Low dose Naltrexone (Ldn)

[Peterborough67]

Was diagnosed with RA in Feb, so far no medication regime helpful. Has anyone experience of taking Low Dose Naltrexone which is proving very successful for MS and having some success with other autoimmune diseases?

[Simba1992]

Have been taking for two years now. Together with diatary modifications, supplements and excersize have been able to control infammation and swelling. Still need aspirin once a day.

[petersgainey in reply to Simba1992]

Thankyou

[nomoreheels]

Hiya Peterborough67, welcome. Sorry to hear you've been diagnosed. It really is very early days for you, I would think even if your first treatment/s haven't shown significant improvement yet being only 4 months since diagnosis there are options for your Rheumy to prescribe yet. Unfortunately DMARDs can take some time before they reach their potential though we usually notice subtle differences before. Which ones have you been prescribed so far?

Unfortunately LDN isn't licensed for RD so it's unlikely until you've exhausted the recommended DMARDs so I wouldn't expect your Rheumy to prescribe off-license. No harm in asking him/her of course though. Being newly diagnosed I'd be hesitant at seeking out a supplier without the backup of the Rheumy, it's important you get the disease under control as quickly as possible & I can't emphasise enough how important monitoring is in attempting to do so.

There are things you can do to help too, a good varied diet helps, as does exercise. Ask what would help for your specific needs.

Do bear in mind as well, your Rheumy has your interests at heart so if your current regime isn't working well enough or even at all he/she will have options for you. Speak with your Rheumy, I'm sure something can be offered without considering going off-license yet.

[petersgainey in reply to nomoreheels]

Thank you for your detailed reply. I will try to be patient but it is difficult when things are getting worse with such limited movement. I am interested in LDN as it was like a miracle drug for a friend with MS and the disease has remained static for 2 years.

Once again _ thank you

[Simba1992 in reply to petersgainey]

LDN has helped quite a few with RA. If you haven't been on the website yet I do recommend you to do so. You can find all the information you need😊👍🏻

ldnresearchtrust.org

[nomoreheels in reply to petersgainey]

We know how it feels. Unfortunately it's the nature of the beast & whilst it can seem an age when we want immediate results it's better to trust in your Rheumy with the proven meds he prescribes.

I really would keep your options open & not rush into LDN as you have many med options available to you. I may be of a different mind if you'd failed on everything, including anti-TNF's & biologics but before it's proved effective, by that I mean from clinical trials specifically for use in RD then I think you're better under the care of a Rheumatologist. According to the link given above not one trial in autoimmune diseases is for RD & I don't know of any to date which may be listed elsewhere. Whilst it's been successful in those with MS for muscle spasm it is a different condition & again also only available off-license. I can understand how I must be seeming a wet blanket especially as you've seen positive results with your friend but MS is a neurological disease & not related to RD.

At the end of the day it's your decision to make & I wish you well. If you need any help re your RD meds we're here.

[Simba1992 in reply to nomoreheels]

There is a great number of good results for RA with LDN, as can be read and listened to in interviews with prominant doctors who have been treating their patients with LDN for decades. All this can be found on LDN Trust website. What is also important to keep in mind that you can try LDN alongside RA meds without any ill effects.

[nomoreheels in reply to Simba1992]

Good results are subjective Simba, controlled trials aren't so speaking personally I wouldn't take a med that the results of which wouldn't be overseen by my Rheumy, I'd only have myself to blame if I incurred joint damage or organ damage. The info is in the link you gave, this is the page ldnresearchtrust.org/Clinic.... You'll see it includes trials in MS, yet it's still not prescribed for it, except off-license of course. I'd question why. I wouldn't think it's low cost that's for sure with the NHS scrambling for every saving! Or given MTX was intitially a chemo med before a DMARD & how inexpensive that is. I've not seen it mentioned anywhere LDN can cause some rotten side effects either but I guess you only know that once it's been prescribed & is taken!

[Simba1992 in reply to nomoreheels]

So what are the rotten side effects? This is very new to me and I have done a lot of research on LDN.

[nomoreheels in reply to Simba1992]

Cyclothymia, hot flushes, nausea, stomach issues/pain/upset, fatigue, vivid dreams, sleep disturbance, tachycardia, anxiety, irritability, dry mouth. It's advised not to rely on LDN. Additionally it's advised at times of stress LDN stops working & damage occurs. If you've taken the initiative & buying your LDN from an alternative source & no longer under the care of a Rheumy who would prescribe the traditional treatment needed?

[Simba1992 in reply to nomoreheels]

I do not know where you have picked up your information on side effects of LDN. The information given by prominant doctors using LDN as well as patients have brought forward as one of great benefits that LDN has very few side effects and not toxic in any way, which certainly cannot be said about RA meds.

There are a growing number of doctors in the UK who prescribe LDN to their AI patients ( over 500 have special training in this).

There are a number of patients who have in fact educated their rheumies on LDN with the help of printable material from the LDN website intended for doctors, and have been able to get their rheumie or GP on board. Since LDN does not. interfere with RA meds, you as a patient can make the decision to try it or not. There are dependable prescribing sources for the med, and you are free to try it if you want. The important thing is to educate oneself thoroughly before trying anything new. LDN trust can give you support in this process.

[nomoreheels in reply to Simba1992]

Reputable sources, I don't use anything else if questioning something.

[Simba1992 in reply to nomoreheels]

The research and studies done on the longterm effects of the RA meds are far from thorough and the one -size -fits- all treatment of RA does in fact worry many doctors and scientists. The studies and research done on these meds are funded by Pharma and the published results are selective. The reality is not black and white. Since there are so many unknowns still and new research on understanding better the underlying mechanisms of AI diseases, is coming up with more new facts, we can as patients make these part of our treatment approach, educate ourselves and be part of the process of better, more individual treatment for RA. Hopefully in the future there will be a more innovative approach to using meds and combining them with dietary and other nontoxic immunesystem supporting measures.

[Simba1992 in reply to nomoreheels]

Something to read on cyclotymia and LDN.

drweyrich.weyrich.com/disor...

[nomoreheels in reply to Simba1992]

Have you read this link fully, including the small print?

[Simba1992 in reply to nomoreheels]

Have read, including the small print. Do not know what you are referring to.

[nomoreheels in reply to Simba1992]

Alternative treatments that replace conventional medical treatment are not approved by the FDA, but may be based on traditional or historical theories and practice. Their safety and effectivenes is considered unproven by conventional medical authorities

According to the Low Dose Naltrexone home page [LDN], LDN has been seen to benefit depression and bipolar, so it is reasonable to consider LDN for cyclothymia as well

Dr. Weyrich notes that these reports are considered anecdotal, and without expensive double-blind placebo-controlled trials (which are unlikely to be funded, since LDN is a generic drug that cannot be patented), these results cannot be provento be anything more than "spontaneous remissions"

Dr. Weyrich has been trained in the use of Low Dose Naltrexone (LDN) and offers these protocols as a complement to other therapies; however at this time Dr. Weyrich has not treated any cases of cyclothymia using LDN

The information on this site is for educational purposes only. It is not intended to diagnose, treat or cure any disease or illness. The statements on this website have not been evaluated by the Food and Drug Administration. If you have a health concern or medical condition, consult a licensed healthcare provider.

Dr. Weyrich may earn a small sales commission on purchases made by following links in the References section.

Dr. Way Rich is not a qualified Medical Doctor

[Simba1992 in reply to nomoreheels]

There are several medical doctors that do use LDN successfully with these patients. The fact that there is not sufficient research on this really does not change anything since sufficent research rearly exists. Anecdotal evidence is nothing to be belittled. There is a great number of doctors that use off label meds because they have seen the beneficial effect.

[nomoreheels in reply to Simba1992]

I understood we were discussing this particular editorial. The fact is that the safety & effectiveness is unknown & it's considered unproven by conventional medical authorities & remains a complementary/alternative treatment. The science of Medicine doesn't rely on anecdotal evidence I'm afraid.

[Simba1992 in reply to nomoreheels]

This article among so many others shows what blind belief in the research and marketing of Pharma with the approval of FDA can result in.

nytimes.com/interactive/201...

[nomoreheels in reply to Simba1992]

In the link it's illicit drug abuse that's being reported on not medicines, with the exception of one. Those mentioned (heroin/black tar, cocaine, fentanyl), haven't been researched or marketed by any pharmaceutical company to my knowledge, except fentanyl of course, & are specifically being used for recreational use ("prescription drugs at parties") on the streets. This is beyond the control of the pharmaceutical company who makes fentanyl if it's not being used as intended & the others aren't really relative to what we're discussing are they Simba?Nevertheless, only a small fraction of people who abuse prescribed pain relievers switch to heroin use. According to general population data from the National Survey on Drug Use & Health less than 4% of people who had abused prescription opioids started using heroin within 5 years. Drug abuse has been a problem world-wide for yonks & unfortunately continues.

[Julie_R]

Folks,

Hey, I don't want to get into a tussle about clinical trials, off-label use, etc. But a reputable researcher (Younger, et al) group suggested in a peer-reviewed review article concerning multiple conditions that MS & fibro etc patients who happened to have higher sed rates seemed to have the most improvement on LDN. They suggested trying LDN for PMR and RA. Since I seemed to have one that led to the other, and I couldn't take any of the other drugs, I tried LDN.

Major success. In fall 2015, I went straight to LDN, with synergistic undenatured collagen, diet, anti-inflammatory supplements (turmeric/pepper, etc). No prednisone, mtx, DMARDs, or biologics. I thought I was going to die, and now I'm almost back to where I was before onset. Yes, anecdotal, but I'm not going to turn down success! Blood tests and sx tell the tale. I don't want to repeat here. Read my other posts; they are quite detailed.

You'll know within a month of reaching optimal dose if LDN is going to help you enough. Use those "side effects" to tell you if you are over optimal dose and need to drop back. If you have tachycardia, anxiety, depression, etc as listed below, you are taking too much. If your pain level goes down, your flexibility improves, and you feel more "solid", that's the right dose. There truly is an individualized "sweet spot" with LDN. Use blood tests to verify that it is working long-term, although sx improvement is faster so will be your clue for proper titration. It doesn't take much; I'm on 2.5 mg (but then I only weighed 100 lbs when I started and am hypersensitive to virtually all drugs.) Again, see my previous posts.

Oh, and I also have MS and fibro, but the effect of LDN on them seems to be taking a lot longer and is more subtle...but I've had those for 35 years now, so it's going to be harder to reverse the damage.

And yes, when I've had some stressful times in the past 2 years, all my conditions have revved up a bit. That's a sign to take better care of me. No drug is going to immunize you from lack of self-awareness and self-respect. I will say that LDN seems to have made me stronger emotionally, and enabled me go through therapy that allowed me to trust those stress reactions and learn from them, and I came out much more functional than I have been for a LONG time.

Besides my posts, I highly recommend The LDN Book by Linda Elsegood as a reference. Far more material than most folks will want to read or understand, but take what you need...

Oh, and I don't get my LDN from a rheumie; in the U.S., they tend to be too close-minded. In fact, I was rejected by mine as a patient because I wouldn't do a prednisone trial for PMR (and he got rather perturbed when I trotted out current ACR dx protocol, which does NOT include prednisone trial). Rheumies do what they know, and Pharma has made sure that not Rx'ing DMARDs is considered malpractice, so they can't take a chance. But, in the U.S., naturopaths and some MD's and DO's will Rx LDN. And my naturopath is much more comfortable with the fact I have successfully treated my MS with a strict Swank diet etc, no drugs. So she's my GP now...

Good luck!