I have been following research regarding brain inflammation found in fibro patients. A research study showed effective pain relief with low doses of Naltrexone. Has anyone been treated with this? If so was it effective for you? Thanks for your interest.
Following with interest
@witsend, I would strongly suggest that you speak with your doctor about this. I saw research about low dose naltrexone some time ago. My rheumatologist gave me a very clear no!
Thank you for your concern. Of course I would discuss it, however this is relatively new research that was just announced in January 2019 in the New England Journal of Medicine. Not some off the wall organization. I believe Stanford did some of the testing for the Naltrexone. Many doctors will not use any meds that have not been FDA approved for fibro, I was fortunate to have a doctor for years that was willing to treat with off label meds. I had great relief for about 6 years with the combination of Lyrica and Savella. The Lyrica was before FDA approved it for treatment of fibro. I am hoping to find another that will help since no fibro meds offer me any relief at this point.
Clicking on the magnifying glass on the top right of this page, just to the left of your avatar, takes you to the site search engine, which works very well.
If you key “Naltrexone” into the search engine, I think you will find some interesting information.
I am currently on 4.5mg, and have been taking it for about 4 months at this dosage. I initially started higher but it was giving me some crazy side effects. At the 4.5mg I have no side effects and I take it at night with 10mg of melatonin. This combo is the only thing that will get me to sleep. It has also helped with my pain to a certain extent, but I still have flare ups and fatigue on a regular basis.
Hope this was helpful, let me know of you have any questions. Happy to help!
Witsend, i began 4.5mg naltrexone on advice from my rheumatologist on Friday April 5th. I am very happy with the result, as are my husband and my doctor. Nothing else Rx had helped and actually made me worse, so i had to stop all of them 2 years ago.
It is wonderful that clothes do not hurt anymore!!!
Yes i still have fatigue, brain fog, random lightning bolts, and all sorts of other unpredictable things.
But most nights i get a good sleep and most days i am pretty ok until about 3pm.
April 1st, i could only walk 5 minutes a couple of times a week. Now i am up to 20 minutes before breakfast every day.
I know it could all fall apart any day but i am so grateful for something to help. And i have had no trouble with side effects.
It is not covered by my insurance and $38.63/month.
Anything else you would like to know, just ask and i hope this helps you too! ra🐢
There is a great deal of research that (Low Does Naltrexone) LDN - read more, click here - benefits auto immune problems across the board. My Mum was given it for MS, my cousin has it for Crohn’s - and I have began to talk about it with my doctor.
However, I find that my Amitriptyline and a very strict no sugar (even as a low level ingredient) no simple carbs (potatoes, rice, paste etc), no gluten diet - simply put, fresh fruit and vegetables with occasional fish or meat works very well. Although, Amitriptyline - read more, click here - doesn’t agree with some people and the side effects can be horrendous once you get into the higher doses.
Hope that helps
Thank you, I had only seen the LDN research regarding fibro. Your family has benefited from it for the other problems, really great it helps them. I found that many people with fibro have good results so may be promising. Amitriptyline is no help at all, was on it 20 years ago and then tried it last year as well.
Thank you so much for your response, sounds promising, I found many others on this site have benefited as well. I am seeing a new doctor, 200 miles from home at Vanderbilt Medical Center so will be asking him about it. The local doctors would not prescribe anything new just the 40 or so meds I have already tried over 20 years. Someone mentioned LDN has to be compounded by a pharmacy. Have you found that to be the case? My insurance only shows the one 50mg dose.
Thank you so much for your response. It helps knowing it does help with the pain which is the worst part of it for me. I have most of the companion problems as well but would like one part to be resolved.
So the actual pills only come in 50mg the lowest. When I started I would cut them in 4 and take approximately 12.5mg, but that was too much. The org website low dose naltrexone, you can find it easily helped me find a cost effective compunding pharmacy that uses no bad fillers that can give side effects. They list compounding pharmacies in many cities so uou can check if there is one near you. They name those compounding pharmacies because they understand ldn and are consistent with their output.
I pay $85 for a 90 day supply at 4.5mg, which is great, in comparison to ridiculous quotes I received from other places, and no side effects, which was a win win for me.
Thank you for such a quick response, you mention a website that indicates the pharmacies that compound without fillers. Would you give me the actual name of the site?
Sorry, was not sure if I could type websites so I wrote it out, lol. The site is http://lowdosenaltrexone.org/. Let me know if you have any other questions.
Thank you so much, I thought I had understood what you wrote but I did a search on the low dose naltrexone & the hit had taken me to one page with no links for the pharmacies.
Hi, 2when I looked it up, it kind of described something like methodone,but I must have looked it up wrk g
Can anyone. Larify? I see my rheumatologist aMonday. Thank you
Sorry about misspellings kindle won’t let me edit
Hi again, I was just going to assess smh
For dietary as ice. Need to re camp mine thanks
Naltrexone, in other contexts and in bigger doses (as I understand it) is used to help treat opiate drug addiction. But I’m no pharmacist. Now there’s a person you could ask about it. Pharmacists are very underutilized in health care. They know SO much, and some of them really like to share their vast knowledge.
Research has been done showing fibro patients get very good results for pain when using low dose Naltrexone. It is used to treat opiate and alcohol addiction but at a dose of 50mg. Most of the fibro people only take 4.5mg, I have had many positive responses from people taking this med. Some have been taking it for over a year. So it is not new for fibro pain just not many doctors are really aware of current treatments available for fibro. I just left a doctor that would not prescribe any off label use of medicines. That is really letting down a fibro patient. I intend to ask about Natlrexone when I see a new doctor in a couple weeks. Good luck with your appointment.