Input About Low Dose Naltrexone? | MyFibroTeam

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Input About Low Dose Naltrexone?
A MyFibroTeam Member asked a question 💭

I'm almost off the gabapentin and although I hadn't thought about what is next, the new doctor offered LDN. I said I would think about it.
So anyone with success?? Any opinions?? 🧐 I know we are all different but I'd like to hear your experience.

posted March 18
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A MyFibroTeam Member

I had to ween off the gabapentine . I was like trying to ween off opioids which I have done many times because I take them for flares. It helped but I have a spinal cord stimulator now so don’t need them. Good luck everyone with your own personal fibromyalgia adventures:). ❤️

posted March 21
A MyFibroTeam Member

Hi all, I would seriously recommend LDN or ULDN. Like was suggested previously, you can ask your GP for naltrexone, then titrate the 50mg capsule down as you want. I found like Dr Genevra Liptan has suggested, that taking lower doses - like 1.5mg or 0.5 mg (commonly referred to as ULDN - ultra low dose naltrexone) does usually work. If you are titrating your dose, keep it sealed in a bottle in the refrig. and only keep it for several days - it doesn't last forever.
The other night I couldn't sleep for whatever reason, and had pain in my neck and shoulders and couldn't get in a comfortable position to sleep. Well, I got fed up with tossing and turning, so about 1ish I took two drops of .5mg (so that equates to 1mg) and settled down to test it out. Woke about 9.30ish in an urgent rush for the toilet. Felt great after that - bladder was good, too!
You can take control yourself of the strength you need for that particular period in your life. It doesn't work miracles - nor does it fix all your fibro problems immediately, but it seems to work slowly and surely, and you will most likely find that in a few years time most of your major problems will have lessened. And isn't that what you want?
Google LDN Research online and educate yourself about it. Hope this helps.

posted April 8
A MyFibroTeam Member

Hi Jaycee, I used LDN and ULDN for many years and it virtually saved my life. I was in so much pain and none of the usual prescribed drugs did much except give me more side effects. LDN stands for Low Dose Naltrexone and ULDN stands for Ultra-Low Dose Naltrexone.
I started off with 4.5 mg LDN per day at night as it does help you sleep. (The first day I received it from an overseas compounding Chemist (can't find them on the web now though), I was so pleased to see it that I immediately took 1 tablet and was nearly asleep before I walked to the bedroom.) I took it at that strength for some years until I read on Dr Genevra's website that some people have a better result with a smaller dose, so I titrated it down to 2.5mg and 1.5mg doses. I found the best result for me was on the 1.5mg dose. I took it at that dose for about 10 years or more, and eventually stopped taking it altogether as it was quite difficult getting a GP to write a script for it to be compounded. Quite a lot of compounding chemists around, but not as many Drs willing to write out the script. If your Dr is willing to write out a script you are very fortunate. Search on the web for a compounding chemist near you, or one who is willing to post it to you.
All the best with this.

posted March 18
A MyFibroTeam Member

$100/month in NE. I believe it was for a month...

posted 5 days ago
A MyFibroTeam Member

Tried it in all of its forms. Regular dosage and micro dosage over the years. None of it seemed to move the pain needle, so to speak, so went off it. The low/micro dosage was as recently as last Summer and Fall. And as you've found out, they don't manufacture it in the low/micro dosage so it needs to be specially formulated. Which my insurance doesn't cover. I quickly decided that they cost/benefit didn't justify it.

posted April 21

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