Polly Posted January 9, 2011 Report Share Posted January 9, 2011 What s considered a low dose? What dose has been effective for pain for those who have taken it for fibromyalgia and other pain? "Low Dose Naltrexone" is made by a compounding pharmacy from regular Naltrexone. You can read about it here: http://www.lowdosenaltrexone.org/ Naltrexone comes in 50mg pills. My doctor told me to take one every other day, but he thought they were capsules. I took 50mg the first night but was somewhat frightened by it (I've had a lot of bad medicine reactions, so it might have been just that anxiety). I asked if I could go down to 25mg per night for a week, then I'll go to 50mg daily. The first 50mg dose had me back on the feet the next day! (From fibromyalgia pain so bad that I could barely manage to walk) At 25mg, the pain is coming back in late afternoon. It's done nothing for the phantom eye pain and hallucination. Hope this helps! Polly Link to comment Share on other sites More sharing options...
mutts Posted January 11, 2011 Report Share Posted January 11, 2011 Hey Joe, Thanks for taking the time to write this and keep everyone updated. My visual symptoms are by far the most aggravating aspect of this disease and it is nice to have a little hope that something may help. Link to comment Share on other sites More sharing options...
joe Posted January 12, 2011 Author Report Share Posted January 12, 2011 robbie, I don't know how much you partied during the holidays but my partying had a pretty negative effect on the progress I was making on naltrexone. I'm still better off than where I was prior to taking it but some of the effects of that partying still seem to be lingering a little bit visually I guess, afterimages, ect, kind of like you are talking about. It's slowly going away though and I feel fine otherwise. good luck Link to comment Share on other sites More sharing options...
LarryC Posted January 13, 2011 Report Share Posted January 13, 2011 "Low Dose Naltrexone" is made by a compounding pharmacy from regular Naltrexone. You can read about it here: http://www.lowdosenaltrexone.org/ Naltrexone comes in 50mg pills. My doctor told me to take one every other day, but he thought they were capsules. I took 50mg the first night but was somewhat frightened by it (I've had a lot of bad medicine reactions, so it might have been just that anxiety). I asked if I could go down to 25mg per night for a week, then I'll go to 50mg daily. The first 50mg dose had me back on the feet the next day! (From fibromyalgia pain so bad that I could barely manage to walk) At 25mg, the pain is coming back in late afternoon. It's done nothing for the phantom eye pain and hallucination. Hope this helps! Polly I also am looking to use it for fibromyalgia pain. Thanks. Went to my doctor yesterday and needs me to adust to some other meds I am taking for other reasons first and show improvement. I see him in a month and then we will discuss again the use and prescribing it for m. I asked and he said there are no major contraindications foe this med, Link to comment Share on other sites More sharing options...
LarryC Posted January 13, 2011 Report Share Posted January 13, 2011 Hey Joe, Thanks for taking the time to write this and keep everyone updated. My visual symptoms are by far the most aggravating aspect of this disease and it is nice to have a little hope that something may help. I do not know what your med history or drug use is or was. Some people find visual symptom reduction with Klonopin and Keppra. Link to comment Share on other sites More sharing options...
joe Posted January 18, 2011 Author Report Share Posted January 18, 2011 Went down the Keppra route, it was a absolute nightmare for me, don't want to get into it. I guess it helped with afterimages a little bit but overall, complete nightmare. I guess the one thing that I could say I didn't do in my favor during most of that time was that I was still smoking weed but I don't think it would have been that different in my case. It's helped a couple of people but a lot of people it hasn't done much for and made them more depressed. Guess that's already been said. Link to comment Share on other sites More sharing options...
robbie123 Posted January 19, 2011 Report Share Posted January 19, 2011 Hi folks anymore updates with the naltrexone ive stopped didnt do much for hppd . Link to comment Share on other sites More sharing options...
eric Posted January 22, 2011 Report Share Posted January 22, 2011 Hey Joe, can you give us a quick update of your progress with naltrexone ? I hope it still helps you. i have hppd for 4 years and didnt take meds yet. hopefully my doc is willing to prescribe me naltrexone or clonidine. did anybody try clonidine ? eric Link to comment Share on other sites More sharing options...
Polly Posted January 24, 2011 Report Share Posted January 24, 2011 Hi folks anymore updates with the naltrexone ive stopped didnt do much for hppd . Hi Robbie, I stopped too - it made me very sick. Link to comment Share on other sites More sharing options...
robbie123 Posted January 24, 2011 Report Share Posted January 24, 2011 Dr abraham is trialing a drug that has shown promise in dealing with hppd does anyone know what it is apparently its an offlabel drug used for something else . cheers robbie Link to comment Share on other sites More sharing options...
LarryC Posted February 1, 2011 Report Share Posted February 1, 2011 Dr abraham is trialing a drug that has shown promise in dealing with hppd does anyone know what it is apparently its an offlabel drug used for something else . cheers robbie Never heard about this. Maybe David would know or can find out. Link to comment Share on other sites More sharing options...
Phenomenon Posted February 1, 2011 Report Share Posted February 1, 2011 Dr abraham is trialing a drug that has shown promise in dealing with hppd does anyone know what it is apparently its an offlabel drug used for something else . cheers robbie Where did you hear this? Your source doesn´t know? Link to comment Share on other sites More sharing options...
robbie123 Posted February 1, 2011 Report Share Posted February 1, 2011 I spoke to dr abraham on the phone about it and i believe if memory serves me right theres a bit about it on the website on the comments i think and here is an email he sent me . Dear Robbie: I would be pleased to discuss your diagnosis and treatment by phone. I'm sorry I missed the call today. I can best be reached any time between 9 AM and noon EST at the number you called (though tomorrow I am traveling). I am reluctant to put any experimental treatment on the internet, for fear of unleashing a wave of dangerous self-medication. Suffice to say the current medication trial involves an approved drug for other conditions, and requires normal liver function tests for its use. Sincerely, Dr. Abraham On Tue, Jan 11, 2011 at 2:59 PM, Henry Abraham <henryabrahammd@gmail.com> wrote: Dear Robbie: I havent phoned him yet due to the time difference i keep missing him- it would probably be better for someone in the usa phoning and getting the information Link to comment Share on other sites More sharing options...
robbie123 Posted February 1, 2011 Report Share Posted February 1, 2011 This is my first email from dr abraham when i was enquiring about medical cannabis for treatment for hppd related pain and muscle issues fybromyligia . Dr. Abraham On Tue, Jan 11, 2011 at 2:59 PM, Henry Abraham <henryabrahammd@gmail.com> wrote: Dear Robbie: My observations of patients with HPPD using cannabis have been that the HPPD invariably gets worse. "Medical" cannabis is still a mixture of scores of psychoactive drugs, made more complex by great variability in production. I would not go that route if I were you. As it turns out, my office is experimenting with a new medical treatment which has promise at this stage. If you are interested in possibly participating in an open drug trial, please feel free to call me office. Sincerely, Dr. Abraham Link to comment Share on other sites More sharing options...
joe Posted February 7, 2011 Author Report Share Posted February 7, 2011 It's still helping but I not at the pace it was when I first started taking it. Side effects are very minimal. Link to comment Share on other sites More sharing options...
windscar Posted February 9, 2011 Report Share Posted February 9, 2011 Robbie please ask him what's the treatment. Link to comment Share on other sites More sharing options...
brendan Posted August 18, 2011 Report Share Posted August 18, 2011 Joe - its been a while since you last posted. From your posts it seems like you got a dramatic improvement in the first week or so and then reached a constant level or at least only small improvements since. How is it now? Have you stopped using it since, and did your symptoms return when you stopped, or were the improvements permanent? And did it have any effect on head pressure (if you have/had it)? Link to comment Share on other sites More sharing options...
Loky Posted November 7, 2011 Report Share Posted November 7, 2011 Would also love an update on this! Cheers Link to comment Share on other sites More sharing options...
leefulford Posted November 9, 2011 Report Share Posted November 9, 2011 Hey guys I recently been taking naltrexone, i take like 5 mg (hard to say as i cut up a 50 mg pill into roughly 10 pieces.) The first few days I got hugeee improvement, improvement that is still with me even when I wasn't taking the naltrexone! I now take it spuratically but I am wayy better. Can not say for certain if it was the naltrexone that made me better (I am around 60% better visually with my anxiety almost gone ) as it could be my acceptance of me having hppd or someother psychological phenomen however it did get better after taking naltrexone and so I can not help but recommend this drug to everyone to give it a try. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now