naltrexone for fibromylagia

This forum made possible through the generous support of SDN members, donors, and sponsors. Thank you.

oreosandsake

Full Member
15+ Year Member
Joined
Apr 6, 2007
Messages
2,064
Reaction score
1,015
anyone actually trying this in practice? thoughts?

please share your experiences. :)

Members don't see this ad.
 
5 yrs now or so. 5mg compounded. Trial if fails lyrica, cymbalta, savella, and/or tramadol. As long as they stick with first line therapy of exercise.
 
Also, agree that LDN may have a role with FM. I tend to use 4.5mg as described in the literature. Compounding is relatively inexpensive (around $25/month).

The primary observational benefits that I've noted in patient's on LDN are an increase in quality of life and ADL's. However, numeric VAS seems to decrease only by 1-2.
 
Members don't see this ad :)
5 yrs now or so. 5mg compounded. Trial if fails lyrica, cymbalta, savella, and/or tramadol. As long as they stick with first line therapy of exercise.

Why tramadol? Technically it's an opiate (albeit weak). Usually you preach against opiates for FM. The serotonin and norepinephrine re-uptake effects?
 
Why tramadol? Technically it's an opiate (albeit weak). Usually you preach against opiates for FM. The serotonin and norepinephrine re-uptake effects?

Technically it is such a weak opiate, it should be considered non-narcotic. And it is supported in the literature as well as all guidelines for FMS.

Mu binding affinity for tramadol is between 1:25 to 1:8000. M1 metabolite is at best 1/5 as potent as morphine, but side effect profile is inconsistent with opiate binding effects. The drug lacks the abuse potential of true opiates.

www.canadianpainsociety.ca/Tramadol/Tramadol_Qs_As.doc

http://ewsd.wiv-isp.be/Publications...Gillen2000_tramadol-human-opioid-receptor.pdf

http://www.medscape.com/viewarticle/536239_2
 
I also use Naltrexone 5 mg in patients who have failed other medication management, which includes Nortriptyline, Venlafaxine, Gabapentin, Lyrica, Cymbalta, and sometimes Savella. I am not entirely convinced whether it works or not.
 
So has anyone seen side effects from this? Recently started a pt on this and she's calling back with leg swelling and I forget what else. What are the expected possible side effects? Anyone
 
So has anyone seen side effects from this? Recently started a pt on this and she's calling back with leg swelling and I forget what else. What are the expected possible side effects? Anyone

Does the patient have more drug "allergies" than decades of life?
 
  • Like
Reactions: 1 user
Yes she does and she has some unexplainable fibromyalgic/central sensitization syndrome... that's probably my answer
 
  • Like
Reactions: 1 users
I am a fellow and have an inherited patient on high dose opiates for FM. Would you wean off fully and start Naltrexone or start and then wean off?
 
Members don't see this ad :)
I am a fellow and have an inherited patient on high dose opiates for FM. Would you wean off fully and start Naltrexone or start and then wean off?
Forgive this ignorant family doctor, but wouldn't starting naltrexone before weaning the opiates lead to a fairly speedy withdrawal?
 
Opiates not indicated for FMS. Good to taper rapidly. Start 5mg Naltrexone and add Zofran and Zanaflex 4mg tid x 21 days.
Taper 10% per day until off opiates.
 
when you say you are getting naltrexone compounded at 5mg. Is this as a cream? Or as a pill. Furthermore, how often are you giving it?

Great.

I've never tried it for FMS. Would be interested in trying it for patients..
 
just FYI, the dose of 4.5 mg is soo low, I think it won't hurt if 6 or 7 mg is taken

so if compounding is not an option than have them break the 50mg into 1/8th's; don't tell pharmacy, they get their panties in a bunch; then you have fragments of more or less 5-7 mg each; I just tell them to take a big fragment one night, and a smaller fragment the next night

again, compounding is available its better, but if not, this is a viable work around (I think- please correct me if I'm wrong)

I did this at the VA for a year and had no issues, and a few successes
 
just FYI, the dose of 4.5 mg is soo low, I think it won't hurt if 6 or 7 mg is taken

so if compounding is not an option than have them break the 50mg into 1/8th's; don't tell pharmacy, they get their panties in a bunch; then you have fragments of more or less 5-7 mg each; I just tell them to take a big fragment one night, and a smaller fragment the next night

again, compounding is available its better, but if not, this is a viable work around (I think- please correct me if I'm wrong)

I did this at the VA for a year and had no issues, and a few successes


I often wind up going to 10mg (1/3 to 1/2 of the patients).

Naltrex comes in 50mg tablets and I ask the local pharmacy to crush, weigh, and make 5mg tablets. QD.
Side effects include vivid dreams, but IME not nightmares.
 
Anyone try oxytocin injections? I had a FMS lady who told me recently they worked very well for her in the past, and was wondering if I would consider prescribing for her. I haven't been able to find much literature yet.
 
nevermind...on my previous post. That is naloxone. Does that work if they do it nasally? The study was done with naltrexone.
 
steve, one theory for the vivid dreams is that they are having more REM sleep, and that may be a mechanism for why it helps FM folks; they have poor sleep architecture

it seems to be more prominent at first and then fade over time

another predictor of success; high normal ESR, like around 15-19 ish
 
Does anyone know how and why they came up with the 4.5 mg dose in these studies for naltrexone?

For alcohol and opiate abstinence the dose is 50mg per day and liver toxicity doesn't occur until 300mg per day. Why did they pick such a low dose for the studies, and why couldn't you just have patient quarter a pill and take 12.5 mg or even the full 50 mg daily if we know that's a safe dose, for patients without liver disease. I'd like to try this for some of my fibro patients, but I'd like to skip the compounding step if able. It's off label either way, so I what's the need for compounding to get the exact 4.5 mg dose?
 
Last edited:
I've been on a prescribing binge with low dose naltrexone for fibro lately and have had some surprisingly positive results. So far three success stories in patients who were all skeptical it would work.

One had bilateral PSIS area pain for which I did pretty much every intervention trying to alleviate. Finally one day a few weeks ago I examined her again more generally and noticed she was actually tender at multiple spots, not just the PSIS. A week into naltrexone and she reported significant improvement in her buttock pain for the first time ever.

The second patient had radic that responded to an epidural, but widespread tenderness, pressure like headaches, and a sense of constantly feeling overheated, along with burning sensations when anyone pressed on her skin. ALL of these symptoms abated substantially a week after starting naltrexone.

The third patient was seen by one of my NPs, so I didn't get the full picture, but the NP was ecstatic to inform me of the results. The patient was apparently thrilled.

All I can say is, wow!
 
Steve or others, do you guys the know cost of getting this compounded or how much the full dose is?

This ends up being the rate limiting step in most of my prescriptions

Thanks
 
I've been on a prescribing binge with low dose naltrexone for fibro lately and have had some surprisingly positive results. So far three success stories in patients who were all skeptical it would work.

One had bilateral PSIS area pain for which I did pretty much every intervention trying to alleviate. Finally one day a few weeks ago I examined her again more generally and noticed she was actually tender at multiple spots, not just the PSIS. A week into naltrexone and she reported significant improvement in her buttock pain for the first time ever.

The second patient had radic that responded to an epidural, but widespread tenderness, pressure like headaches, and a sense of constantly feeling overheated, along with burning sensations when anyone pressed on her skin. ALL of these symptoms abated substantially a week after starting naltrexone.

The third patient was seen by one of my NPs, so I didn't get the full picture, but the NP was ecstatic to inform me of the results. The patient was apparently thrilled.

All I can say is, wow!

What dose? ( Read my post, #24, 5 posts above)
 
What dose? ( Read my post, #24, 5 posts above)
4.5 mg

What I do is prescribe a two week trial of compounded 4.5 mg pills that cost $2 each. If that works, I then rx the 50 mg pills with instructions to cut them into eighths (6.25 mg), and take that. I don't have any feedback yet on insurance coverage for this. One pharmacy had a retail price of $99 for 30.
 
Does someone have the studies handy or a reference? Also I'm still wondering if anyone has ever tried oxytocin?


edit: found these

Younger J, Noor N, McCue R, Mackey S.
Arthritis Rheum. 2013 Feb;65(2):529-38

and

Younger J, Mackey S.
Pain Med. 2009 May-Jun;10(4):663-72. doi: 10.1111/j.1526-4637.2009.00613.x. Epub 2009 Apr 22.

any others I'm missing?
 
Last edited:
Does anyone know how and why they came up with the 4.5 mg dose in these studies for naltrexone?

For alcohol and opiate abstinence the dose is 50mg per day and liver toxicity doesn't occur until 300mg per day. Why did they pick such a low dose for the studies, and why couldn't you just have patient quarter a pill and take 12.5 mg or even the full 50 mg daily if we know that's a safe dose, for patients without liver disease. I'd like to try this for some of my fibro patients, but I'd like to skip the compounding step if able. It's off label either way, so I what's the need for compounding to get the exact 4.5 mg dose?

This is a fantastic question. I hope somebody can enlighten us on this.
 
So has anyone seen side effects from this? Recently started a pt on this and she's calling back with leg swelling and I forget what else. What are the expected possible side effects? Anyone

I have tried it on many, but only worked on a few. They complain of nausea, mood changes, rashes..... but in all fairness they have failed everything else that is legitimate treatment and really are hoping I will switch their Norco from the PCP to something much stronger. They are a bit peeved when I taper them off and try this.
 
  • Like
Reactions: 1 user
Top