LDN

[carries]

Hi! I just got a script for LDN. My dr never even heard of this type of treatment but I brought her in articles and she agreed to try. So what dosage should I start with? Is 3mg too much? Also, I do go out on the weekends with friends to dinner/drinks…is alcohol okay while on it or should I not take it on the weekends? Please share your experiences. Thanks!

[aynurrzepa]

Hi carries!

I am also just about to receive LDN and I am going to start with 4.5 mg and only reduce it if necessary (LDN website has good info on this). Ask the compounding pharmacy how much naltrexone they put in their preparations. They may as well do 4.5 mg as that is the latest recommended dosage for adults. The website also recommends refraining from any alcohol while on LDN as it will interfere with the healing effect of LDN. I intend taking no alcohol whatsoever…

Hope this helps and of course, see what the experienced LDN-ers have to share with you.

All the best,

Aynur

[lor]

Hi carries,

My doc started me at 1.5 mg for a month, 3.5 mg for a month and then up to 4.5 mg.  Some people have a herx reaction to it.  When the immune system kicks in more and kills bugs, more die off.  So my doc said go slow.  I didn't have any problems.  I only had a few vivid dreams and a couple of nights that I was up more. 

Over all I think it is helping me.  I will continue to take it.    

I hope it help you.

lor

 

[Kats]

Hi Carrie,

My doctor recommended the exact same protocol as Lor's.  I think I will always err on the side of low and slow when starting any treatment…just in case!  I am half way through the first month and I haven't noticed too much yet but I will definitely stick with it for a while. 

Katie

[carries]

Thanks for your input! I see my Rheumy today so I will ask him his thoughts…it was my AP dr that perscribed LDN but she doesnt know much about it!

She wrote a script for 3mg maybe I can get my Rheumy to do one for 1.5mg .

Any of you on prednisone during it…I know you cant be on doses higher than 10mg while taking LDN but just curious. I occasionally will pop a pred myabe 2-3mg on days I am flaring.

[lor]

Hi carries,

I am on pred.  Right now I am taking 5mg AM and 5mg PM.(flare :doh:)  Normally I was at 2.5 2xday.  I had no problems.  And I know it is working for me.  I have more energy.   I have been on it for about 7 months.  I felt really good till I started treatment for babs, with mepron. 

lor 

 

[Okie Tam]

I've been taking the LDN for several months now. Wish I could say it has done wonders but nothing real noticeable.  I will note that at about the same time I started on LDN that I was also bitten by my second tick and experienced sever swelling and joint inflammation in my left wrist and middle finger. I also was ingesting a lot of night shade vegetables. I've since been dx'd with Lyme. Right now, six months later, I am back to my normal self with RA. I might add I added DHEA too.

I do tend to imbibe my nightly glass of wine and an occasional mixed drink. Not sure that I will ask for an additional 6 month script for the LDN as I don't feel it added anything to my treatment.  It's probably worth a try but I'm going to cash out after I see the LLDM next month. Good luck.

[carries]

Thanks for sharing your experience. I think I am going to try it…like you for several mths. Just got back from my rheumy appt and he is on board..he said it cant hurt to try it…he has given to several other patients that asked and no results but agreed to try it. So I think I might order it from that Irmat Pharmacy in NY rather than my local pharmacy. I want the top notch stuff if I am going to try it. Probably pay a lot more but oh well.

LEts keep our fingers crossed and good luck to you!!! Thanks again!

[Eva Holloway]

carries,

I have been on LDN since last year beginning of September and I am able to tell the difference. It did take a long time to really show but even after I had to stop for two months this summer I am doing fine now. The printout I have says it will take up to 6 months before you really can tell the difference. I did start with 4.5 mg and had some insomnia and later vivid dreams but none now.
I do have a glass of wine on special occasion and have no side effects. I think it is if you would overdue it that it may bother you.
I know when I fell and broke my hip I still had LDN in my system and the shot for pain didn't help it actually enhanced the pain till about midnight, then when I got the next pain shot it finally started to help. So you know if you have some dental work or surgery coming up you need to stop LDN one or two days before.  Also if you get  medicine with codein etc you can not take the LDN and then you have to wait for about 5 days to get it out of your system.
Hope that helps.
Eva:D

Eva Holloway

[jtubman]

Hi Carries!!

My wife Kathryn has been taking LDN (for Dermatomyositis & Breast Cancer),since Feb2009,with awesome results. LDN supplements Minocin very well. Both her bloodwork and her strength & flexibility have showed constant improvement. She is walking quite normally now,and no more cancer.

LDN can really jump start a low functioning thyroid, so anyone that is already taking thyroid medication, should take a baseline test, and monitor thyroid function very closely. In kathryn's case (because she was already taking Eltroxin for low throid)had to start at 1.5 mg of LDN per night, and very slowly worked up to 4.5 mg per night;  but it took about 6 months, while slowly reducing her Eltroxin. She has struck a balance between the two meds.

Please ensure you chose the “quick release” form of LDN, and watch the type of filler your pharmacy choses. Avoid calcium canbonate as a filler,because it interferes with the quick release. Using an experienced pharmacy is wise.

Also, consider Alpha Lipoic Acid (ALA)as a supplement to LDN, (like Dr.BB at the University of New Mexico)recommends. ALA (unlike LDN) works best in a sustained release form.

I hope it helps you as much as my wife.

-Jim

 

[PhilC]

Alcohol shouldn't be a problem, and the same for prednisone. I've often read that one shouldn't take more than 10 mg of prednisone with LDN, but that is really just a recommendation made by some doctors, and is based on guesswork. It's not a hard rule. I've learned that many of the “facts” about LDN are not really facts at all, they are the opinions of certain doctors. The problem occurs when people treat those opinions as gospel.

I would start at 1.5 mg and increase by 0.5 mg a month. And if you find that you've gone too high, back down by 0.5 mg. That's what one doctor recommends (I forget his name). It's a nice, cautious approach, and it allows one to get pretty close to one's optimum dose.

[user=1508]carries[/user] wrote:

So I think I might order it from that Irmat Pharmacy in NY rather than my local pharmacy. I want the top notch stuff if I am going to try it. Probably pay a lot more but oh well.

I've heard that Skip's Pharmacy in Florida is also good, and reasonably-priced.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lor]

I get my LDN from Skips Pharmacy in FL.  I received it real quick and I live in MI.  I used to get it from a recomended place in IL.  But Sips was alot cheaper and I get my dogs LDN from here also.  Skips is recomended on the LDN site.

lor 

[carries]

Thanks again Phil and Lor for your input…I am waiting to hear if my insurance will cover it? Can you tell me how much it is from Skips ?

:):D:):D:P Thanks for your help!

[lor]

I think it was $35 from the compounder in IL and $25 from Skips, for 30 day supply (they shipped me 3 mo. worth).  I think the shipping was less also.  And it is cheaper for less mgs.  My dogs, 1.5 mg was less than mine (mine is 4.5 mg).  Can't remember exactly,  it was over a month ago.

lor

[Okie Tam]

I might add that my Rhumy wouldn't prescribe LDN for me. I don't think he was familiar with it.

I went to my GP a few weeks later for my yearly check-up and in the course of the discussion I mentioned LDN and she told me that not only did she take it herself but she regularly prescribed it for PMS. That is how I got my prescription. Insurance would not cover it but I shopped around the local pharmacys and it turns out the on-site one at the medical center filled it for $20 vs the local compounding pharmacy that wanted $60. That's 4 mg., and 30 days.

Just a suggestion if your female and your Rhumy won't prescribe it for you.

Kind regards,
Tammy

[Author]

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