... couple years?
Fibromyalgia - Low Dose Naltrexone-Does anyone have any experience with taking this? ? A
Question posted by 505eva on 19 June 2012
Last updated on 31 October 2014
This question has also been asked and answered here: What is low dose naltrexone (LDN)?
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5 Answers
ksinger
2 June 2013
Yes, I have been taking 4.5mg LDN for over 2 years now. It was, and likely still is, the reason I'm usually functional. I found a rheum who was willing to let me try it. I have it compounded at a compounding Walgreens near my home. It IS a bit of a hassle, and because of insurance insanity, I don't try to get it covered, but just pay for it out of pocket. The doc writes a 3-month script and they fill it for slightly under $30 a month. Not bad for out-of-pocket.
I have no side effects that I can discern. My only concern is that it doesn't seem to work as well as it once did, and I'm having more flares. But still, I am loathe to try something else, because I had such crappy luck with Cymbalta, not to mention the insane expense.
Oh, I started with the full 4.5mg dose used in both the 2009 and the 2012 studies, there does not seem to be any reason to "build up", heaven knows the dose is pretty miniscule to begin with. Because of the way the researchers think this drug is working - ie, NOT as an opioid receptor blocker, but rather as a drug moderating the impulses from the descending inhibitory system - increasing the dose will likely make the drug begin acting as it does when it is used as a drug-addiction treatment. This needs to be understood. The effective part seems to be the fact that this drug's action is VERY dose dependent. More is likely not better in this case, and even finding a doc who would understand this would be harder. Most of them (as some have noted) think the only use of this med is for drug abuse. You'd think docs would be smarter than their patients about dosages acting differently and about off-label uses, but that's another topic.
I would strongly encourage anyone with fibro, to attempt this med. It seems to be very well tolerated with few side effects, is cheap by fibro med standards, and won't get you hooked or require long tapering off if you decide to stop it. It made the difference for me. For more reading about the various studies of LDN and fibro, google "low dose natrexone 2009 2012 studies". Or go to youtube and search for Dr. Sean Mackey fibromyalgia" for a 1 hour presentation on fibromyalgia, and where he mentions the 2009 study.
Good luck to all and I hope this helps!
Mrs. RN
25 June 2012
I started at the top dose of 4.5mg due to the fact the stated side-effects were already symptoms I was dealing with.
I had asked my Dr. for a 3/mo supply with 1 refill, as a 6 mo. period is recommended to appreciate results.
I noticed after one week that I do not crawl out of bed in the morning feeling like I was beat with a bat all night. I am keeping track of new things like: increased stamina. I have been walking distances and just yesterday did some actual jogging in between walking.
I am using L-glutamine after exercise and it does reduce any pain from exertion. I have been more active in recent weeks than in past 16 yrs and not having to spend two days or more to recover.
I have an improved attitude towards others and have gotten that feedback.
This loss of job, activity and socialization inflicted by our limitations causes many of us to be other than ourselves. I was an intense, bitter, pain in the butt.
Now my children and husband have the old me back.
505eva
25 June 2012
I'm hoping that this works for me. I'll go up to 3.0 next week. I have noticed a bit more energy... not much, though. Also, I'm still taking 9 ibuprofen a day for the pain as well as using my TENS unit. I'd really like to lay off the ibuprofen b/c my guts don't like it.
Thanks for the info... btw, are you paying a lot for the meds? I paid $47 for a four week supply. That included shipping. That's what it cost with insurance coverage. I'll be on Medicare in August, so I don't know what my supplemental plan's drug coverage will pay???
505eva
22 July 2012
Hi Mrs. RN, I'm wondering how you are doing with the LDN. I have been on the 4.5 mg dose for one week now. I don't know if it's working or not. I do seem to have more energy. My main problem is this literal pain in the butt (right side). None of the medical drs. I've seen can help me. I saw an osteopath a few weeks back. He said maybe it's piriformis syndrome. He gave me stretches to do, but it hurt way too much so I had to stop. This particular pain has been non-stop for almost 2 years now. Do you think LDN will help with this--sciatica/piriformis/pinched nerve or whatever? My primary dr. who prescribed it thought it would help. What's your take on this? I tried to send you a message, but it wouldn't work, so I'm trying this way.
Thanks.
Eva
Mrs. RN
23 July 2012
Eva,
sorry for the long wait for a response. Had a 'freak' accident tripping over a new but crooked sidewalk walking with my husband in a crowd.
anyway, post surgery to pin femur neck. Scary and no one to complain to except maybe city government.
Re your situation and others: LDN will not likely decrease our fatigue = my attitude has always been: push through the fatigue.
I think I have been fortunate to have the use of LDN ( now ended because pain meds are needed to alleviate bone pain and therapy pain).
Please don't let the common non-fibro symptoms confuse your potential benefit from LDN program.
We all deal with problems that are non-related to Fibro.
this reply does not let me see your (or remember) your total question.
Help me by sending again anything I haven't answered satisfactorily.
thank you
italianprincess71
4 Sep 2012
How exactly does this work for fibomyalaga? It sounds like its for drug addicts and im very confused!! can you help?
Mrs. RN
22 June 2012
Yes, I am in early usage stage.
Having noticable improvement
Anyone needing a Dr. to work with you: find and contact best Compound Pharmacy close to you.
Pharmacist should answer all questions re i.e. fillers used ( screen for additives not tolerated by asking for choices).
Any questions, I will get your notifications.
Inactive
22 June 2012
Hi Mrs. RN,
Do you know if it helps neuropathy? Is it true that one never needs to up the dosage? Is it sublingual?
Thank you!!
Ondi
Mrs. RN
22 June 2012
yes, for some it has been reported - studies not complete, therefore not published, try to find documentation online: LDN + neuropathy
Inactive
23 June 2012
Got it.
Thank you Mrs. RN!!
505eva
24 June 2012
Mrs. RN,
What dosage are you taking? I've taken LDN (1.5mg) for 1 week now. Next week I'll up it to 3.0 mg. Then? There's no refill so I'll have to contact the pharmacy.
Mrs. RN
25 June 2012
I want to add that the low dose form is in a capsule and is swallowed at night between 9pm and 3 am as advised per pharmacist.
I am off all pain meds for over 9 mos. now.
I do use 2 mg of clonzepam for sleep and occasional anxiety. I am working to get my confidence back.
Years of MDs labeling me as a fraud put me a therapist office on a regular basis for many years and the added cost of precious funds.
A good pharmacist is the best path I've found for help with a fibromyalgia diagnosis. Dr.s are constrained by the AMA and insurance guidelines.
I use a D.O. ( Dr of Osteopathy) because they work with other than traditional medical ideology.
Hope this helps.
Inactive
21 June 2012
Wow, sounds like it would be worth a try, but this information has been available for 3 years. Old news as far as research goes. Wonder if Stanford has followed up on this? I guess I could go to the Stanford site and look, if I can find it. Medline is another possibility.
I'll let you know what I find as to continuing research.
Sweet Hippie
Inactive
22 June 2012
Thanks Laura!
Mrs. RN
22 June 2012
Notice the funding is mostly private.
Now in Study II at Standford, big pharma can't make $$$ on this drug, so we have outside help.
Maybe that's a good thing.
Inactive
22 June 2012
Thanks MrsRN,
Is like an "orphan drug"? If fibromyalgia is an orphan drug disease, I'll eat my flip flops.
Just sayin',
Laura
Inactive
22 June 2012
I'm just dyin' to know, what is an "orphan disease"? Can one of you medical women put this in layman/laywoman's words?
Thank you!!
Mrs. RN
22 June 2012
Not a true Orphan drug - it is widely used for many diseases and now is generic! That means too cheap for Pharma to promote.
They want to sell the newly patented chemicals.
This drug is proven to work for many types of diseases and Standford is moving forward on those and new diseases.
The 'compound pharmacy' I use does a lot of business for Low dose Naltrexene.
It's not mainstream, as the big AMA does not have it's own 'protocol for MD's to follow and therefore make insurance companies pay for the visits or med.
What did I miss?
Ask more questions...
I'm here.
Inactive
24 June 2012
Hi all,
How does one find a "compounding pharmacy"? Google it, or call every pharmacy in your area?
I'm determined to drag my laptop into my doc's office and have him read the articles I found about low dose naltrexone. But finding a compounding pharm will be a horse of a different color, IF he prescribes it!
Thank you!
Mrs. RN
25 June 2012
I did google for a compound pharmacy with my zip code: and found one that took the time to answer my numerous questions; needed to know about the optional fillers, how they processed it and she offered that if my old doc dies or quits- she'll help me find another on-board with this idea.
They shipped (non-taxed shipping for $6 to save gas and time) + charged $80 for 3/mo supply.
The MDs visits are under my med review for clonazepam and some mds are not adverse to fudging appt reasons for insurance payments.
I feel sometimes you need a partner like this who understands the medical process of meds and FDA is making some die sooner and suffer longer do to red tape stuff.
I am not feeling comfortable speaking out about these issues, but there you have it.
I needed to try this.
BTW The LDN anecdotal and Standford info reiterates that the fatigue doesn't seem alleviated.
I accept this. I am 61 and with an attitude change, I feel better and have hope.
Hope is a big deal here for us.
I do not have full medicare, so I can't help and don't believe any Ins. Co. will cover a visit and definitely not the med under this subject.
Mix the visit with another issue and visit might covered. My DO just writes what will get covered.
Is this wrong? Hope not.
Inactive
20 June 2012
Hi Eva,
I don't have experience, yet am interested myself. I asked my doctor if he would prescribe it, but he said "No! That is more for people that are addicted, which is not you"... much to my disappointment he doesn't know about Naltrexone. I'll have to drag my laptop in with me on my next appointment to show him an article about it. My doc isn't that old, you would think he would know about this. But he is still thinking old-school about it.
I hope you find a doc that will prescribe it for you, good luck,
Ondi
505eva
20 June 2012
Hi Ondi,
I don't know what happened to my entire question... but anyway it was my dr. who brought up the subject of LDN b/c she felt that she hadn't been able to help me and it was frustrating her. (She's the best dr. I've had). I knew about LDN from reading about it a couple years ago. Anyway, I started to take 1.5 mg a couple days ago. After 2 wks. you increase it to 3.0 mg for 2 weeks and then?? I've read that some people take 4.5 mg, but no higher. The dose for withdrawing from heroin is 50mg. so this is really LOW DOSE. I'm hoping that it does the trick. Your dr. probably doesn't know about the low dose thing. After I read about it a couple yrs. ago, I asked 3 drs. about prescribing it, and they didn't help. They, too, only knew about the drug addiction thing. There's some research to back it up that was done at Stanford. I hope you can try it. I'll let you know how it works...
Inactive
20 June 2012
Wow, I will have to look up that article. I have never heard of it being used for fibro pain either... Mary
505eva
20 June 2012
Mary,
Check it out... it just might help us.
Eva
Inactive
20 June 2012
Mary and Eva, there is an article right here, on drugs.com about low dose nal... look it up. I believe I just put the med name in the A to Z search engine and it showed up.
This could be ground breaking!! Eva, I truly hope it helps you, and do keep us posted.
Ondi
Inactive
22 June 2012
Welcome to the site Ondine. You remind me of a previous member, her name was SweetLemon alias Lara or the wild Irish nutter. you could be her twin. They say thier is a double for everyone in the world!!!
Inactive
22 June 2012
"they" do say that!
Inactive
22 June 2012
Coffee and cakes, no tofu please :-0)
Inactive
22 June 2012
pledge, have you ever tried 'Tofutti' ice cream?
O or ?
Inactive
22 June 2012
Oh, give me a break!
erl t byrd
31 Oct 2014
be sure to tell your doc it is low dose naltrexone 1 mg - 4.5 mg for off label use.
Save your doc' s time by printing off info from respected sites. Ask around and find folks in your area who have a knowledgeable doc. There are some of these docs doing extra practice at community clinics. LDN is of no risk to the community; has no narcotic value; no history of health threatening contraindications. As i say do the leg work for your doc; also there are brochures out there now extolling the benefits of LDN.
Your LDN script will have to be filled by a compounding pharmacist unless you live in a district where you can by one 50 mg cap at the pharmacy and mix it down with magnesium powder to the prescribed Low Dose ; eg: aspartate, and load empty caps. It's pretty simple. There is reported evidence that a calcium powder filler blocks the effectiveness of the naltrexone.nCap loading procedure is demonstrated at on line sites.
Related topics
Further information
- Naltrexone uses and safety info
- Naltrexone prescribing info & package insert (for Health Professionals)
- Side effects of Naltrexone (detailed)
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