Health Organization for Pudendal Education

Here are some refs & Wikipedia links on an interesting trend in pain medication research. Tell your doc about it if you are intrigued.

http://onlinelibrary.wiley.com/doi/10.1 ... 613.x/full
http://www.jpain.org/article/S1526-5900 ... 5/abstract
http://www.jpain.org/article/S1526-5900 ... 8/abstract
http://en.wikipedia.org/wiki/Low-dose_naltrexone
http://en.wikipedia.org/wiki/Oxytrex

Sounds similar to suboxone -- the drug Cora was having success with.

I started on low dose naltrexone (LDN) about 6 months ago and wanted to post my experience. I started investigating LDN after I saw this post and a physician in CA that treats individuals with CRPS/RSD has all her patients on it. Naltrexone was originally developed for individuals with substance abuse to replace the drug they abuse. It blocks the opioid receptor such that if an individual is taking this at the full dose if they are given pain medication it can cause an overdose. However, at low doses (1/100 to 1/10 the normal dose) naltrexone has effects on modulating the immuno system to decrease the inflammatory response. There is great research showing the success of LDN has on Crohns disease to heal the lesions in the intestines. There are many physicians and researchers that belief individuals with CRPS or for that matter chronic pain patients that it may be due to an inflammatory response thus a dual role of LDN for chronic pain patients. LDN, at low doses can help control pain and decrease inflammation.

At a visit with my family doctor about 6 months he suggested I try LDN and I told him that I had been thinking about asking him if he would be willing to try me on it. He told me if I could find a compounding pharmacy to make the LDN as it has to be specially made that he would order it for me. After several phone calls I found a local compounding pharmacy that makes LDN. I started at 4.5 mg every night before bed. The few nights I had terrible insomnia (worse than normal) which slowly improved over a 3 week period back to my usual baseline. The first month the pain was worse but then slowly went back to my baseline. After the first 3 weeks I was about ready to give up. I did more reading and found out that my side effects were common and they would go away with time. After about 3 months I started to notice a small difference. I noticed that I didn't flare quite so bad and that my flares didn't last as long. I still continue to take LDN at 4.5 mg and hope with time that I will be able to continue to decrease my opioid use.

I joined a Yahoo LDN group that is a wealth of information. There is a website dedicated to LDN.

http://www.lowdosenaltrexone.org/

I have attached a review article for anyone interested. Also, a drug company is in the process of developing a drug that has LDN plus an opioid for pain management that is in the process of clinical trials and working with the FDA for approval.

Sorry guys, my files won't upload because "The board attachment quota has been reached." Maybe one of the mods can fix this for me and I can upload the files.

nyt, you can e-mail it to me and I'll see what I can do. Will PM you my e-mail.

Violet

Thanks NYT for posting this info on LDN..
A new doc Im seeing is considering the possibility that my severe pain could be caused by inflammation that has never been treated..
I started a med , but the LDN sounds intriguing.. The pain med I use is a strong one but has been mainly useless.
Has anyone had a good pain relieving response yet to LDN or is it too soon to know.
Thanks for any info..!

A good article about the use of LDN with fibromyalgia which is a form of centralized nerve pain. Many of us with PN I believe have underlying central sensitization/CRPS as well. http://www.rsds.org/pdfsall/Younger_Low ... rexone.pdf

Hi Faith,
Thx for posting this article..I have been thinking of asking my pelvic doc as well as the pain docs about LDN.
This sounds preferable to any narcotic.. I will bring this up to the docs Ive been working with lately. Have you brought it up to your docs yet?
Hope you are doing okay..I think of you often.
I am pursuing various things along with PN and will need another new MRI soon...Am trying to find a hosp /MRI place willing to give me light anethesia so I can lie on the MRI table..
Thx again for posting this info.
Kathy

This is interesting - particularly the strong correlation with ESR. This isn't something that we would normally expect to be elevated with PN - or not that I've heard - so it probably wouldn't help us.

I think that perhaps it tells us more about the link between fibromyalgia and general levels of inflammation than anything else.

Does anyone have any information about elevated ESR being connected with PN?

Sorry
Must 've missed this but what is elevated ESR>
Thx