looneymom Posted November 6, 2014 Report Share Posted November 6, 2014 I have been reading up on this medication and have been reading about the clinical trials. It has been used with fibrmyalgia patients and it has also been used as an anti-inflammatory treatment for chronic pain. I was just wondering if anyone has used this medication and if it helped. I understand that it has to be compounded and that most insurances will not pay for it.My son is still doing plasmapharisis 3 times a week but still not seeing any major symptoms (headache, scalp pain and tremors) go away. The treatment is not making any symptom worse and he is staying well. He has had a few viruses but it never last more than a few days. So I do think the treatment is helping in some ways. There are a few small symptoms that have stopped all together. He has a doctor's appointment next week . My guess is that another medication may be added to surpress his immune system but I plan on asking about this medication because it also helps with so many autoimmune diseases. Here are few articles and a home website that gives more information about LDN. If anyone has used this medication, I would really like to know if it helped your condition.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3661907/http://www.lowdosenaltrexone.org/index.htm#What_diseases_has_it_been_useful_forhttp://www.ldnscience.org/low-dose-naltrexone/published-research-about-ldn/clinical-trials Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 6, 2014 Report Share Posted November 6, 2014 Hi Rachel,I haven't used this but I know there were one or two threads about it a couple years ago. It may be worth it to do a search on here. Also, I'm going to post some articles a little later when I'm on my computer instead of my phone. My immunologist had me read them as he thinks it may be at the root of my issues. I thought you might be interested in them. I'll get them up tonight. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted November 7, 2014 Report Share Posted November 7, 2014 Hi Rachel,I'm sorry Tyler is still suffering so. I was prescribed LDN several years ago by my then Rheumatologist. First 3mg then 4.5mg. I tried it for 6 months but unfortunately realized no benefit from it. I suffered no ill effects from it either. I thought it was worth a try as some have benefited from taking it. You're right in that it has to be obtained from a compounding pharmacy and insurance coverage is a problem. I ran into a friend recently who is a pharmacist. He works in a compounding pharmacy where he says they handle a fair amount of LDN prescriptions. I hope you have success with this medication. Janet Quote Link to comment Share on other sites More sharing options...
targs66 Posted November 7, 2014 Report Share Posted November 7, 2014 I tried LDN several years ago. Unfortunately, it made me far too spacey and dopey, even at very very low doses. I didn't have any other ill effects. One of my biggest problems in generally is extreme fatigue and brain fog, so I had to stop taking it. I found it absolutely impossible to focus on anything. It's a shame, because it did make me feel sort of relaxed and peaceful -- but I literally was having difficulty doing things like dialing a phone, so I had to stop.I hope it can help your son - keep us posted. Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 8, 2014 Report Share Posted November 8, 2014 I've been using it for about 2 years and have found it helpful for sleep and body aches. I wasn't sure it was helping until I stopped it and then it became quite clear. I've heard on other forums that it can take 4-6 months for some people to notice effects from it. There are several things that need to be considered when it's being compounded so be sure you have a reputable pharmacy who knows about those issues. Some of those specifics are reportedly that they shouldn't use long acting naltrexone and it has to be compounded with specific fillers that won't render it less effective. There's an LDN site that lists which those are but I don't have the reference right now. I'll try to find it for you. My insurance was covering it but recently stopped. It's still relatively inexpensive compared to many of the other meds I'm on. Good luck! Quote Link to comment Share on other sites More sharing options...
looneymom Posted November 8, 2014 Author Report Share Posted November 8, 2014 The doctor that wrote the first article on using LDN is a pain mangement doctor. I found a power point presentaion that he did at a conference last year. He does mention other medications that are used to treat CRPS. I have emailed this on to Tylers doctor but I thought some of you might want to see this power point as well.http://crpspartnersinpain.com/wp-content/uploads/2013/12/CRPS-update-on-treatment-2013-Philly-06-Compatibility-Mode.pdf Quote Link to comment Share on other sites More sharing options...
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