It's excellent! I rarely need to use my cane or walker any more. Am able to do moderate physical work for up to 4 hrs at a time; shopping for 7 hrs!!

I have mixed-cause arthritis: some OA, seroneg RA, reactive arthritis. Past dxs of lupus & MCTD, though I probably more reasonably fit an undifferentiated collagen vascular disease pattern. Have Hashimoto's thyroid disease and Sjogren's symptomology. Blood results all over the place. Several bouts of autoimmune scleritis & ocular myositis. Fibromyalgia.

If you are interested in learning more about LDN, there are many internet resources. However, I recommend to you the comprehensive viewpoint of Burt Berkson, Ph.D., M.D. This article is long, but VERY worthwhile, both for the LDN content as well as for insight into what plagues the US healthcare system.

http://www.honestmedicine.com/2009/03/burt-berkson-md-phd-talks-with-honest-medicine-about-his-work-and-our-medical-system-the-interview-t.html#more

Dr. Julian Whitaker. He prescribes it for his patients at his Wellness Clinic in Orange Cty, CA and I believe he even takes it.

How much do you take?

I've thought of it for me with the OA stuff.

Are you having any side effects? I'm always concerned about that.

I'm seeing a rheumy for my knee next week (aspiration) and will ask her is she is aware of the LDN protocol.

A lot of the LDN protocol has been posted on the FM board too.

Happy to hear you are having success with it. jam

I slowly worked my way up to 4.5 mg per day, which is the amt recommended for adults over 120 lbs. Since I am very sensitive to meds, I started with 0.5 mg/day. Over about 4 mos., I bumped up another 1/2 mg every few weeks.

As for side effects, when I first started taking LDN I had a bit of sleep disturbance, occasional mild headache, occasional mild nausea. These are common when first starting LDN, though not everyone experiences them. With every new increase, I would again have some mild side effects, which for me were only about a "2" on a scale of 1 -- 10.

Some people lose weight on LDN. I actually gained a few pounds. That is not common among LDN users, but it does happen, more often among those whose weight is on the lower end. I will say, I find food tastes better when I am on LDN.

My improvement on LDN came slowly. Most often, it takes 6 mos. at "full dose" to realize the benefits that LDN provides. The benefits usually hold, as long as the LDN is continued.

One big benefit for me was my OA knees. In 1995 I was recommended to have total knee replacement, both knees. I held off, but prior to the LDN I was in regular misery with the knees, esp. at the end of the day. I couldn't be "up" walking/standing for more than 1 hr./day without serious swelling. But lately I've been moderately active, standing, walking, bending etc. several times/wk for about 4 hrs. at a time. Plus other general housekeeping activ on top of that. When I go for a walk with my DH, he often can't keep up with me now -- and has commented. We both think it's the LDN, as I haven't had a period of such improved knee function over the past 18 yrs. And several of my neighbors have asked me if I've had the knees "done" -- they've seen me struggle slowly with my cane so often over the years.

Not to say things are perfect -- I still can't kneel at all, even for a moment, even on a cushioned surface without pain. But I can bend & flex my knees much better than I could before the LDN.

My other benefit was my reactive arthritis. I still get mini-flares when exposed to bugs, but they are so minor compared to my former incapacitations which would last for a week or longer.

I've always had a number of strange (but mild) rashes on my body. These have pretty much disappeared. My face color is much better than it had been. I had gotten kind of a dusky look, but now I am back to my usual fair complexion.

Good luck with your rheumie visit. You've got a gem if he knows anything about it, beyond the "traditional" use for opiate addiction (at much higher LDN doses). My own doc won't rx the LDN, though in principle he is happy with my progress, which he attributes to my "being happier and more energetic" -- which I would say are my MAIN side effects from the LDN.

One thing I forgot to point out -- LDN doesn't work if one is taking opiate based medication. Nor does it work well in combination with immune system modifiers of the sort most rheumies are now RXing.

Best wishes.

SnooZQ,
what is LDN, please?
thanks,
sedona

LDN is an acronym for Low Dose Naltrexone.

Naltrexone is a drug that was developed several decades ago to treat opiate addiction. At a dose of 50 mg./day, Naltrexone blocks opiate receptors in the brain. Therefore when an addict takes naltrexone, he/she won't experience a high. As a drug to treat addiction, Naltrexone achieved only modest success. There were some side effects at the 50 mg. dose, and of course, no high.

LDN is Naltrexone taken at a fraction (1/11 th) of the dose used to treat addiction. When this tiny dose is taken around 10 p.m., a message is sent to the brain to produce more endorphins (the brain's natural "opiates"). Timing is important, because endorphin production in the brain peaks at 2 - 4 a.m.

Meanwhile, studies had shown that many people with chronic disease, and especially those with autoimmune-based disease, had very low levels of natural endorphins in their bloodstream -- if I recall correctly, typically 20% of what the average healthy person has. Endorphins are chemicals produced in our bodies that have significant immune-modulating properties. They're often simplistically billed as "feel goods, but they do have multiple, important functions beyond mood-boosting.

A physician named Bihari pioneered the usage of LDN, starting with MS patients. The success rate of using LDN for MS is around 85%. Side effects are low, and this is a very inexpensive treatment as well. Use of LDN was found to increase the body's production of endorphins in MS, often to 80% of normal. It is believed that this endorphin increase is responsible for the improvements seen in the disease process.

There is a fair bit of positive research on the use of LDN for MS as well as for Crohn's disease. On the whole, however, scientific and clinical research is dragging due to lack of funding. LDN is not a drug that could make billions for pharma, which sponsors most drug research.

If you oogle LDN, you will see many websites devoted to its use. There are many, many so-called anecdotal reports of the helpfulness, effectiveness of LDN in a variety of autoimmune based diseases, in neurological diseases, and even in cancer.

But as a starting point, I recommend doing a copy and paste of the article URL I mentioned above. It's a bit long, but very readable, and it will give you great insight into the possibilities of LDN.

Best wishes.

and then realized it wasn't for me. I can still bend my knees, still walk pretty good, but less.

I do get my right knee drained and when that is done I feel so much better for a while. Flu id accumulates there and my one med doc it's all from the bursa blah blah. All arthritis connected.

The MSM I've been taking for almost 3 months has made a respectable difference in the knee and overall.

I'll still mention it to her. Did you have the knee replacement afterall?

Also, I remember checking around on where to buy the LDN, not all pharms carry it. There was a challenge to it all from point of view.

Hi SnooZQ:

Thanks for sharing about the LDN Therapy. I will be seeing my holistic Doc sometime after the first week of April. I am now off of the MTX and the Enbrel which makes it easier to try this therapy. My Rheumy has given me permission to go ahead and try the LDN. She will not prescribe it (I can guess why) but will allow my holistic Doc to do this. I had talked to Doc about this a year ago about trying this. We decided to hold off until I got completely off of the MTX, at least.

LDN also benefits some people with thyroid disease. So I will see how it goes for me.

Since I am also sensitive to many meds/vitamins/supplements, I will also ask that the RX start out at 0.5 mg per capsule.

Take care... :-)

I used to get pretty bad "baker's cysts" behind both of my knees. That's one type of fluid accumulation that people w/knee OA can get & can have drained.

Haven't had the cysts since the LDN kicked in. Yay!

Nope, never did have those knee replacements done. It's on hold, indefinitely ... I'm doing pretty well!

It's great that the MSM has worked out so well for you. I do use a bit of it, and it is good stuff, just that I can't tolerate more than 500 mg/day orally. I use more of it in foot baths than anything else. It does help my foot tendinitis.

You are correct about LDN -- it is usually purchased from a compounding pharmacy. Most pharmacies carry the regular Naltrexone, they just don't compound it down.

Yes, do start at the lowest possible dosage, especially if you have thyroid problems. Some people who are hypothyroid find that the LDN helps their thyroid function. Some have cut down on their T meds. Others have had hyper T symptoms from too much LDN too quickly.

You have a gem of a Rheumy if he/she has given blessing to try LDN. Most MDs balk.

Good luck to you.

just wonder if I'm missing this for the OA I deal with. The rheumy I saw recently didn't know about LDN so you have to find the "right" doc to work with.

right knee replacement; I really don't want to go there. Perhaps it's time for me to try the LDN. What do you think at this point. Do you still speak highly of LDN? Everything I'm taking helps, but knee seems to be getting worse. jam

[This Message was Edited on 10/05/2009]

I'm very sorry to hear about the ongoing problem with your knee.

I was recommended for TKR on both knees, in '95, by both a physiatrist & orthopedic surgeon. At that time I was only 41 yo. Wanted to hold off, since those replacements don't last forever. For many yrs., I used only a combo of physio, supps, the topical NSAID, and changing/eliminating activities. Every eve by about 8:30 I'm tipped back in a zero-gravity chair, which helps to drain the fluid accumulation from the knees.

I also have to get new shoes every 3 mos. -- the slightest bit of wear on the heel & I start swelling like crazy. My OA started very early due to some orthopedic problems (in feet, tibias & femurs) that I was born with.

Several yrs. ago I swore I needed to have it done. Then discovered my nightshade prob & there was enough improvement to hold off. However things were getting pretty bad again before the LDN -- I was regularly getting Baker's cysts with minimal activity & my IM doc wanted to start regular cortisone injections into the knees. I was to the point where I could not be on my feet more than 1.5 hrs/day without severe knee problems.

I never pursued the cortisone shots because, from what I understand, doing that on a regular basis has potential to weaken the support structures (muscles, tendons & ligaments) of the knee that are needed both for everyday function as well as for successful recovery from TKR.

I do feel that LDN has helped a lot of things. I know I am much more active than before I went on it & getting fewer flareups of those cysts behind the knee. I still swell up some every day, but it seems to a lesser degree. It seems my knee is more responsive to the topical NSAID -- when I need to use it (maybe one flare per month, one knee or the other) I'm finding one application does the trick, rather than 2 or 3 apps spread out over several days which was more typical of pre-LDN.

Can't say whether LDN will help you or not, Jam. But I've been pretty impressed.

Realistically, I'm not sure whether LDN will help me avoid TKR entirely. My goal is to hold off on the TKRs to at least 60 yo (I'm 55). Because of my "involved" OA with bone structures that never did develop, etc., I've been told that my surgeries will be somewhat more complex than typical TKRs, and that I shouldn't leave it "too long."

If you decide to try the LDN, you'd probably know within about 4 mos. of being on the target dose (usually around 4 mg), whether you're getting enough help for your knees, or not.

One thing I do know, it's very impt to have your bone density ckd, both tibias & femurs, prior to signing on for TKR. A friend of mine had only a heel test for bone density, but one of her replacements failed, and her doc said it was because one leg had poorer bone density than the other. She was in worse pain overall than before the operations, even considering the improved knee. In retrospect, she wished she'd never had the operation.

Best wishes to you. These are tough decisions.

[This Message was Edited on 10/06/2009]

everything and last night I was on LDN sites. I sent my "integrative" doc an email to ask if she knew about LDN therapy. Will keep on top of that. Also, have a list of compounding pharms.

I've read good and and not so good reports on LDN...so yes a tough decision. I just DREAD the thought of a TKR....I saw an ortho last year and he did SynVisc injections and I just paid off my co pay....they did ZIP.

I'm wearing my knee "glove" in the house now to keep the knee compressed....oh brother. And, of course, always using my homeopathic gels. Thanks again and talk later.

The TKR is a hard recovery, but I've heard once recovered many are so happy. I'm 71 and my activities are so much less these days. jam

make up the dilution and now looking to get a script for Naltrexone and make up the LDN....this just makes so much more sense since it can be costly. I just called my integrative doc and asked if she would work with LDN...so I'll wait to hear back. Otherwise I have a sports med doc who I believe will work with me on this. Both these docs know how much stiffness I deal with and how much I don't want any surgeries. I'm on my way.

Found others who take LDN too. Thanks Snoozq...jam

PS: Just got a call back from a doc in a compounding pharm that I called to pick his brain. He claims that starting with less than 3 mg does not help anything.

He claims to be getting more and more calls for LDN and hearing great succcess stories.

Correction: I will start on 1.5 mg or less once I get on it, re: thyroid issues.

[This Message was Edited on 10/07/2009]

is willing to help with the LDN protocol. He's been working with me for 2 yrs now with prolotherapy injections, trigger point injections, Traumeel (homeopathic) injections in my shoulder, knee, back, hip and foot. Some have helped and he said he would do all he could to keep me a surgery; knee replacement, etc. We shall see. I see him next week and he may drain my knee as it looks like fluid has collected and we'll talk LDN and he'll give me a script.

I sent him info on LDN as he knew nothing about it,,,which many docs don't.

Interesting that you get Traumeel INJECTED ??? Never heard of that before. I've tried samples of the Traumeel topical gel/cream -- didn't do a thing for me.

I use 2 - 3 hrs of "postural drainage" for my knees every eve, getting the knees higher than my heart with the zero grav chair (you don't need the special chair, but it's really comfy). I do pee out quite a lot after doing that, no mystery where the fluid is coming from. I don't have fluid accumulating anywhere else, it's not a kidney thing.

Something else that helps my knees is using a "fatigue mat" in the kitchen when I have to stand for any length of time. My knees are more aggravated later in the day, & that's when I'm doing dinner prep, all from scratch & I'm not speedy. So that gel mat from BBB has really come in handy.

I'm not fond of getting my knees drained by the doc, but there's a time & a place for everything.

Good luck w/ your LDN quest. It's true, you may not notice too much benefit at first when you start on the lower dose, however you're also less likely to have the sleep disturbance issues & less probability of starting to run hyper.

There are a couple other things I've learned about LDN dosing. Don't take your calcium within 1.5 hrs of the LDN. For some people, a lot of sugar in the diet with LDN can aggravate yeast issues (well sugar does anyway, but for some reason the LDN can increase that factor).

Autistic kids tend to do better with LDN when they're on GFCF diet -- probably because some of them don't fully digest gluten & casein, which leads to the morphine-like compounds glutomorphin & casomorphin, which can cross the blood brain barrier & bind to opiate receptors. I'm on a very strict GF diet myself, & am also dairy-free but occasionally transgress. I do start getting brain foggy on the LDN when I do a little dairy, or eat more sugar than usual.

Don't know if any of the above will be useful to you, but good luck with whatever route you decide to pursue.

[This Message was Edited on 10/08/2009]

I take my calcium mid day with my Vit D3 and don't eat much sugar stuff at all..I'm so diligent on that one. Sugar is deadly for us PERIOD. And gluten I'm pretty much off it, but do slide when I have a social thing.

My knees are not swollen per se, but docs have gotten fluids from one in the last couple years. I have what I call "fatty pads" on the inside of the knees but docs won't do anything there.

How long have you bee on LDN now and are you up to 4.5mg? Thanks again...jam


Oh on the Traumeel injections, my sports med doc did one set of those in my right knee and it didn't do anything to speak of. I understand Europe has been doing those injections for a while now and they've finally gotten to the US. The Traumeel gel is not that effective either, but does help.

My favorite homeopathic gel is the Sports Gel for Trauma by B&T. This one helps the most and I never run out of this product.

I'm trying not to be nervous about the LDN, but I guess it can complicate things too. I shall see.

[This Message was Edited on 10/08/2009]

That's when I started on LDN, at 0.5 mg. It took a period of months for me to get up to 4.0 mg. I've spent a while at 4.5, but now think that 4.0 is the right dose for me. I get a little zoned out at 4.5 mg.

I was pretty nervous starting LDN, too, cause I've reacted badly to meds in past & sometimes even to supps. But by starting at a low dose, I convinced myself I could give it a try. And it's worked. Can't tell you how pleased I am when acquaintances comment about how well I'm walking! And I love being able to do volunteer work & gardening once again.

when I talked to my sports med doc last night, I was using you as an example of how you are now walking better, etc.

I do pendulum dowsing and I didn't ask my pendulum about LDN yet but I think I will and see what it tells me, yea or na... I use it for a lot of supps I try and "kinda" trust it.

Well it was pretty amazing on the dowsing and I did a strong YES to take it for my arthritic joints and that I would NOT have side effects and it would NOT affect my sleep. When I asked what dose I should start with I got a strong 1.5mg...

[This Message was Edited on 10/08/2009]

to start off with at 0.5 mg instead of LDN. I'm afraid if I start out at 1.5 mg, it may be too much for me. I have alot of reactions to meds/supplements too.

{{{hugs}}}

Yes, starting on the LDN at .5mg. Made up my solution this morning and it's in the refrig waiting...I'm anxious!!! Hope I sleep good tonight as I sleep so well every night. This has taken me about a year to do this. jam