I bumped Sarah's thread so you could read it.

Hey, thanks DellaJeanne. Yes, Shirley and I have been exchanging information. It's too bad more people aren't on LDN with other diseases.

What I CAN tell you is that there is one person with Parkinson's in the Parkinson's group who's doing really well on LDN and this is after a stroke and 15 years of Parkinson's.

I also looked up a girl named ValerieK on the RA group. She had written to me ages ago and I don't know why, but she never seems to come to the group anymore. She had been on LDN for like 8 months (I think) and in reading back to her story I realized, she said that LDN wasn't doing the trick for her.

So I just wanted to let you know that for some people it works and for others it doesn't. Of course, what would they feel like if they were off LDN? I can tell you that it worked miracles for me, but it DID hit some kind of plateau and I needed something in addition to it. So it's my personal recommendation to you that you have some sort of back up plan in case that happens to you. Like perhaps you want to try antibiotics or Neprinol, or something else. Changing your diet helps too of course.

Oh and in regards to Arava and Methotrexate................
Those are immune suppressant drugs and LDN improves your immune system. I can tell you that there hasn't been enough studies done on LDN to really know. And I can also tell you that in a study for Chrohn's I believe, they were allowed to stay on their normal immune suppressant drugs and take LDN at the same time, which the majority of them reached remission.

So if I were you, I would gather up as much info as possible and talk with your doctor about it, and as well talk to your doctor about a game plan if LDN isn't doing the trick. Discuss what options are compatible, or what drugs are working for others.

I look forward to reading your success story!
Best,
Sarah

Hey, thanks DellaJeanne. Yes, Shirley and I have been exchanging information. It's too bad more people aren't on LDN with other diseases.

What I CAN tell you is that there is one person with Parkinson's in the Parkinson's group who's doing really well on LDN and this is after a stroke and 15 years of Parkinson's.

I also looked up a girl named ValerieK on the RA group. She had written to me ages ago and I don't know why, but she never seems to come to the group anymore. She had been on LDN for like 8 months (I think) and in reading back to her story I realized, she said that LDN wasn't doing the trick for her.

So I just wanted to let you know that for some people it works and for others it doesn't. Of course, what would they feel like if they were off LDN? I can tell you that it worked miracles for me, but it DID hit some kind of plateau and I needed something in addition to it. So it's my personal recommendation to you that you have some sort of back up plan in case that happens to you. Like perhaps you want to try antibiotics or Neprinol, or something else. Changing your diet helps too of course.

Oh and in regards to Arava and Methotrexate................
Those are immune suppressant drugs and LDN improves your immune system. I can tell you that there hasn't been enough studies done on LDN to really know. And I can also tell you that in a study for Chrohn's I believe, they were allowed to stay on their normal immune suppressant drugs and take LDN at the same time, which the majority of them reached remission.

So if I were you, I would gather up as much info as possible and talk with your doctor about it, and as well talk to your doctor about a game plan if LDN isn't doing the trick. Discuss what options are compatible, or what drugs are working for others.

I look forward to reading your success story!
Best,
Sarah

Oh and I also wanted to mention, so that's four now with RA that have tried LDN. Comfypaws, Aprilrenae, me, and ValerieK. 3 out of four of us it worked. Not bad really.

Keep in mind too that most drugs like methotrexate hit a plateau with RA as well and we need additional treatments. So when taking LDN, keep a detailed journal of what it is or isn't improving so you can really know how it's working and be able to better decide if you need an additional treatment in the future.
Best,
Sarah

Good luck, hope it works well for ya :)

Sarah
Don't post often myself, but thought this might be the group to ask and LDN and RA.
I stopped Embrel and Methotrexate on Sept 15th last year, and then about the second week of October I started LDN at 1mg and worked up to 4mg. I have still not gotten the pain and joint relief I want, and had to bump my Prednisone back up to 10mg. (the upper limit to still remain non-immunosuppressed)
As I approach the year point, how do I decide if LDN isn't for me? Also, any suggestions for conventional meds that those who went that way felt were the safest?
I understood from other posting LDN takes greater than 9 months for RA, but how much longer?
Thanks

I tried it before I went to conventional drugs. It did absolutely nothing. I was on for 9 months in 2012. Along with diet and exercise and supplements I was hopeful for change but I ended up having to succumb to biologics and DMARDS to control my disease. Good luck to you. I would love to hear that it helps someone with this disease.

At the 13th month of LDN I decided my pain was not resolving, and my CRP was over 15, so stopped the LDN. I met with a new Functional Rheumatologist, and listened to her thoughts. I had already decided I would resume Enbrel, and with it Methotrexate. She suggested Injectable Methotrexate, to decrease the first pass effect on the liver.
She also mentioned having several patients who were on conventional meds, and also took LDN. She said, " it appears to be against the common thought to take an immunsuppresant and an immune modulator at the same time, but some of her patients are doing well on the combination. I have a few months of tabs left, so will continue taking it. I am at about the 3 week period now, and my sleep is stable, I also have been able to cut my prednisone dosage from 12.5mg/day to 5mg/day. Wish it had worked, I gave it a full year .