Saturday, April 10, 2010

MS Chat Followup Info: Low Dose Naltrexone

Thanks to the seven chatters who visited the Delaware Area MS Chat last night. 
NEXT CHAT: April 23.

"Open Mic" night seemed to work out very well.  We talked about neurologists in the Delaware area, scooters, and handicapped seating in public spaces like movies and concerts.  We touched on CCSVI and collected a few questions to submit for the upcoming webforum.  

Lose Dose Naltrexone (LDN) received the most attention, thanks to Taggie, and here is follow-up data for those of you who are unfamiliar with it.  LDN is a drug that has been credited with helping to improve many MS symptoms.  The NMSS released a paper in March 2010 (found HERE) stating that in a clinical trial involving 60 people with all types of MS, LDN improved some quality of life, mental health, and pain symptoms. This paper has been accepted by the Annals of Neurology, abstract found HERE.  There are more clinical trials in the works, and you can read about them HERE.  LDN is being used throughout the world, and you can see the global tracking database HERE.

Because LDN is "off label" for MS, it won't be covered by insurance but is relatively cheap.  You can NOT take it with Avonex, Betaseron, or Rebif, but you can take it with Copaxone.  There are other drug interactions to be aware of (like cough syrup), so be sure to do some research before asking for a prescription.  LDN must be obtained through a compounding pharmacy because the regular dose is much higher than the low dose used with MS patients.  In Delaware, a compounding pharmacy is the SaveWay Pharmacy in Newark (Albe Drive, off of Old Baltimore Pike).  

Taggie credits it with helping to relieve many of her symptoms, and I thank her for sending me so many links to credible informational sites.  I suspect she'd love to tell you more if you have any questions.

Here are a few more links if you want additional information:
Low Dose Naltrexone Home Page is HERE
Julie's LDN Journal that tracked her experience is HERE
Video from 2008 CBS news report is HERE


1 comment:

  1. Joan,

    We did have a wonderful chat last Friday, for sure, and I do love your open chats!

    I do appreciate your kind words regarding my "credible" information about LDN I sent to you. I have done untold hours of research since my dx in May 2008, and would not offer anything less. I was so happy someone noticed I put LDN by my chat name and asked about it in the chat! :o)

    LDN is safe to take, but not with any narcotic drugs such as Ultram (tramadol), morphine, Percocet, Duragesic patch and any codeine-containing medications. I recently had two hand surgeries last year and stopped taking my LDN a day before surgery, in case I needed to be on any strong pain meds. Since I wasn't, I started right back on the LDN the very next day.

    I would be happy to answer any questions regarding my personal use of LDN and what it has done for me, or refer them to a credible site for that information.

    One thing I firmly believe in is that all of us have access to any and all possible treatments for our diseases. I feel quite capable of making my own decisions and/or choices regarding the treatment for my body, and I feel everyone else should, too.....not just the expensive treatments big pharma chooses to research, or those doctors who won't get "out-of-the box" in their thinking.

    One added insurance company had no problem in covering LDN for me. I pay $20.00/mo. for 30 compounded capsules, taking one oral pill at night.