CRPS and LDN study at Stanford
 

https://clinicaltrials.gov/ct2/show/NCT02502162

Not sure about this study. It appears to last a fairly long period which makes me wonder if they will be able to get enough participants for a valid study.

The reason its being done over a fairly long period of time (2 years for recruitment, carrying out all the testing and collection of all the data and a further 2 for analysis, drafting, review, touting round journals etc) is to ensure that they are able to recruit enough participants. They are only looking for 40 people with CRPS so its a small scale trial. The eligibility criteria are also extremely wide which will aid the likelihood of recruiting the necessary numbers - they could hardly be any wider!!

Yes I noticed the number and I noticed the eligibility criteria, but I wonder and I am concerned about several things. The listed LDN dose is 4.5, there is no mention of starting at a low dose. The time frame is a hurdle. I know I would not agree to possibly take a placebo for a long period with CRPS.


"Changes in pain severity-approximately 4 weeks after conclusion of treatment?" This is confusing. It sounds like 4 weeks after the end of LDN treatment pain severity will be measured. From everything I have read once LDN is stopped symptoms return.

Primary Outcome Measures:
Changes in pain severity [ Time Frame: Approximately 4 weeks after conclusion of treatment. ] [ Designated as safety issue: No ]
Daily pain reports on a 0-10 numerical rating scale for pain, where 0=no pain and 10=pain as bad as you can imagine

This is interesting. Just yesterday I was discussing may take on my experience w ldn.
It does not take away most of my symptoms, just the hot sensation from the crps 2. It still stings, changes colours, swelling etc.
I also take ldn for PTSD. I still get obsessive and play things over and over in my mind. I just not so edgey.
Also I seem to have developed a tic after I started taking ldn.
So I want to really understand this research.
Thanks.

PS... I want to add if I miss just one dose.....my body is in terrible pain all over.

Enna,

I found an LDN forum on a Crohn's disease site which has lots of info. pertinent to all users of LDN.

It seems there are many variables involved in achieving success with LDN.

If you have disturbed sleep it was suggested that you lower the dose you are taking. Others suggest you take your dose 4 hours earlier than you have been taking it. The following link is from another board with different ideas about taking LDN earlier. http://ldn.proboards.com/thread/1470...-zagon-gilhool

People commented that the filler used by the pharmacy caused issues. A few people said they were given slow release, not the fast release LDN required.

Other people commented that they were given old LDN which was not efficacious. Stale pills. Some people found that when they switched providers of LDN they had a remarkable improvement.

One poster named Kev successfully took LDN from 2006-2014, but lost his remission, in his case there were lots of factors which could have contributed to his negative outcome, while another poster said that after taking LDN he was completely cured.

http://www.ldnresearchtrust.org/site...s/dr-zagon.pdf

https://sfbay.craigslist.org/pen/etc/5232603422.html

The Craigslist ad for the Stanford LDN study.