Low Dose Naltrexone

[Simba1992]

Have any of you suffering from RA tried LDN?

[woodstar1]

Hi, I've just been reading about this. Sounds interesting and will keep an eye on this post.

[Simba1992 in reply to woodstar1]

Lots of good results for autoimmune problems. A whole day was dedicated to LDN at the annual medical conference for rheumathology in the US this year!

[earthwitch]

Not for RA but I do take it for Ankylosing Spondylitis, and know quite a few people who also take it for AS.

In my case, its my only treatment option, because my current rheumatologist won't accept my diagnosis (from another rheumatologist in a different part of the country), and so he won't give me any treatment, other than allowing my GP to prescribe short courses of steroids every few months. I had also got up to the maximum allowable codeine per day as my pain levels were through the roof because of active inflammation and widespread enthesitis. I had been reading about LDN and was interested, but couldn't take it with the codeine (you cant take any opiates with LDN). It wasn't until I got the flu, ended up feeling so awful I couldn't even take pain killers and then went through codeine withdrawal as well, that I decided I wasn't going to go back onto codeine. I had a short course of steroids to tide me over, and my GP agreed to prescribe LDN..

I wouldn't say its a replacement for the usual treatment, but if for any reason you can't take the normal meds or have run out of other options, then its definitely worth trying. I find I get a lot of pain relief benefit (it definitely messes with endorphins and pain responses so you don't react to pain in the same way), but while it probably does have some impact on modifying my autoimmune disorder it hasn't really changed my level of disability and isn't nearly as good as oral steroids at 15-20 mg a day. From xrays, my sacroiliitis (on xray) has also progressed since I have been on LDN, so it doesn't seem to be slowing the disease down much if any. You do also need to be aware that your pain relief options will become very limited if you go onto LDN as you can't take anything codeine based or opiate (though with a bit of luck you might not need much pain relief once you start taking it).

Worth checking out the lowdosenaltrexone.org website for information, including stuff you can print and take to your GP. Clinical trials on LDN are very limited though do show some promise in autoimmune inflammatory bowel disease. In the UK, doctors can prescribe it on a named patient basis, if they believe there are clinical indications for it, even though low dose formulations are off-licence. They don't have to prescribe it if they don't want to or feel they don't know enough about it.

Just out of interest, why are you considering it?

[Simba1992 in reply to earthwitch]

Have done a bit of reading on the medication. As you say the disease modefying effect of LDN in RA has not been shown in studies, its more a question of helping your immunesystem to regain its normal function and relieving pain without the toxic effects of NSAIDs. True that the help in RA is most certainly not enough. I am combining LDN with AIP diet ( Antiinflammatory Paleo Diet) and Minocycline treatment. And as you say the needs for pain relief vary as does the progression and nature of RA in each individual and the tricky part is finding what is best for you.😊

[woodstar1 in reply to Simba1992]

So are you actually taking LDN? If so how are you finding it and who prescribed it for you and are you in the UK? Lots of questions I know but some alternative treatments like this are exciting!!

[Simba1992 in reply to woodstar1]

If you want more info on LDN go to ldnresearchtrust.org or ldnaware.org. Here you will find all the info you need to understand the medicine and how to get in touch with doctors who have a lot of experience of treating patients with LDN.

I have just received my first month dose of the medicine and am just about to start☺️

[woodstar1 in reply to Simba1992]

Well good luck and please let me know how you get on!!!

[Hidden]

I've never heard of this. I am very intrested in following this post.

[angel-delight]

Hi, I haven't heard of it either. What does LDN stand for?

Thanks, Sue

[woodstar1 in reply to angel-delight]

Hi, LND stands for low dose naltrexone. I was reading that it has benefited lot of people with all sorts of different conditions. Although initially used to help drug addiction in much lower doses has been proved to help other conditions. Don't know much more, but I'm having a read up about it!

[Simba1992 in reply to woodstar1]

Promising results in treatment of Chrons disease and MS as well as Fibromyalgia. Many patients with autoimmune conditions have been able to wean off toxic pain medications with LDN.😊

[Julie_R]

LDN has helped me.

Please see my other thread "LDN, collagen, and other alternatives" for my personal experience so far.

Also, much info in the LDN conference archives.  This was a 3-day medical conference, not just a bunch of enthusiasts.  See ldn2016.com.  Focus seminars on MS, cancer, fibro, thyroid disorders, pharmacology, etc etc...not specifically rheumatoid disease, but it was included in pharmacist data and in the GP's who presented anecdotal experience with dosage and range of benefited conditions.  

Also see the recently-published book "The LDN Book" by Linda Elsegood; pretty technical, but treat it like a reference book, and it's not too overwhelming.  This is not some whacky alternative drug.  LDN has a solid physiological action that affects various AI conditions, and it continues to accumulate positive clinical data.

[GreenBlue22]

I have!! I didn’t stick with it to know or remeber if it helped RA, and started it to help Hashimoto’s. Many Hashi’s patients take it and have good luck getting antibodies down and some of the worst symptoms of it improve.

[KittyJ in reply to GreenBlue22]

Th is a post is 9 years old so you may not get a reply