Low Dose Naltrexone

[saskia15]

Hi Everyone, has anyone been on the above for Rheumatoid Arthritis? What was the outcome and how did side effects make you feel?

[helixhelix]

Did you mean Naltrexone, as I've not heard of that being used for RA? Or was it predictive text taking over for Naproxen which is a NSAID I've used in the past with no problems whatsoever.

[saskia15 in reply to helixhelix]

I did mean Low Dose Naltrexone . It is sucessfully being used in America for people with RA who have bad reaction to high dose drugs. I cant tolerate most doses of steroid, ibruprofen ect. and have spent last six months recovering from these drugs. so trying to find someone who has been using it. thanks for your reply

[linziej in reply to saskia15]

Hi

Did you ever go on the low dose. I would love to hear how your getting on? I'm thinking of doing the same.

[nomoreheels]

Hiya saskia15. Like Helix I've not heard of Naltrexone being used to treat RD. It is a drug but it's use is generally in drug dependency, for those who have been using opioids but need medical help to stay off them, when it's prescribed part of an abstinence programme as I understand from NICE.

If you could expand & outline what was discussed when it was suggested you start on it that may help.

[earthwitch in reply to nomoreheels]

lowdosenaltrexone.org/ - in low dose formulation its used for quite a wide variety of autoimmune conditions. Its a kind of "off-label" use as it hasn't been thoroughly researched, but it is allowed to be prescribed in the NHS on a named patient basis if your doctor (GP or specialist) is OK about it.

[nomoreheels in reply to earthwitch]

But for RD, this was the question? I've had a quick look at the UK sites (US not always comparable as the FDA sometimes don't sing from the same hymn sheet) & it appears LDN is in the main used for MS, Lupus, Fibro, some Cancers & Autism, some other conditions too though it seems for some it still appears to be a bit of an under-the-counter med. The LDN Research site was interesting reading.

Pleased it's working for your AS though, any med that helps is worth trying I'm sure you'll agree.

[nomoreheels in reply to earthwitch]

I wrote my reply before you added to yours earthwitch, seems we agree, it does appear it's being used in some cases for autoimmune conditions (can't find any evidence of use in RD as yet) though not as a normal prescription as more traditional meds are.

[earthwitch]

Yes, I take Low Dose Naltrexone, but for ankylosing spondylitis. I had virtually nothing in the way of side effects, slowly building up from 2 mg to 4.5 mg taken in the evening. I asked to try it, as I was not being treated for AS, having been caught in the middle of a dispute over my diagnosis (current rheumy says I don't have AS, even though I have a confirmed diagnosis from another rheumatologist) so I'm not therefore eligible for anti-tnf treatment, and have used up my options for NSAIDs and allergic to sulfasalazine. GP was happy to prescribe.

What it does for me is that it seriously modifies my pain responses, so even though I can be very stiff and even feeling quite achy, I can kind of ignore pain, and I can still cope with only taking the occasional paracetamol. I think it also does modify the autoimmune response a bit, though it doesn't seem to stop all the inflammation. LDN does a fairly good job of keeping things just about manageable for me, but if I had the choice I'd jump at the chance to try anti-tnfs in preference, as I think they would do more to address the underlying disease. I do know a few folk who take LDN as well as other treatment.

Just be aware that on LDN you won't be able to take any opiate painkillers at all. For me that was what delayed me starting LDN for quite some time as I was on fairly high doses of codeine to manage pain. It was only when I had a really nasty flu, couldn't eat for about five days, and couldn't even take my codeine, that I decided since I had gone through the cold turkey withdrawals I wasn't going to go back on codeine, so had a short course of steroids to tide me over for a couple of weeks as I started the LDN.

There is a lot of advice and information on the lowdosenaltrexone.org web page. It hasn't really been studied much for RA or AS, but has shown good results for other autoimmune disorders including crohns and colitis, and also MS.

[saskia15]

Thanks you are exactly what I wanted. I thought it might help me as I am very sensitive to most drugs only painkillers I can take are paracetamol. I hoped as it was low dose I might be able to tolerate it. As you say it doesn't do too much for Auto immune I won't be trying it. many thanks again

[cacj56]

hi saskia 15 -

you've probably learned a lot about ldn since you posted the question. of course, i can't tell you how it'll affect you, but i can tell you of my experience.

i was diagnosed with ra eight years ago, in 2008, and, over the years, was prescribed prednisone, plaquenil, methotrexate and leflunomide (generic arava). while some of these medications were helpful in some respects, i felt ill much of the time and experienced varying levels of pain for which strong narcotic pain medications were prescribed.

at one point, i decided these methods weren't working well enough for me for me, and, after much research and "trial and error," i made some major changes before starting "low dose naltrexone" (ldn). i changed my diet, eliminating wheat, dairy, refined sugar, and caffeine, and began eating organic as much as possible. i exercise regularly (walking and bike riding). i drink very little beer/wine. over the course of a year, my gastro-intestinal issues, which had arisen, i believe, in large part, as a result of all the medication i was taking, resolved. i gradually weaned myself off all the prescription medications except leflunomide. i had all my amalgam fillings replaced with biocompatible materials (after which i felt significantly better). then, i weaned myself off leflunomide and started ldn slowly, as i too am very sensitive to medications (beginning at 1.5 mg 2 months ago, building slowly to my current 3.5 mg (my plan is to increase 'til i reach 4.5 mg if my doctor will agree)). because of all my lifestyle changes, which i believe have contributed to the improvement in my health, i can largely manage the pain with non-prescription substances like bromelain, serrapetase, curcumin, and ginger). i feel my condition is steadily improving with ldn.

i've had insomnia for years, and, while i've found it worsened when i started ldn (and worsens for a short while when i increase my dose), my insomnia is much less now than it was before starting ldn, and i get a much better night's sleep. for me, l-theanine, which i believe is an amino acid (i only buy a "suntheanine" formulation product) and available at health food stores including vitacost.com, taken at 100 mg, helps me fall asleep on those days when i do have insomnia. i don't have any other side effects from ldn.

so far, ldn has been somewhat effective for me and i hope my condition will improve with time. my fatigue has lessened, i feel more rested after sleeping, my pain is less, less joints seem impacted by the ra. for me, ldn has been part of a comprehensive plan to improve my health, which includes all the above and many supplements, which i've chosen over time. i anticipate it'll take some time on ldn to reach the maximum beneficial effect. i wish you the best with whatever method you try.

[Em13]

For people who want to be proactive about treating their RD, it is not uncommon to try LDN along with dietary changes. (There is a Yahoo Group specifically for RD and LDN, and various general LDN forums too.) I have been taking it for about 10 months, which was soon after my diagnosis. It is hard to say what it (or anything else I do or take) does because I'm at a very early stage with the disease and haven't really experienced joint issues.

Some members on other forums get really good results. For me, it helps me sleep and makes me feel more positive, especially if I take it in the morning rather than at night. I haven't had any side effects from it, unlike Plaquenil, Sulfasalazine and NSAIDs. I did notice increased achiness when I didn't take the LDN for a few days, so will stick with it.

Like cacj56 I worry what the meds (particularly long-term antibiotics) are doing to my GI tract, so I take various supplements including colostrum and probiotics.

LDN is definitely worth looking into!

[Paulajolo]

Thank you cac56 and Em13 I have had a terrible time with drug allergies for the past 22months including 2 biosimilars MTX Sulfasalazine etc so I am going to ask my consultant next week about LAN Naltrexone. It might just work for me. Need to get off these nasty steroids.