LDN medication: Hi all, has anyone out there tried LDN... - NRAS

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LDN medication

Ella61 profile image
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Hi all, has anyone out there tried LDN and how did you find it?

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Ella61 profile image
Ella61
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woodstar1 profile image
woodstar1

Just search LND on here and there was a lady on here who was trying it for her RD but she lived I believe in France. I've been reading lots about it and it sounds very interesting and in other countries works very well and it's cheap!!

Ella61 profile image
Ella61 in reply towoodstar1

Yes, it sounds it may be better than mtx and more important not toxic. I shall approach my doctor about it.

earthwitch profile image
earthwitch in reply toElla61

Remember that it won't have the disease modifying effect of MTX and the other DMARDs though, so while it might make you feel a bit more comfortable initially, it may not keep the disease under good enough control on its own (and there is currently no properly researched evidence that it does keep RA under control, whereas there is a lot of evidence for the DMARDs and biologics).

Caza profile image
Caza

I've never heard of it but would like to know more. 

earthwitch profile image
earthwitch

Yes, I take it for ankylosing spondylitis. It is supposed to have some impact on modifying autoimmune conditions as well as modifying your pain responses. In my case, I've run out of cheap options for treating my AS, and I'm not eligible for antitnfs, so I was left without any treatment at all other than maximum doses of codeine for pain and short bursts of prednisolone three or four times a year. I did have to come off the codeine completely before I started LDN (as LDN is an opiate antagonist). I don't think it is really doing anything for ongoing disease activity, but in my case it has been a very effective pain-modifier - I can now cope with only the occasional paracetamol. I'm not pain free by any means, but its a lot better than having the heavy duty codeine that didn't really make me feel that good. I do know of some people who use LDN along with other meds like antitnfs. I personally wouldn't choose to rely just on LDN, but in my case there wasn't much other option.

As far as getting it prescribed, not too many GPs know much about it, and as it has to be prescribed on a named patient basis (i.e. is allowed to be prescribed if the clinician believes it to be useful for the particular person and their particular problem) some doctors just don't want to be responsible for prescribing. If you have one of the recognised autoimmune conditions that it is commonly used for, then you may be able to have a phone consultation with a doctor who will prescribe it as a private patient at your expense. Some of the options and information for prescribing are on the lowdosenaltrexone.org website.

When it came down to it, the reason my GP prescribed it was a) that she already repeated prescriptions for a couple of people with MS (though she hadn't initiated those); b) it was going to help reduce my use of prednisolone; c) it was cheap and with a very low side effect profile; d) I really didn't have any other treatment options (and I think she wanted me to stop bothering her!). I did give her the information sheets provided by lowdosenaltrexone.org first so at least she had some background info.

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