Unfortunately,I haven't and don't know anyone who has. However, I have seen the question before on this site - for instance in this post which also includes links to research about it. You may want to check it out and perhaps send that user a private message.
Yes. I was diagnosed with RA in 1990. Besides eating a healthy, gluten and sugar free diet, I have used many different drugs (including Remecade, Humira, Orencia, and Methotrexate), but have not yet been successful in halting the relentless progress of this horrible disease.
On the advice and research of my naturopathic doctor, I began taking one 4.5 mg capsule of LDN nightly in mid March of this year (2010) - almost 5 months ago - but have yet to see or feel any noticeable results. I am still hopeful . . . but my constant pain, inflamation, and increasing lack of mobility is quite disheartening.
Any advice from you?
There are people much more expert on LDN than me on the main lowdosenaltrexone group on Yahoo. When people report that LDN isn't working for them, they're usually asked to check various things. Do they get their LDN from a reputable compounder (it shouldn't be "slow release", sometimes the fillers aren't right), candida is sometimes an issue, are they taking immuno suppresants that will stop LDN working, etc.
Some people need to help LDN by taking Omega 3 and Vit d3 and antioxidants - apparently people with auto immune disorders have very low levels.
I've just looked at the results posted to the Arthritis section of the LDNdatabase. 27 people have responded and 65% say their symptoms have improved. Most of the others say it's too soon for them to say, and just 1 reported no improvement.
I am reluctant to accept that there are some people that LDN won't work for so cases like yours are very frustrating and disappointing. The way LDN works is very simple - the production of endorphins is blocked for a few hours and at the end of the blockade the body produces 2 or 3 times more to compensate. This increase in endorphins is what, apparently, has the beneficial effect on the immune system and it starts working properly again according to the individual's body's needs.
Why that process doesn't work in some people has not, to my knowledge, been studied. The only consolation is that LDN does not do any harm.
Hi - I have just been diagnosed with RA and found LDN may be the best choice. My question is, does it only stop the pain, or will it halt the progession of the disease? The doctors are concerned about doing what I can before it progesses. Any information would be extremely helpful!
On the rheumatoidarthritis-lowdosenaltrexone group we find there are no yes/no answers to your questions. Each of us has our own experience. After all our environments, both internal and external, are different and for all we know the causes of our disorders are different. Some people on the group are successfully using other ways of dealing with the disorder, others use a combination, etc.
However, normally the immune system works better as a result of taking LDN and that can halt progression. I found that I went into remission and consequently don't have any more pain.
Whatever happens, it's up to each individual to learn about LDN in the context of the individual's state. I'd recommend you visit our group at Yahoo to find out how members are responding - it's all in the archives.
Since starting LDN in April last year the RA symptoms that had started about 8 months earlier have steadily diminished and disappeared. It took a few weeks for me to get up without stiffness, and that crushing fatigue I'd had for 3/4 years also went away. Unexpectedly, deteriorating vision due to AMD that had also got bad at the same time as the RA, began to at first stabilise and then got better - I now have scarcely any distortion, not enough to notice unless I "look for" those tiny bumps on vertical lines.
Last summer they found I had a carcinoid tumour in the gut, but scans in November showed no trace of any tumour left anywhere in my body. I've not taken any pain killers since being on LDN.
Something that's not easy to understand at first is that LDN has no direct impact on any illness. Taking it brings about an improvement in immune system performance and when the system's been dysfunctioning we can suffer from all sorts of problems.
To my mind I'm still healing but feel really fit. I take vitamins, antioxidants and Omega 3 to help the body respond to my better functioning immune system.
Another RA sufferer and I set up a yahoo group for rheumatoidarthritis-lowdosenaltrexone anyone is welcome to join. If you do you'll see that some people are helped by LDN, others have problems. We'd dearly like to know why it helps some and not others but so far no rheumatologist is prepared to give us the time of day.
I've been on numerous medications for my RA that I've had for over 20 years. I started LDN on February 21st and I'm not getting any better. Do you know how long it takes to work? I don't get the vivid dreams they spoke about either, not that I'm complaning. It's filled correctly and I'm also taking D3, Omega 3, vitamins and herbs.
I have tried, but in vain.
My rheumatologist gave me weird stares when I asked him about it for my painful RA. I even provided him with ample materials on worldwide LDN clinical trials; still nothing.
A GP at the hospital had heard of LDN usage, but he was not qualified to pass judgment and/or its efficacy on RA sufferers.