Kickas.org Forums Rheumatoid Arthritis General Discussion #1 RA Web Support Group wendy, other RAers, try LDN!?!

wendy,

been thinking of you and how the MTX just doesn't seem to be cutting it. but how you need to go through these other drugs before being able to consider the biologics.

anyway, didin't think LDN had been shown to be effective for RA, but had a really interesting conversation with my compounding pharmacist today.

he's very interested in how patients are responding to LDN. when i told him that for me, it doesn't seem to stop the inflammation, but seems to allow the body to rid itself of it in days vs the typical weeks to months. he said that description of not preventing it, but getting rid of it, sounded just like some of his RA patients describing how it works for them. and so i immediately thought of you.

came back here, did a little googling, and found this:

http://www.webspawner.com/users/ldnforra/index.html

looks like LDN might be a viable option for someone with RA. looks like it really could work.

so was thinking before you move on to the biologics, maybe try LDN first?
its cheap, relatively speaking,
its safe, far as they can tell, and long term history for use at the higher doses,
few if any side effects, some say issues with dreaming / sleeping at first,
but honestly, i never noticed a single side effect,
and for me, i'm very prone to side effects.
drugs work very well for me, both as they should (the good) and the side effects (the bad).

so just thinking, maybe worth a try.

seems the way to get it if your current doctor(s) aren't too keen on it is to find a local compounding pharmacy, ask them for names of local prescribing doctors, then get an appointment with that doctor. for me that would have been a doctor that mixes traditional western and alternative medicine and doesn't take insurance so all visits out of pocket, but my rheumy did take a chance on LDN so didn't have to go that route. don't know exactly how things work in canada but still think its worth considering.

thinking of you

i have a friend with RA and his doc got him on LDN. within 2 weeks he went from not being hardly able to move his fingers to now able to go back to work.

Thanks, Sue.

My rheumy wouldn't touch it when I asked him last year. So it might be a case of trying to convince my GP that it could be worth a try.

I increased my mtx today to 22.5 mg and next Friday it will go up to 25 mg. I guess I'm going to see that through before I give up on mtx. My inflammation levels (CRP and ESR) had gone down even further and my GP feels that some of that has to be attributable to mtx because he thinks my pred level (6mg) is too low to achieve that kind of improvement. He did agree that lower levels of inflammation don't necessarily translate into lower pain levels.

that's really encouraging news jet!

i'd probably continue in that vein as well, spent so long on it, need to finish it through, i understand that.

i was really surprised my rheumy agreed to it, but i think its because he had made up his mind that he wasn't trying me on the "scarier" drugs (SSZ, MTX, biologics) past the NSAIDs (honestly i was surprised he had to try three on top of all the ones i'd done in the past plus the cox 2 inhibitors, with relief but side effects). but i held him to his promise to help me, so that may have been why i was able to convince him. that plus the pubmed journal articles on the clinical trials for crohns (a related spondy) and fibro patients with inflammation too. as you know, doctors tend to acknowledge articles from peer reviewed journals more than web pages, other not peer reviewed things. so used the ammunition i figured most likely to work.

but honestly i was shocked it worked. also i was incredibly bad at the time (like it sounds that you usually are), out of work, back pain so severe it was giving me a stomach ulcer, not sleeping, etc. in his office, pacing the halls with an ice pack cause too painful to stand, sit, or lie. if i had gone in doing fairly well like i often am, doubt i would have gotten the script. that or one of the more traditional drugs like you're taking, but something. but had to make this emergency appointment so he could see just how bad it can get. you'd think a rheumatologist would understand flares, since that's one of the hallmarks of many rheumatological diseases.

so i wasn't really planning on him helping me, was planning on going to the doc recommended by the pharmacist. just assuming i'd have to move to plan B, but then plan A worked. still nice to have a plan in one's back pocket.

was kind of expecting it to work as well as NSAIDs are preventing inflammation but between the LDN removing the inflammation and the flector patch preventing it in the SI region, i'm getting by at the moment not too shabbily.

but yes, understand why you are continuing (for now) with the MTX.

I'm currently researching th1/th2/th17 stuff in relation to AS and other diseases. Still learning so sorry if this sounds like gibberish.

What is interesting about diseases such as RA is that they involve overproduction on the th1 side. AS is relatively neutral as far as th1/th2 balance goes and is considered to be a th17 diseases. Other diseases like asthma overproduce the th2 side.

Oversimplification: The th1 side deals with intracellular bacteria & viruses whereas the th2 side deals with extracellular bacteria. Overproduction of th1 or th2 occurs at the expense of the other i.e. if th2 levels are high then th1 levels are low.

There is also trickery on the part of some bacteria and viruses in which they produce chemicals to trick the immune system into favouring a th1 or th2 response to avoid being killed by the immune system e.g. a virus which would be killed by the th1 side tricks the immune system into producing th2 instead which is not effective against it. The marshall protocol is based on this idea with the theory being that intracellular bacteria divert the immune system to overproducing th2.

What is interesting about LDN is that it has been shown to increase Th1 response and reduce Th2 response. From this you would think that LDN would be most effective at treating Th2 dominant diseases that involve Th1 deficiency as it would try and restore balance. What is intriguing is that it also seems to be effective for th1 dominant conditions. MS is a th1 dominant disease and so you would think that LDN would only exacerbate the imbalance but it appears to help.

Some wild speculation: This may be because th1 dominant diseases such as RA & MS are caused by intracellular bacteria and that the immune system is correctly increasing th1 to try and kill the infection. This could fit with the proteus mirabilis (intracellular?) theory of RA. The LDN may be providing the already dominant th1 side of immune system with an extra boost which helps it destroy the infection.

It also may be true that th1/th2 theory is rather useless as a target for treatment or as an insight into disease pathogenesis. LDN may also cause many more effects on the body than just increasing th1 and decreasing th2. I'm still pretty knew to all this stuff so apologise for any inaccuracies.

Fascinating stuff, jroc! I'm always so impressed with the stuff you come up with!

Thanks Wendy. Still haven't really got a handle on this stuff yet though. This paper may be of interest if you want to learn more about th1/th2 and RA.

"Th2 mediated regulation in RA and the spondyloarthropathies"
http://ard.bmj.com/content/61/11/951.extract

i'm always interested to hear any theories about LDN because i feel so little is known. all i had really read was about increasing endorphins, serotonin, things that allow the body to heal itself, which seemed consistent with the way i feel it works on me, not preventing inflammation, but healing it. but that just seemed way too simple, especially for something like MS, so i like your thoughts even better will be interesting to see what they uncover about LDN in the future.