low dose naltrexone

Has anyone tried or had a good response to low dose Naltrexone?

[earthwitch]

Yes, I'm taking it for ankylosing spondylitis, as I've run out of other options and remain not eligible for antitnfs. I wouldn't say it is working miracles, but it is giving me at least as good results as taking NSAIDs at full strength was, when I was able to take them, and I'm taking virtually no painkillers now when I was previously having to take maximum daily doses of codeine to get through the working day. I think it has had some kind of effect both on pain responses, and on dampening down my autoimmune response somewhat. I don't know that its actually doing much for the underlying disease though. If I had the opportunity, I'd jump at the chance to trade in LDN for biologics as I think they have a much better chance of dealing with the disease, but as I said, that's not an option for me right now.

Have you checked out the lowdosenaltrexone.org website? Some of the information about LDN does sound a bit "miracle cure" as they suggest that it will deal with just about any autoimmune condition plus chronic fatigue, ME, etc, but I do think it potentially does help dampen down autoimmune conditions. I'm not convinced its a stand alone treatment or necessarily the best treatment though. Also, you need to be aware that once on it, you can't ever take narcotic/opiate pain killers. I could only start LDN once I had completely come off the codeine, so that was a bit of an issue and quite difficult to do when I relied on codeine to keep pain at bay. In the end I had to have a steroid bridge between coming off codeine and starting LDN. The only pain med I can take now is paracetamol (can't take NSAIDs any more), and there are the odd days when that really isn't quite enough, but I can't take codeine with the LDN so just have to put up with the pain.

You would also need to check with your doctors whether LDN was incompatible with any of your other meds. Also, not all NHS doctors will prescribe it, and I think the most reliable compounding pharmacy in the UK for it (Dicksons in Glasgow) isn't able to supply NHS England or Wales prescriptions at the usual prescription charge, so you have to pay for it. NHS Scotland prescriptions are free though.

[Hidden in reply to earthwitch]

Thanks for replying. I'm from the US, but now I'm wondering if I'll have trouble getting LDN as well. Maybe I'll have to go through Scottland to get it! I have RA/Fibro, and am fighting the biologics. I don't want to take any of them as I don't trust the outcome. I couldn't tolerate Methotrexate or Arava and am having difficulty with Azathioprine. I am trying to find something that will work with my system rather than mostly against it. I'm also afraid of the long-term side-effects from the biologics.They will be my last resort. I am starting Thunder God Vine tomorrow and hope for a better outcome than the others gave.

I hope you'll find continued relief with LDN.

Take care,

Denise

[earthwitch in reply to Hidden]

You can definitely get LDN in the US, but you need to be careful you use a really reliable compounding pharmacy. I've heard that some that don't make it up regularly don't produce such a good quality low dose formulation. I am pretty sure the lowdosenaltrexone.org website can help you find a good compounding pharmacy, and preferably one that supplies in liquid form so you can titrate the dose in very small changes.

As far as the biologics go, you might want to check out very recent research. Initially there were a lot of fears about the frequency of very severe side effects, but as the biologics are being used for longer and by more people, I believe the research is showing that there isn't nearly as much risk as was first thought, and for most of the potential problems, the risk is only very slightly higher than in the general population. Balance that against the potential benefits, and you might come to a different decision about them. As far as "working with your system" - for RA, use of biologics and understanding of the disease mechanism has made huge advances in recent years, so the biologics used in RA really do target the disease mechanism. RA research is far more advanced than for example ankylosing spondylitis research. I'm not sure about RA, but I know for AS, using biologics as a "last resort" isn't anywhere near as effective as using them quite early and aggressively in early disease, though the cost implications of that mean that in national health services like the UK they tend not to use them early. Reading up research findings can be confusing, but rather than focussing on the incidence of rare and serious side effects, concentrate on looking for stats on how much the risk is different from the normal population - from what I have read, it actually isn't that different. It is your choice though, and with the results that a lot of folk seem to be getting from LDN, that is a useful option to consider.

[Hidden in reply to earthwitch]

Thank you very much for your input. I'm sure that it will be very helpful. Take care!

[Hidden in reply to earthwitch]

Hi-

I thought that you'd be interested to know that neither my rheumy nor general practitioner will prescribe LDN as it is FDA regulated for substance abuse only. I contacted a couple of the pharmacies that were recommended and a prescription is required. Now what?

Any ideas?!

[Julie_R in reply to Hidden]

Hey, ddahl,

I checked your other posts, & see you've been going through various drugs...did you ever get on LDN? I'm taking it for MS/fibro/RA. Still titrating up, so not surprised I haven't seen much response yet, just more deterioration...I got it from a naturopath. I'm in California.

[Denzalmac in reply to earthwitch]

Hi Earthwitch, I would just like to say that I have spoken to Linda Elsegood personally as I have a lot of issues and needed pain relief but didn't want to stop my LDN. She has said that LDN stays in the body for 4 hours so 4 hrs before and 4hrs after taking ldn you can take opiate based pain relief and it will work ok x

[Hidden]

Hi Julie-

I wasn't able to get on LDN. I needed a script and my Dr. wouldn't give me one. I'm on Sulfasalazine, Methylpred and Minocycline right now. I am better than I was, but still get flare-ups. As I'm sure you know, there is always some pain/discomfort. This is b.s., but it could be worse. Hope you see good results soon.