Positive Clinical Trial Results For Low Dose Naltrexone In The Treatment Of Autoimmune Disease

[Annaliese]

I just thought i'd let everyone know im continuing to do well on low dose naltrexone. I LOVE this drug. I generally feel happier and more well. Not sure if my orthostatic tolerance has changed that much but my chest is less sore. Bowels are definitely MUCH better and i seem to achieve more every day.

[issie]

So happy, are you up to a higher dose yet?

Issie

[Annaliese]

Still on 2mg. Thought id got up to 3 mg in about 2 weeks. The best benefit, i reckon, is the antidepressant effect. For me, its much better than avanza and doesnt send my cholesterol high! I think my joints are less sore too now that i think about it.

[issie]

WOW, wonderful.

Issie

[Annaliese]

Thanks Issie. Im stoked about it. It's the only med ive tried that doesnt have negative side effects ( apart from the first few weeks when it's hard to sleep).

[issie]

How long did it take before you could sleep again and did it help your pain levels? That's one thing I could use help with pain and sleep.

Issie

[Annaliese]

Yes it helps with pain levels. You can avoid the sleeping problems by starting at a low dose and tapering up. You need to be on the med a few months before you notice improvements as benefits seem to accumulate. First i noticed i was happier then i noticed my jaw wasnt as sore etc etc. Had the best day yesterday since i got ill. Naltrexone hasnt ever made me sleep better though.

[ramakentesh]

Bump - an interesting thread.

[issie]

I got RX'd LDN - and tried it two times. It is too high of a dose for me. It caused severe muscle cramping. Issie

[kitt]

LDN is used as an immune modulator in CFS. The reason it's used is to 'try' and shift the immune system from being T2 dominant to T1 dominant.

If you want to know more about T2 to T1 shifters, here's a link about it written by Dr. Cheney. He was my doctor for over 15 years. Lots and lots more to know about T1 and T2, but here's a primer.

http://www.anapsid.org/cnd/diagnosis/cheneyis.html

LDN is also used by MS patients.

The 'guru' of LDN compounding is Skip at Skips Pharmacy in Coral Gables, He ships. (LDN needs to be made by a compounding pharmacy)

I was prescribed LDN some time ago by a CFS immunologist.

I started at a fraction of the dose, and had a horrible reaction. The reaction was both neurologic and immune based.

A few people with CFS do well with LDN, some get no response, and fewer have a dramatic negative event like I did. It kicked up a major neurologic and immunologic disease having nothing to do with pots. I had pots when it was dx., but in no way was it dx for pots or suggested to help pots. (The same doctor who dx my pots prescribed LDN for my CFS.)

So if you get a doctor to prescribe this I would recommend starting at a very small dose and would recommend having it compounded by Skips Pharmacy.

Someone said, 'it can't hurt to try it'... As with most medications there can be risk.

[issie]

Thanks for the link Kitt --very interesting.

Issie

[martiz]

I make my own from 50mg Naltrexone tablets. I mix with 50ml of water and take 1ml per 1mg.

Easy peasy and about $16 per month not $50 or more.

I order it from overseas.

Marti

[issie]

Marti,

Do you have any problems with LDN?

Issie

[Zap]

Hmm, interesting that the LDN thread surfaces again. Given my response to steroids, I am tempted to try it (if I can get a doctor to issue the Rx) - since I suspect that I have autoimmune things at play.

It is supposed to be helpful with hypotension, which has been plaguing me a lot lately.

[ramakentesh]

ive got four POTSies that report some improvement. Worth a try but as is suggested may potentially entail some risk.

[ramakentesh]

Zap I see that your taking Dopa Bean extract. Do you realise that is a strong duiretic?

[martiz]

Sorry, Issie,

I didn't see this post. I will write here some of what I have written to you backchannel.

First, Naltrexone is not of the sulfur family. Here is the link to drugs.com on naltrexone:

http://www.drugs.com/pro/naltrexone.htmlhttp://www.drugs.com/pro/naltrexone.html

"Naltrexone hydrochloride is a white, crystalline compound. The hydrochloride salt is soluble in water to the extent of about 100 mg/mL. Each tablet, for oral administration, contains 50 mg of Naltrexone hydrochloride. In addition, each tablet contains the following inactive ingredients: colloidal silicon dioxide, crospovidone, hydroxypropyl methylcellulose, lactose monohydrate, magnesium stearate, microcrystalline cellulose, polyethylene glycol, polysorbate 80, synthetic red iron oxide, synthetic yellow iron oxide and titanium dioxide."

Naltrexone does not help your body make more endorphins. It blocks the endorphin receptors in your brain so that in the middle of the night, when your brain produces it's endorphins (a fixed amount), they flow past the endorphin receptors and go into the body to heal and do it's thing. So naltrexone is able to help the body's pain, immune function and healing in this way.

There are several pharmacies that don't compound it correctly - adding in calcium carbonate as the filler which blocks the drug. Some add fillers that people cannot tolerate or they use slow release naltrexone which doesn't produce the spike needed during the night.

You can read more here, about sources to obtain LDN, clinical trials, etc.

http://www.lowdosenaltrexone.org/

I don't have a doc working with me on this so I purchase my tablets 50mg, from India and I mix with 50ml of water. Then I take 4.5ml (equal to 4.5mg of naltrexone) every night at 11pm. I have done this for 3 or 4 years now.

Naltrexone MUST be ramped up slowly - you don't start taking 4.5 on the first night! I started with 0.5mg and ramped up to 4.5 within 7 or 8 weeks. There are few side effects for this drug, compared to other drugs - please read the website. As stated, all drugs, supplements and even herbs! have side effects but this medication has fewer than most. That being said, it may not work for you.

I first started LDN to handle my pain and as long as I don't overdo, I do not need additional pain meds or muscle relaxers. I have experimented and I am one of the lucky ones and I can take tramadol without ill effect on the days that I do overdo it. My sleep cycle is better (I can fall asleep easier and stay asleep longer) as well as better immunity. I tested this earlier this year and my health plummeted (not right away but within weeks).

Marti

[issie]

Thanks so much Marti for the info (and the e-mails) . My doc is new with POTS and MCAS and RX'd me 4.5 to start. When I did that it was not good. But still having some issues with trying to take a lower dose. Not sure if it's MCAS related or what.

So hurting really bad and having some seeminly MCAS related issues. But, plan to take it for a few days and see how it goes. Will call the pharmacy and make sure I got the right kind and not mixed with the wrong fillers.

Thanks for the info. I too couldn't find where I thought it was in the sulfa family ---last night when we were talking. So, not sure where I saw that. So, not thinking that was it. I did see where it has been mixed along with a sulfa drug for another use. Maybe that was where my confusion came in. Thanks for the clarification!

I guess I need to call the pharmacy and see what is what.

Thanks again!

Issie

[Zap]

Zap I see that your taking Dopa Bean extract. Do you realise that is a strong duiretic?

Rama,

I actually wasn't aware of that at the time - but I stopped taking it as it started making things worse instead of better. Thought it was helping a bit at first, but I'm prone to things doing an about-face on me and causing more trouble. I've given a lot of stuff I was trying the heave-ho, and honestly am probably about the same or maybe slightly better on average, which isn't saying a lot.

Still getting the dizziness and headaches often enough, coupled with strange pains (shoulder seems to be a more recent one). I'm tempted to ask my autonomic neuro what else I could try, possibly including LDN. Sick of having no improvements to speak of for such a long time, aside a few things I've discovered on my own.

[issie]

I'm into my second week and doing a little better with it. Still not sleeping the best, but the pain is better. I notice after I take the med - the pain intensifies - but, each night it is a little less. In the day time - my pain seems to be some better. I'm being able to exercise a little bit too and doing okay ---so far.

I think it will take a few weeks for my body to re-program and with time the LDN is supposed to show more improvements. So, we will see how it goes. I'm thinking it is going to be okay and hope that I get the results that others have.

Issie

[ramakentesh]

Zap I see that your taking Dopa Bean extract. Do you realise that is a strong duiretic?

Rama,

I actually wasn't aware of that at the time - but I stopped taking it as it started making things worse instead of better. Thought it was helping a bit at first, but I'm prone to things doing an about-face on me and causing more trouble. I've given a lot of stuff I was trying the heave-ho, and honestly am probably about the same or maybe slightly better on average, which isn't saying a lot.

Still getting the dizziness and headaches often enough, coupled with strange pains (shoulder seems to be a more recent one). I'm tempted to ask my autonomic neuro what else I could try, possibly including LDN. Sick of having no improvements to speak of for such a long time, aside a few things I've discovered on my own.

Any pains in your lower back or buttocks?

[Zap]

Funny that you ask... One of the most common pains that I get is in my lower back (lumbar region)......

Can't say that I've really had pains in the buttocks (aside from my problems and unhelpful doctors, purely in the metaphorical sense, haha)

So, of course I'm curious to know what you're thinking. I've been worked up for all sorts of autoimmune stuff, with no positives thus far.

[ramakentesh]

Ankylosing Spondylitis causes migratory pain - often in the lower back, sacroiliac joints, shoulders, often in the tendons between these locations. Blood test for HLA-B27 is the indicator.

[ramakentesh]

I also get TMJ from Ank Spond.

[Zap]

I was suspecting that might be where you were going - funny thing is I had pain in my knee for a while, too. The foot where the autonomic neuro noticed reduced sensation, the heel is/was a bit numb feeling. I get the TMJ on and off over time, when it happens it drives me nuts. I've definitely had what I'd classify as migratory pain for a while now. Is there an early/mild phase before things can be detected via testing?

I am curious to wonder how accurate some of the tests are - my primary happily obliged to run a Rheumy panel for me. I had HLA-B27, ESR, Cyclic Citrul Peptide AB (IgG), and Rheumatic Factor tests run. All were normal / negative. When everything comes back negative, it makes you wonder crazy things, like if they are not testing the right samples. In all seriousness, I do wonder how accurate the tests are, though. Very, very few things have ever been tested more than once.

One thing I'm also curious to know, is if an immunologist will ever Dx autoimmunity of unknown cause. I would hope that, at some point, someone will be willing to attempt treatment so I can possibly return to a more normal lifestyle, even if it isn't perfect. I've had what seems like so little tried in the two years that I've been chasing all of this. I know I can do better.

And speaking of migratory pain, I've got some random aches in my leg now.