naltrexone and Rheumatoid

[jaydee]

Does anyone here have any info on naltrexone and RA? Any success?

Thanks
Jaydee

[Marie]

Hi, Jaydee,

Funny, naltrexone is on my mind right now, too. Just 10 minutes ago I used the search function w/ “naltrexone” and found lots of great stuff.  I gather that it seems to help some, but not all, but that it is generally well tolerated.  Some have vivid dreams and/or have a hard time sleeping, but that seems to pass.  I've never taken it.

Marie

[patchoulee]

I took it for 13 months on several differant doses on a trial for a Dr it did nothing for me at all. My dry eye might have been a little better but not enough to mention. There is a yahoo group and a message board that Brenda runs she has been taking it for paralzying MS for 5+ years and is in remission.  I know people with neurological diseases have great success with it.

Angela

[angelorenda]

I have read much about how people with candida do not get that good effect. As i understood it, MS could be viral so maybe that is why?

[vinny]

I have some form of Psoriatic Arthritis or Reactive Arthritis with the initial attack starting in Dec 2007. After going through the Prednisone/Methotrexate start I settled on AP, using Minocycline and Diclofenac daily. On 2/24/09, I added Low Dose Naltrexone. I did not notice any particular effect for several weeks, but now appear to be headed toward remission. I have been off Minocycline and Diclofenac for 2 weeks and have not had any increase in pain parameters. LDN is the only prescription that I am currently taking. My thought process is, weaken the cell wall deficient Mycoplasma bacteria with the Minocycline and then try to rebuild the immune system to pick up the fight. I buy 50mg Naltrexone pills and dilute in 50ml of water and take 4.5ml at 9pm every night. I take numerous herbal anti-inflammatories, herbal antibiotics and digestive enzymes. The yeast “spit test” still indicates that I have a high level of yeast, but don't have any symptoms that I can say comes from yeast.

vinny

Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

[jfr]

I'm an LDN success story, and I highly recommend using it along with AP.  I believe it will enhance the effectiveness of AP.

I started with LDN in December of 2007 and got an almost immediate reduction in pain (from about a 9 out of 10 at night, to a 2/10).  I was able to go off all my other medications (Celebrex, Plaquenil).  It worked incredibly well for about six weeks, and then I started flaring again.  It would have been tempting to say it just wasn't working anymore, but I wasn't ready to give up after getting so much initial relief.  When I researched how LDN was supposed to work on rheumatic diseases, it led me to look at the possibility of a bacterial cause for my RA, and this in turn led me to this website and to AP.  As far as I can tell, my theory has been borne out by my own experience.

I believe that my initial positive reaction to the LDN was because the increased endorphin levels impacted the pain.  Then, as time went on and the extra endorphins began to really boost my immune system, my immune system started to take on the bacteria and cause the flares.  I realized that rather than give up on LDN, I should start AP, and that's what I did.  I've been on AP for about a year, beginning with a week of clindy IVs and then going on Mino.  It took about 6 months, and I flared quite a bit during that time, but after a while I realized I was doing much better, and the improvements continued until I was virtually symptom free. 

I took a break from the Mino a few months ago to go on another oral antibiotic (can't remember now which one) for 6 weeks after getting a tick bite and experiencing a return of symptoms.  I'm back on mino now, and though I'm not quite as good as I was before the bite, I'm back at a pretty comfortable level and I trust I'll continue to improve.

I sincerely doubt I would have done as well without the LDN.  I believe in it.  In fact, since I had such success, other family members tried it.  My husband is on it (for chronic knee pain that resisted all other treatment but is now resolved), my son is on it (for autism), and my mom is on it (for allergies).  We are all feeling the benefits.  The doctor who originally prescribed it for me told me he's been amazed to see that it often helps people with conditions that are not on the list of things that are known to benefit from LDN. 

I recommend giving it a try, and doing that with the knowledge that you might not feel immediate results.  The folks over at the LDN yahoo discussion group will tell you that you need to give it at least 9 months to a year before you can assess whether it's working or not.

[tbird2340]

Here is a good video about LDN:

http://www.youtube.com/watch?v=FRI5f69N2eo

Are there any known side effects for using LDN (short term and or long term)?

[jfr]

Some people (I was one of them) have difficulty sleeping for a while after starting LDN.  Mine lasted longer than most (like about a month) but it eventually went away completely and I sleep really well now.  Some people take it during the day instead of at night to avoid this, but the effectiveness of daytime dosing is still controversial. 

One way to avoid some of this is to start at a low does, like 1.5mg, and then work your way up.  The dosing can be very individual. I had to play around with it for a while before discovering that 3.5mg is my ideal dose.  At 4.5mg (considered the ideal dose for most people) I had dizziness, headaches and heart palpitations.  At 3.5 I'm totally fine.

As far as I know, this drug is as benign as they come.  All it's doing is helping people with low endorphin levels (which is anyone with a rheumatic disease, among others) and causing the body to produce a more normal amount.  The one side effect I do hear a lot about is that people feel BETTER – better mood, better sense of wellbeing, etc.  Kind of like you would feel if you did a ton of exercise and increased your endorphin levels that way.

Edit:  Forgot to mention the vivid dreams.  Yes, I did have a lot of those at the beginning.  They were kind of fun, actually. Some people have nightmares, but my guess is that's more about whatever they've got going on in their heads than the LDN.  I didn't have any nightmares – just feature-length adventure movies.  I think the LDN just makes you able to remember your dreams better because there's some disruption of the sleep cycle. You probably have the same dreams you always had.

[PhilC]

Just thought I should post a warning about LDN.  While researching it, I came across several reports of people with RA who got much worse after starting on LDN.  Based on those reports, my personal opinion is that it would probably be best not to start on LDN until one has been on the AP for awhile and given the antibiotic(s) a chance to bring the bacteria and inflammation under control.  That way, when the LDN is eventually added, the herxing caused by the LDN will (hopefully) be easier to deal with.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lynnie_sydney]

Hi Phil. From your posts, it seems that you have done a great deal of research, which tends to bode well for those of us who are determined to be active participants on our path to greater wellbeing. May I ask what is your diagnosis and what treatment are you currently on? Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[PhilC]

Hi Lynnie,

I am not sure what I have, other than I know that it is obviously an inflammatory disease of some kind, possibly a combination of more than one.  I was in graduate school when I first saw a doctor about my joint and muscle pains.  My doctor told me that she was reluctant to declare a diagnosis of arthritis “because if I do, you may never be able to get health insurance.”  She probably shouldn't have told me that because it was a bit of a shock to me, and it was one of the reasons that I declined her offer to refer me to a rheumatologist– I didn't want anyone sticking that RA label on me.

Now, since someone else just asked me a similar question, to save time typing I am going to just paste in what I told her:

“As for me, I am not 100% sure that I have RA.  My symptoms matched RA better than anything else, but my blood tests were close to normal.  That was in 1989.  A doctor prescribed 600 mg ibuprofen for me, but it barely made a dent in my pain.  Fortunately, before I got sick I had heard that people with arthritis should avoid certain foods, so I started changing my diet right away.  That made a VERY BIG difference.  I also took a bunch of vitamins and some herbs.  Because of those changes, I only needed to take 200 mg of ibuprofen twice a day.  After several years, I was able to stop taking the ibuprofen completely.

Currently I am taking doxycycline, one of the antibiotics that is used in the AP.  I am not taking it for arthritis, though; I am just using the lower dose that the AP uses so I can keep the side effects to a minimum.”

Unfortunately, things seem to be taking a turn for the worst.  Although my joint pain has been well under control for many years now, lately I've been having some problems with back (spine) and chest (ribcage) pain.  So it seems possible that I may have AS as well, or perhaps I am on the verge of developing it. 🙁

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lynnie_sydney]

Phil, interesting story, though am so sorry things have taken a turn for the worse.

I am not taking it for arthritis, though; I am just using the lower dose that the AP uses[/color”>

[/color]
Not sure that I understand that statement. Doxy is not listed as an arthritis drug in terms of rheumatology and there is no specific “AP dose”, so I am a little confused. Much depends on the doctor and the approach. Some protocols of mino for instance (eg Harvard) can entail daily dosing at 200mg, for instance.

Anyway, Phil, more importantly, I am wondering what medical support you have. If you dont consult with one, it might be time to consider an AP doctor. If you let us know where you live, Maz or Kim will forward you the list for your State. BTW, if you believe AS may be an issue, it is well worth reading John – DragonSlayer's – story in Personal History and Progress section. He has been in remission from it for 10 years. It is very detailed, involves a starch-free diet to a great extent and his story will be included in Professor Ebringer's new book. Here is the link: http://www.rbfbb.org/view_topic.php?id=872&forum_id=3 

John is still actively posting on http://www.rheumatic.org Board I notice, so you could also consider contacting him. I wish you the best – and some answers – soon. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[linda]

This is a rx drug, right? I'm so close to the edge on pain right now that I'm very tempted to ask the new rheumy for vicodin – and if you know me you know how I feel about vicodin. LDN sounds like a better alternative, is it addictive at that low dose? and are rheumies rxing this, or do I need to see an AP doc?

[jfr]

This is an rx drug.  Most rheumies and AP docs will not know what you're talking about if you ask for LDN.  You owe it to yourself to get educated about it before you go looking for it, as often the patient knows more than the doctor when it comes to stuff like this.  Go to

 lowdosenaltrexone.org

and start reading about LDN. 

To answer your questions:  No, it's not addictive. It's an anti-addiction drug when used in the higher doses.  It would actually counteract any opiate in your system, so Vicodin would not work with it.  It increases your endorphin levels and can really help with the pain.  However, it's crucial you have it compounded by a pharmacy that knows what it's doing. There's a list on the website I just gave you.  There's also a yahoo group you can subscribe to from the website where you can ask for a list of doctors who will prescribe LDN in your area.  Don't bother trying to go to a regular doc and asking for it. They won't know what you're talking about.  They confuse it with other drugs, or they tell patients it's a narcotic when it's just the opposite.

[Todd WI]

I tried LDN for several months last year.  I really didn't notice much except for some very vivid dreams. 

A couple of months ago I decided to give it another go.  At the time I had been on AP for over a year and was doing pretty well, but I was (and still am) searching for perfection, so I added LDN back into the mix.  I took LDN for about a week and it was like I had been hit by the proverbial truck.  I didn't take one or two steps back, I took them all back and then some.  It was the first time while on AP that I had to use my crutches.  It was the worst flare (herx?) both in terms of severity and length that I've experienced since starting AP.  I stopped the LDN and the flare started subsiding.  I'm back to doing well again, but still not perfect.

The obvious question is: was it a herx?  It could have been, but personally, I don't think it was.  I say that based on the severity and the length of the flare and the fact that after it I didn't return to a better condition than before the flare.  So for me, LDN is definitely off the table.

Todd

[Author]

Posts