13, The drug LDN will give vivid dreaming but it is the mind that sets the stage of what you dream. It may be that you see it more colorful or remember it better. JMO

I agree with spasms and similar problems can occur if you can't take the 4.5 mg dosage. Are you RRMS? They say it happens to those who are RRMS, more spasticity at the higher dosage.

I opened the 4.5mg capsule, sprinkled 1/2 in small measuring cup, put some water in, stirred it, drank it before bed. Took the other 1/2 still in capsule last night so say 2.2mg. I pushed my daily 1.2 miles in wheelchair, swam 10 laps, did 1 set of curls, cleaned house, and just barely slept the way I would've without all that exercise. I did have interesting dreams which is one of the 2 reasons I want to take it :) Heck if daytime is the same ol everyday, why not enjoy dreams.

well, it may be my mind that's giving me nightmares, but I'd be very happy not to remember them or have them remembered less colorfully!!

Yeah, I'm RRMS. I dropped to 3 two days ago and my neuropathy seems already less bothersome - could it happen that fast???

lv jd

Sure JD, it could happen from one pill to the next. I took one extra 1.5 mg with my 3.0 mg and it caused bad spasms on that one nighttime dose. So back down again the next night. I find I have to take it 2 to 3 hours before bedtime. I go to bed late and perhaps my body takes longer to metabolize the drug.

I think it can accumulate too in our bodies, maybe too much absorbed, or not work as well over the years of a steady dosage, JMO. So going a bit lower for a few days may be a good thing for many people.

When I worked, I took Provigil so I could drive the long way to work and back without falling to sleep at the wheel. It worked and then seemed to stop. So I stopped it on the weekends and just took it on Monday to Friday and it worked again.

When we use drugs off-label, from the real purpose intended, we cannot be sure how it works in our bodies. So like with many medications, people have to take different dosages, or at different times, to work with our own unique age, body size, other medications we take, and how our bodies use the drug.

@Eddie,
I think you better take the whole pill of 4.5 and stir it well in a bit of water. Then take half of that paste water, which is 2.25 mg. I say this because my pills I have put in with sucrose or avercil (reg. filler like paper, and cheaper) some get lactose-free fillers, but my point is that they do not have to mix the LDN with the filler in the capsule. They can fill the capsule with the drug and then add filler in different machine after, to suit people. It can double the cost, btw.

So you left 1/2 in the capsule, and you took half another night. That other half could have the full dosage in the bottom of it. You may be taking filler only one night and LDN 4.5 mg the next. I can see the color of the drug and filler in my capsules, clearly two different colors.

We are getting the LDN amount prescribed, that we asked for, but the filler is put in like a cotton on top of a Aspirin bottle. To take up space because the drug is such a tiny amount of a 50 mg pill (as an example). Just a tiny chip to get 4.5 mg in each capsule.

Do you get my meaning? Some people order a 50 mg pill (like in Canada or online places) not Skip's. They crush it, and add 50 ounces of distilled water and stir well, and then refrigerate it. They use a medicine dropper, they shake first, and nightly take a dropper full of the dosage they take. I believe it lasts one month.

@Carol M, do you do it this way? Someone on here did, Lady Express did I know.

All just my opinion. :)

Hi Lady,

When I first started taking LDN I got the liquid version because I hate swallowing pills. It only lasts a month, as you mentioned, and it got annoying having to pick up more every time I turned around.

I switched to the capsules, which, as it turns out, are pretty small. I go to a compounding pharmacy and they use the pure naltrexone powder with avicil as the filler.

C

Wow Lady what a great CHEAP method dropper is! A single 50mg pill = 20 2.5mg doses which costs squat! And if it lasts 1 month mixed, that's plenty!

My capsules when I open them have just 1 color powder (pink) which looks like a crushed pill cause there's chunks so, if I split it, it's all Naltrexone no fillers or they're blended & compressed. I love the dropper idea.

Pink?? My capsules are clear and filled with a white powder. Naltrexone + avicil.

C

My 1.5 mg capsules (from Skip's) are pink. My 4.5 mg capsules are red. Maybe the 3.0 mg capsules are white (or clear)? I'm sure it's the capsule itself that's the "color" and not the medication within. Maybe Eddie gets his rx from a different pharmacy?

Kitty,

I'll bet you're right about the capsule itself with the colour. Skip probably colour codes the different strengths that way. My pharmacy goes with clear for each different strength. (Both the 2 mg that I started out with and now the 3 mg are clear)

Eddie said he broke his open and it was pink. That's what I was surprised about. Maybe his pharmacy colours the powder? or the actual 50 mg pills are pink?

C

I just looked at naltrexone 50mg on walgreen's site and they're beige. Now you's have me wondering. A call to Skipps will answer it and yes it's pink chunks, fragments, powder inside my 4.5mg.

I took a whole 4.5mg before my 1.2 mile push in wheelchair today & also took a 5mg Marinol (synthetic thc) and i'll report that for those that don't take ldn cause they're affraid it'll block pain meds, i'd give it a try. Now lets hope it doesn't interfere with sleep tonight.

I always get 1.5 mg from Skip's. Script says 3 capsules at bedtime. I can play with the dosage this way but it costs more for more caps.

I take two which is 3 mg. When I used to get the 1.5 mg with Avicel filler in a clear capsule it was pink. Now my clear capsule with sucrose (Domino sugar) is white.

I opened the the ones that were pink and put in applesauce on a tablespoon to get it into me faster. Capsule take time to dissolve for me. It was pink inside, so I think the Avicel is pink.

Fillers of Lactose is white and so is sugar. If you get Calcium carbonate that does not work as a filler, not absorbed is whilte. And never get a slow release formula.

Old picture of Avicel capsules (pink). Video doesn't work just the story.

http://www.lowdosenaltrexone.org/wonder_drug.jpg

Thanks Lady & folllow up from yesterday - I had spasms all through the night. I know opiates stop spasms from when I had i.v. something so possibly the 4.5mg blocked too much. I fell asleep quick, but woke up 4, 5, 6 ect. The marinol i had left over from last yr & was a test.
Busy day today just had to say that about spasms which I read once someone said same thing when they take too much ldn.
ed

Eddie, I got spasticity in my legs the first time I increased my dosage from 3.0 to 4.5. I had to stop and try it again several times before my body finally tolerated it. Anything more than 4.5 will definitely cause spasticity.

Hi,
I talked to My Neurologist, first time since dx. He said he would be willing to let me try LDN. He says he has one patient on it and they are doing fine. He is checking on the dosages and said it has to be compounded? I also have Hashimoto's thyroiditis and take medication after I had the one side removed because of a solid nodule. He also put me on clonazepam, for my tremors and leg tightness. Also got another prescription for physical therapy, so I can try out the other one, to see if they have any ideas.
He talked about Lyrica, I told him it made me hyper and I fell easier on it. He made me walk, and he said he didn't want me walking any faster than my dizzy slow walk.
He also said to try the clonazepam first, then he would let me try ldn. After next Mri, which I think it will be November, if any new spots he would talk about inferons.
I really like him and I can tell he is listening to me. If I just could have saw him in 2007 when I first had lesions, and more new lesions, maybe we could have got some of this stopped.
Nothing I can do now, He says the dizziness is here to stay. Fun, Fun, it just bothers me when I am trying to do all my chores at home. So much for my relaxing retirement in a few years.

I know how you feel, Deb. I sort of wonder how I'll be in 10 or 15 years if I have this hard of a time getting around now. But, I can still walk....albeit slow and wobbly....so I'm not complaining. But I can't help but think of the future.

I'm so glad your doctor is open-minded enough to let you try LDN. It can't hurt and it might help. I can't figure out what these doctors are so scared of with LDN. Are they afraid it might just work and they might have to admit that a med that is affordable, doesn't produce nasty side effects and doesn't make doctors rich in the process is working? :rolleyes:

Hi Deb -

Yes, it does come from a compounding pharmacy.

I use Bayview Pharmacy:
http://www.bayviewrx.com/

They will ship it to you.

Also, I have taken LDN and clonazepam at the same time; they are very different drugs and do not seem to interact with each other.

Good luck!

Yeaaaaa Debw. Welcome to the club.:hug:

Got an E-mail from Bayview Pharmacy. Sounds like if I get a prescription, I can just fax it to them and they can take care of it for me. They sounded very nice.
Thanks for the info!

Well, knock me over with a feather!

As I think I mentioned before, I had lost touch with the doctor who had been prescribing LDN for 2.5 years. He literally seemed to have dropped off the face of the earth. I dreaded trying to hook up with another phone-consult type doctor, and since I had my annual appointment with my regular MS doctor, I decided to ask him again to prescribe it for me. He had refused to do so in the past, but I figured I’d give him another go. And guess what? He wrote me a script for 4.0mg of LDN! I can’t believe it!

So I guess his attitude has changed a bit. He did mention that there was no evidence that it would help me. I simply restated the fact that it has helped me very much in the past. As he wrote the Rx, he mumbled something about it probably not doing me any harm either. So I guess attitudes have changed over the years. Yaaaaay!

In other good news, I talked him into skipping the MRI this year. Another Yaaaaaay!

:yahoo::yahoo::yahoo:

They are super nice! Hope it works out, and happy to help.

JD

Marion that's terrific! I'm glad you asked your Neuro. I get mine from my PCP but I think my Neuro was ready to write a script for me the last time I saw her. She is not big on MRI's. Only if you go on a DMD, or change to another DMD does she monitor with MRI's. :)

It will be much cheaper for you now, to get the script from your Neuro. :hug:


@Debw, I hope you get on LDN if that is what you want to do. Now you have a Pharmacy too thanks to roadaction13. Good luck to you.

I emailed my new prescription to Skip’s Pharmacy. I am told that it was shipped on Saturday (thank goodness!). Today I got an automated voice mail phone call from Skip’s informing me that the order has been shipped, along with certain contact numbers if I had any questions. It seems that they have provided for the fact that I am always insecure about if/when important email got delivered.

Aren’t they a bunch of smart cookies!?!? I love doing business with small, personal companies that have that extra touch.

I love, love, love Skip's Pharmacy! They are always super nice and helpful. And they even include a little bag of candy at Halloween time! :D I can call with a question and speak directly to Skip. It's great!

Once in awhile (I try not to), I take Hydro/Acetam (generic Vicodin - More for sleep when I'm afraid discomfort might interfere. (love my sleep). Would it and LDN clash? Want to try LDN, could easily stop Hydro/Acetam, (take maybe 1 every week or 2)

Codiene is a nark so I would say no, but every once in awhile shouldn't hurt anything...or you could just skip the LDN on the night you take H/A.

I have never read much about LDN, because demerol is my only pain killer, because I have Porphyria. I also have Polycythemia Vera, a myeloproliferative cancer, in which the bone marrow produces too many red cells and platelets. This is a slow growing cancer, usually allowing decades of life, but I have now flunked taking Interferon for it. My worst symptoms is foot neuropathy, but I think it is improving since I got off Interferon. I wish
I knew where to look to see if LDN could improve Polycythemia Vera. Maybe I will google.
I also have an old old MS diagnosis, and I think I actually have that too, but I have lived
a long time, probably because of my good diet--Swank.

I hesitate to even post as I know it's likely no one has a clue on this.. But I'm glad LDN
is available. Mariel

Your right Muriel. I don't think anyone has a clue about LDN and all your health problems. You won't be able to take Demoral with LDN.

You might call Skip's Pharmacy and ask him. I think the telephone number is on this thread back a few pages. I don't have it handy. :hug:

I have been back on LDN for a few weeks now, and I am loving every minute. The first thing I noticed is that I can close my eyes to rinse my hair in the shower, and I don’t have to hang onto anything so that I don’t fall down. My mental attitude is also much improved, which is probably because I feel so much better. I am noticeably stronger. What a blessing LDN is!

Whoopee, Marion..:D :hug:

Just wondering if anyone on LDN also has Hashimitos. Been on my clonazepam for over a month now, was going to call and get my LDN on order. In reading the literature, it has a warning for people with Hashimitos, that it could improve it, so my levothoroxine dosage and thyroid may have to be watched closely. Have been on thryoid med, since my surgery. Pathology said was Hashimitos going on.
Just thinking to mention it when I call for LDN for prescription. It said I could get hyperthyroidism rather quickly. :eek:

I take levothyroxine and just had my blood test so I could get my prescription renewed. It was fine......my PCP knows I'm taking LDN. I take a 100 mcg. each day and that has stayed the same for years now.

I'm on Thyroid meds. and LDN. Low Thyroid function with nodules and pain. The LDN has made the pain stop, TG.

I had to increase my dose, not lower it. I don't think it effects my Hypothyroidism. Yes, Hashimitos. It sounds more like a Japanese Motorbike. :D

I take 50 mcg M-F and 75 mcg on Sat and Sun. I think my Endo doc will increase it again. I just had my annual Ultra-sound and blood work.

Latest LDN News
 

Julia Schopick, a writer and public relations consultant, who posts the Honest Medicine blog, has published a new book, Honest Medicine: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases, now available online. The book describes in detail four safe, lifesaving treatments, including LDN, of which the public has little awareness because each has low profitability potential for big pharma.


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

Jolly good show, I say!

Thanks Kell:hug:

LDN check in time.

How is everyone doing with their LDN? Are you still getting benefit from it? Have you changed your dosage? Anything different happening since on LDN?

Give us a few words if you take LDN.

This thread in awful quiet lately.

I am back on LDN, which I stopped to have my CCSVI procedure. It took time to get back on it again, I kept trying but I had to go back to my sucrose (sugar) filler. The normal filler bothered my tummy.

I'm doing well, TG. I needed to know if the new improvements were from the CCSVI procedure, or the new improvements were from the LDN anyway. I have had improvement from both and wanted to keep up with the same program.

That's my update. How about you? :hug:

No DMD's for me, just LDN. :):):)

Hi Lady..:) Happy to hear that you were able to get back on LDN and that you are doing well.

I am the same. Nothing new to report. LDN is still my best friend. I may have to add CCSIV, So that I feel as well as you..:D

Still waiting, in vain, for a cure..:rolleyes: In the meantime, LDN keeps me pretty stable for a mature woman..;)

Nothing too much has changed for me. I've had a couple of flair ups so far this year.....but they both are sx I've had before......so does that count as an exacerbation? :confused: Why can't I remember this stuff? :o

I'm still on the 3.0 mg of LDN. I think next time I speak to Dr. S I'm going to ask for the 4.5 mg. I'm assuming it's the LDN keeping me stable for the most part. I'm too scared to stop taking it to see what will happen! :p I'm not rockin' the boat. :cool:

I’m doing much better after getting back on the LDN. After that one bad heat exposure, I’ve taken to watching summer from the air-conditioned comfort of home. We’ve taken a few day trips up to the mountains in Vermont where I mostly stay in the air-conditioned van. That’s OK with me. I think I am observant enough to enjoy the beauty that is mere feet from the van. Also, I’ve always been a bit on the lazy side, so it works out nicely.

I’ve decided to take that cognitive neuro evaluation set of tests. I considered doing it before, but the co-payment was a bit steep. Now that I have better insurance I think I’ll go for it. I think the tests are several days in duration. I’ll keep you all posted.