Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group LDN how many people are using it?

Hi,
I heard soo much about LDN, I asked my DR about it and she seemed clueless about LDN. HOw many of AS poeple are using LDN and what has been the results? Also to the users of LDN did u ask ur DR prescribe it or he recommended it to u?

me . . but I've missed several.

I asked for it. great results when I'm consistent

I have been on 4.5 mg dose for almost a year now....there was definite improvement when I started and it has remained so.

i have a spondy, but not sure which one yet, new rheumy evaluating that.

anyway, i'm on it, have been for a little over a year now. my experience has been that it does not prevent inflammation, but once i have it, it allows my body to get rid of it faster, and allows my body to heal up tendons and ligaments faster. for me its an important tool in my toolbox, though still looking for a drug that prevents inflammation as well.

the way i got it was suggested to me here and described on the LDN website as well. i contacted my local compounding pharmacist and asked for local doctors who prescribed it. got that name, made an appointment with that GP. but then when i told my rheumy about it, gave him scientific journal articles, showed him the info on clinical studies as reported on the LDN website, he agreed to write the prescription so long as i was willing to pay for it if insurance said no. i made that offer because i know its relatively inexpensive, but insurance does cover all but my copay. but i am afraid that as i change rheumies it will no longer be prescribed, so i've rescheduled with that GP that my compounding pharmacist told me about. my new rheumy is fantastic, but when he heard me say it didn't stop the inflammation in the first place, that wasn't good enough for him, not sure he'd continue me on it, though he might if he knows it helps me immensely on the backend (in the healing process).

tendons that would have taken months to heal now take days to a week or two to heal. feet that would have taken weeks to recover now take a few days.

it is an important component to my regiment, just not enough by itself, IMHO.

and, btw, i've yet to meet a doctor who has heard of it.

Sue, this:

tendons that would have taken months to heal now take days to a week or two to heal. feet that would have taken weeks to recover now take a few days.

should be all your new rheumy needs to hear, I would hope.

Habib, I've never been on LDN, but I watch how our KAers are doing on it. It would be nice if it could be proved to help AS so that some of our family who don't have good drug plans could get some relief.

Hugs,

thanks kat!

at least the new rheumy was interested enough to want me to explain how the LDN helped me. if i had said it made me near perfect, i think he would have been more excited, but seeing that i traveled so far to see him, he probably figured out that LDN alone just wasn't cutting it. glad that he wasn't satisfied and wants me to do even better, cause i want me to do even better. the risk of really messing something up royally is still too high.

interestingly the rheumy that prescribed it to me, the first person he ever prescribed it to, never asked me about it when i asked to have it renewed.

what is the offical website for LDN tht u are referring to?

Hi habib,

I would not expect any doctor to be familiar with LDN for use in AS. While it is an older medication used to treat something else entirely, for use in treating autoimmune diseases, it is still experimental/trial stages. At this point, I don't think there have been any studies conducted for the purpose of treating the AS patient population, so it is still unknown for this and would be considered an 'off-label' use of the med, where it is being prescribed for some. At the low doses required, it is considered very safe.

I am sure if an LDN study for AS gets completed, one of our members will post it up for us in a heartbeat!

Take care,
mig

Hi Habib - been on LDN for about 6yrs now. First heard of it thorugh Bridget when she first posted about this m ed. Worked pretty well for me - took the main sting out of the inflammation, but does not seem to 'stop' all the inflammation and does not of course cure any damage caused *by* the inflammation.

I started with 2.75mg and slwly moved up to 4.5mmg and am now on 6mmg. I think that the 'working' has slowed down somewhat, though, will saya that after stopping for about a week and re-starting, I have noticed it is working a tad better.

BTW, it also helps with gut problems. Think that the Mayo clinic is conducting a trial for use in Crohn's disease - dunno how far along they are with this trial.

As for the webiste. Try lowdosenaltrexone.org That will/should lead you to the full world-wide LDN sites.

Yes, as Mig pointed out, LDN is off-label use for AS, RA etc - but has been used by any number of MS sufferers for a considerable time now. The MS Association is trying to get it recognised as a proficient drug for use for MS patients - the fight to get recognised is on-going! Meantime, the low dose is such that it does not cause side effects - apart from vivid dreams (which did not happen to 'me' until very recently - right weird they were as well, but have not had for a few weeks now.)

LDN is scripted for addicts: drug, alcohol etc, at 50+ mmg per day. So, 4.5 - 6mmg is indeed a 'low dose'. No, most doctors have not heard of its use outside its main use (addicts) and certainly have *never heard of it for AS, RA etc etc (including also for cancer and HIV!) Suggest a visit to the LDN websites - you will be facinated. Then, print out the pertinent information (as Sue did) and bring to yr GP...see what happens. But, don't be too surprised IF GP shakes head... You 'can' get a pvt script (as indeed I do, from UK) and yes, a pvt script is *also available in Nth America, 'smile'. Follow detail on LDN website. OK?

Hope this has helped.

Molly C (France)
Keeping on Keeping on (as one does, innit?)

I am, and it's working out great for me.

I had to take printouts of all the info from lowdosenaltrexone.org to my GP, and then I tried everything her way for 3 months before she prescribed it.