Ra sufferer

[Rocky07]

Hi everyone first I would like to wish you all a happy new year with positivity and hope I am from australia I have mentioned before about low dose naltrexone for ra I suggest you look at utube and internet I have spoken to a compound pharmacy that makes what I heard was interesting my next appointment with my rheaumatologist I will be discussing this if I. Am not satisfied I will be taken. It fur. But please do your research

[Leonwp]

Thank you and happy new year to you.

[Ali_H]

Hi and a happy new year to you,

Have you read this one

sciencebasedmedicine.org/lo...

It kind of puts 'big claims' into perspective (not only for LDN but for other cure-alls and blanket fixes out there) - more proper research needed me thinks to validate (or not) the claims made about LDN and its possible benefits for those of us living with autoimmune diseases.

All the best

Ali

[AgedCrone in reply to Ali_H]

I think I might ask my Rheumy if would do any harm to take it together with our prescribed meds.

Surey if it was as good as we hope it might be.....there would have been some concentrated clinical tests by NRSA & other reputable research bodies?

We can only hope.

[Simba1992 in reply to AgedCrone]

The problem is that getting funding for research on LDN is not very easy since Big Pharma is not interested. However there are numerous clinical studies going on funded by patient organisations and some univesities. These studies have shown great promise for treatment of several AI diseases. There is quite a lot of excitement around this med in the medical community that can be followed and listened to in the yearly international LDN congresses where doctors and scientists come together to update and compare their results in treating patients with LDN. This info can be found in ldnresearchtrust.org and ldnscience.org.

[AgedCrone]

I'd give it a try, but just having had my first two RTX infusions & due for my bloods to be assessed I don't want any false results to appear in case I can 't go forward with the infusions.

I don't know if they are having any effect.....having recently broken my arm I'm aching all over & don't know if it's the RA acting up or the after effects of the fall.

Time will tell I guess!

[Hidden]

It's interesting to me that everyone calls for clinical trials, but it seems like some of the trials are happening with real people. Of course, the issue is that they are uncontrolled and untracked / unreported..

I still think it is good to try other things, as long as the diseases we are fighting don't run rampant in the meantime. If my Minocycline therapy doesn't get me to remission I will keep this in mind. Thanks for the information Rocky AND the cautions as well Ali_H. I think we can get so miserable with this disease that we would do almost anything to get to remission... I hope everyone has a Happy New Year and I will see you in 2017

[Simba1992 in reply to Hidden]

Hello CaerylUSA,

Would be very interested to hear more about your Minocycline treatment. How long have you been on it? Are you taking other RA meds? Are you on a special diet? Have you had problems with your stomach? Can you be in the sun at all? Do you still need pain medication? How long did (if) take for symptoms to decrease?

Sorry for so many questions, would appreciate very much if you could help me understand how Mino is working for you😊

Simba

[Hidden in reply to Simba1992]

Hi Simba - A little context: I am classified as severe and aggressive (to make sure people know that I was not just "a baby case of it" as one of my friends said to me - ha ha). Also, it was six years ago that I was diagnosed and I ignored it for the first four (I guess classic denial). When I got almost immobile, my GP begged me to go to the rheumatologist, so I did. She promptly tested me and put me on 15 mg of MTX. Four months later, she upped it to 20 mg and then 7 months later wanted to put me on Humira. At that point I started looking for another solution.

I found the original reference to antibiotic therapy protocol on Dr. Joseph Mercola's website: mercola.com

and followed that with a complete review of the Road Back Foundation website. That foundation is based on Dr. Thomas McPherson Brown's treatment of more than 10,000 patients, getting them into remission, with this protocol. Every question you could have is answered on here, especially the FAQ section roadback.org/ I started Minocycline (worked up to 200 mgs a day) for the last year. Herxed pretty severely for the first two months, then smoothed out. I take it with lemon water or cayenne capsules to keep from upsetting my stomach which Minocycline tends to do. I also take a lot of high quality probiotics to try to keep my "flora and fauna" in check.

As for my results, the most recent ones can be found here on the board at:

healthunlocked.com/nras/pos....

I am still in pain, but it is controlled by a couple of Tramadol most days. I still flare, but now instead of lasting a week or two, it lasts a day or two. I still take about a half an hour to get moving in the mornings, and I still sleep at least 10 hours a night (when I can sleep- that is still an issue with the restless leg syndrome). However, my last sed rate was good, and so I think I am going into remission. Most days I can do things like rake leaves or clean house which I could NOT do when I started the MTX, OR when I started the Minocycline, and I am not too bad the next day as long as I don't overdo it. My joints are no longer red, hot or swollen and I can use my hands almost as well as I always could.

It took two - three months for me to get past the Herx reaction (you know - severe flu like symptoms, etc. then another three to start seeing a good lessening of the pain. By ten months I was where I referenced in the above post. I have been on it about 13 months now, and it is my understanding that it will probably take around 3 years to get to remission, although I heard from another board member that she did the same thing and ended up back on the MTX and other RA meds, so it is not guaranteed for sure. I am playing the cards for now because I felt really bad on the MTX, and did not feel like it did a lot for me.

Hope that answers your questions, but if not, let me know? Thanks!

[Kathy1465]

I have not tried LDN. However I did start minocycline a few months after my ra diagnosis. It was very helpful in treating the excruciating pain I started off in. I was on it for several years and was able to get by with it and pain meds. However the constant fatigue and need for pain meds was difficult. After trying many alternative options like going sugar and gluten free, taking various vitamins and herbs, and even a trip out of state for antibiotic treatment, I finally through in the white towel. It was a very difficult decision but ultimately I went on Humira, which served me very well for two wonderfully pain free years. Recently I developed a butterfly rash and mildly positive ds DNA suggesting lupus. The big question now is could it be drug induced from Humira or here to stay. Only time will tell. I will say I am glad I tried everything I could to fight against this autoimmune disease. And I haven't stopped yet. Rocky I wish you all the best with LDN. When I was still frequenting The Roadback website, many others there reported positive results with LDN. Please keep us posted how it goes for you.

Kathy