Hi everyone,
My specialist wants me to try a low dose of Naltrexone to see if it helps with pain. Has anyone tried this medication and if so, has it helped or was it useless? Thanks!
Hi Linda! I have been using it since Sept. 9th and it has helped me tremendously! I can’t take any of the fibro meds and of course doctors are reluctant to prescribe pain pills. My main complaint with fibro is the melancholy mood that seems to hang over us. I would cry everyday over nothing. I have no initiative to do anything and hated just sitting here so down.
My pain doctor hasn’t been very cooperative so I asked my daughter to go with me. I took her because I wanted her to hear and see how I have been treated. I knew she would tell me that she can’t do anything and I should go to Mayo Clinic. Sure enough - she did and was really rude about it. It was then I asked the doctor to check out the info online about LDN and how patients are seeing good results with use. She was reluctant but after spending about 15 minutes on the Internet she agreed to let me try it - going out in a limb she said!
She prescribed a 50 mg tablet so my insurance would cover it. Cost me $10. I knew that I could split it and dissolve it in distilled water mg to ml and refrigerate. If I was prescribed a compounded prescription I would have had to drive too far and it would cost a lot more. The 30 day supply should last me close to a year!
I noticed right off the bat how it affected my mood! I woke up with less brain fog and really enjoyed my morning coffee. My head was the clearest it had been in ages and the burning sensation in my hands and feet were gone! I believe that it takes the edge off that all over pain, similar to taking a Vicodin or similar. My husband has really noticed the difference, as have my two adult kids.
I was hesitant at first to try it but it has little to no side affects! That was my reason to not take a prescription antidepressant. So many side affects! I started taking the recommended dose of 4.5 ml and have lowered it to 3.8 ml, as in the beginning it did cause me to wake up more during the night. Not good, as I need my sleep! I know others have started at 1.5 ml and then increase it each week. That may be a better way to adjust to it. I started dreaming again and it has been great. I still have went through a few flares - and during them I wasn’t so depressed like I’ve been in the past.
If you google LDN there is information on the trials done on the drug and how it has helped the progression of MS in some patients, as well. I believe the site is www.LDN.org and there are YouTube videos on how to change it from a tablet to liquid solution. I would definitely read as much as you can on it before trying it and then consult with your doctor again with unanswered questions. What I found and think its a plus is if you have to stop taking it for some reason - no withdrawal symptoms.
If it wasn’t for this site and members talking about it, I would never have known to even check it out. I’m so thankful!!!
Hi Linda,
My Rheumatologist recommended Naltrexone and I tried LDN for several months. I had hoped it would give me an all around sense of well being, as it's been shown to help cancer patients. But I didn't have a good response from it. I don't remember if it helped with pain or not, but I think I stopped because my headaches were worsening. I was really excited and hopeful about it, and know that there are many who benefit from it. There is a group on facebook called 'got endorphins', where you can get a lot of tips about it.
I would definitely give it a try, and I myself might give it a second chance sometime. Maybe I had too great of expectations that it would just cure me or something.
If you do try it, post the results you have because I don't think it's well known.
Nic
So sorry that you didn’t get positive results, Nikki. Like all meds, they don’t always work for everyone. Hopefully, someone will find a med or herb or something to help us all!
There was a person on this site who used it and claimed that it took away all of her fibro pain. Unfortunately she has left this site so you can't question her about it.
Thank you , I guess I will try it ...I have nothing to lose!
Hi Linda..Just curious how the low dose of Naltrexone worked for your pain..I'm finding more and more articles on it.
Thanks so much!
Susan
Hi Susan,
I am the guy who also lives on Cape, my apologies if I never got back to your very old question about Rheum docs here; my emails from here are infrequent, may be getting sent to spam.
Never really been in treatment for fibro. I was rediagnosed with a local Dr. C five years ago…batteries of tests that showed nothing LOL aNd confirmed fibro of previously dxed 25 years ago. We did not get along so I never went back, have never received meds for fibro until recently. My pain has been getting much worse over last fear years, just chance, really, this is not a progressive disorder, but it really impacts my life now. My wife was concerned ( not me) something worse than fibro was going on so I just saw a nationally known guy near BOS, nice guy, interview and a few blood tests for inflammation, all negative. He suggested Cymbalta, in class of anticholinergics like many meds that my PCP and I thought a bad idea due to some other medical conditions, why I’ve never tried it. so I tried 20 mg, got 25% relief overnite and bad effects on my other conditions, Kept on for five more days, had to stop, opened capsule and tried 10 mg, some help, still side effects that are near life threatening for me so end of story. I researched the hell out of LDN the last few months (BOS guru and PCP wouldn’t prescribe) and just got several forms, caps and tabs, from overseas. I started way below reco’d dosages and want to build up gradually to minimize side effects, if any, so took .5mg (3 ml eye dropper of LDN solution I made up) in glass of water before bed. No sleep effects ( insomnia anyway, on generic Ambien for a zillion years like everyone, crap med) and no effects of any kind I notice today. I have a chemistry minor but it is not rocket science to dissolve tabs or capsules, though I may get drops if it works. I’m pinning a lot on this working as I’m not going to take fibro meds and the pain is near intolerable at times.
Will try to report progress and answer questions.
Linda,
I was wondering if you did try naltrexone and what effects it had. I am considering trying it although I think I will have to give up some meds in order to do it (such as Tramadol). Thanks,
Mary
McWain said:
Linda,
I was wondering if you did try naltrexone and what effects it had. I am considering trying it although I think I will have to give up some meds in order to do it (such as Tramadol). Thanks,
Mary
I did some searches & it is for patients who are in drug rehab & the side effect is that you cannot consume alcohol & some addictave recreation drugs. If you do you become very ill. Hence, drug rehab.
Actually, it is only the 50 mg tab prescribed for opioid abuse that means you can’t use opiates. LDN is only taken .5 to 4.5 mg and has no interaction with alcohol. You can continue to use both LDN and opiate pain meds if you take them 12 hours apart. I worked up to 2.5 mg from .5 and then had a nasty reaction that worsened my fibro so I stopped. My symptoms quickly went back to their usual level. Response to LDN and dosage are very individualistic, though, and some people get tremendous relief. I may actually try it again at 4.5 mg. I would try it, the risks almost none and the potential gains are great.
Thanks for that additional info, Capefibro.. I was not looking forward to giving up Tramadol in order to test the LDN. You had a bad reaction at 2.5 mg but you would try it again at 4.5? You don't worry about greater side effects at higher dose?
I started at 4.5 ml and I noticed that it caused me to wake up more during sleep. I lowered it every two days to where it doesn’t, which is 3.8 ml at night. Best time to take it is around 9 pm based on studies. That’s the only side affect I found, but I also take 2 sleep meds or I never sleep. I finally was given oxycodone hcl for pain last month and pharmacy and drs. do say that the amount fibro or ms patients take (less than 50 ml) will not have any adverse effects. Meth or alcoholics usually take 150 mg or more a day and will get ill if they use when taking. It relieves the buzzing in my legs and hands, as well as improves mood. Before taking I had no ambition to do things. This drug got me smiling again without having to take an antidepressant with lots of side affects!
It’s a very odd med, IMO, aspects well known at 50 mg and above but poorly researched for fibro, a few small studies with no follow up, at the LDN dosages. There seem to be individual dosage windows for people such that slightly higher or lower doses have great impact. I truly experienced the worst fibro symptoms in 25 years on it but they went away. Maybe I need a higher dosage!? I haven’t been able to get myself to try again even though the effect only lasted a few days. Depending on the fibro, I may try again. I’d hate to think some simple med could help. I did have to take in the AM, maybe not optimal, as I experienced vivid and unpleasant dreams when taken at night, perhaps the only adverse effect I’ve seen reported. If I had an M.D. with experience in dosing it working with me I’d certainly try it, I had to order it overseas on my own. I have an appt. with yet a new rheumi in a month so see if he knows about it. Wait until I tell him I got certified for medical marijuana here (MA) but I am waitng for dispensaries to open and that’s undoubtedly a different thread!
Hi Linda My Rheumatologist put me on 4.5gr twice a day about a year ago before that I had tried many many types of meds and ended up high as a kite on 600mg of tramadol and that was just one of the med I had to take a day and that's no good as I could not function.
So about the Naltrexone I found that although they did not give me as much pain relief as other meds they did teach me to pace myself as my body would just stop and not let me battle on through the pain, as I used to on the opioids as they used to mask everything even my mind.
Unfortunately after a year on the Naltrexone the rheumatologist said I had to come off of them as there is a risk of sudden death because of the build up of toxins in the body(oh my god ) so on to yet another med this time trans patches, they were terrible made me sick and no good for the pain even when increased in strength.
So now after six months back on the Naltrexone after my body had a rest from them, am now waiting for Botox injections into my spine whatever next, mind you when you are in this much pain you will try any thing, my advise to you is, give it a go it may work for you and its got to be better than living in this hell.