... couple years?
Fibromyalgia - Low Dose Naltrexone-Does anyone have any experience with taking this? ? A
- Posted:
- 19 Jun 2012 by 505eva
- Topics:
- fibromyalgia, naltrexone
Details:
Responses (4)
Anonymous 20 Jun 2012
Hi Eva,
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,
Ondi
Anonymous 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.
Sweet Hippie
Anonymous 22 Jun 2012
Thanks Laura!
Mrs. RN
22 Jun 2012
Notice the funding is mostly private.
Now in Study II at Standford, big pharma can't make $$$ on this drug, so we have outside help.
Maybe that's a good thing.
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.
Anonymous 22 Jun 2012
Hi Mrs. RN,
Do you know if it helps neuropathy? Is it true that one never needs to up the dosage? Is it sublingual?
Thank you!!
Ondi
Mrs. RN
22 Jun 2012
yes, for some it has been reported - studies not complete, therefore not published, try to find documentation online: LDN + neuropathy
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.
505eva
25 Jun 2012
I'm hoping that this works for me. I'll go up to 3.0 next week. I have noticed a bit more energy... not much, though. Also, I'm still taking 9 ibuprofen a day for the pain as well as using my TENS unit. I'd really like to lay off the ibuprofen b/c my guts don't like it.
Thanks for the info... btw, are you paying a lot for the meds? I paid $47 for a four week supply. That included shipping. That's what it cost with insurance coverage. I'll be on Medicare in August, so I don't know what my supplemental plan's drug coverage will pay???
505eva
22 Jul 2012
Hi Mrs. RN, I'm wondering how you are doing with the LDN. I have been on the 4.5 mg dose for one week now. I don't know if it's working or not. I do seem to have more energy. My main problem is this literal pain in the butt (right side). None of the medical drs. I've seen can help me. I saw an osteopath a few weeks back. He said maybe it's piriformis syndrome. He gave me stretches to do, but it hurt way too much so I had to stop. This particular pain has been non-stop for almost 2 years now. Do you think LDN will help with this--sciatica/piriformis/pinched nerve or whatever? My primary dr. who prescribed it thought it would help. What's your take on this? I tried to send you a message, but it wouldn't work, so I'm trying this way.
Thanks.
Eva
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Hi Ondi,
I don't know what happened to my entire question... but anyway it was my dr. who brought up the subject of LDN b/c she felt that she hadn't been able to help me and it was frustrating her. (She's the best dr. I've had). I knew about LDN from reading about it a couple years ago. Anyway, I started to take 1.5 mg a couple days ago. After 2 wks. you increase it to 3.0 mg for 2 weeks and then?? I've read that some people take 4.5 mg, but no higher. The dose for withdrawing from heroin is 50mg. so this is really LOW DOSE. I'm hoping that it does the trick. Your dr. probably doesn't know about the low dose thing. After I read about it a couple yrs. ago, I asked 3 drs. about prescribing it, and they didn't help. They, too, only knew about the drug addiction thing. There's some research to back it up that was done at Stanford. I hope you can try it. I'll let you know how it works...
Wow, I will have to look up that article. I have never heard of it being used for fibro pain either... Mary
Mary,
Check it out... it just might help us.
Eva
Mary and Eva, there is an article right here, on drugs.com about low dose nal... look it up. I believe I just put the med name in the A to Z search engine and it showed up.
This could be ground breaking!! Eva, I truly hope it helps you, and do keep us posted.
Ondi
Welcome to the site Ondine. You remind me of a previous member, her name was SweetLemon alias Lara or the wild Irish nutter. you could be her twin. They say thier is a double for everyone in the world!!!
"they" do say that!
Coffee and cakes, no tofu please :-0)
pledge, have you ever tried 'Tofutti' ice cream?
O or ?
Oh, give me a break!