... couple years?
20 Jun 2012
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,
21 Jun 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.
22 Jun 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.
25 Jun 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.
2 Jun 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!
- Naltrexone Information for Consumers
- Naltrexone Information for Healthcare Professionals (includes dosage details)
- Side Effects of Naltrexone (detailed)
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