New study on the effects of LDN: The study shows that a... - NRAS

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New study on the effects of LDN

Simba1992 profile image
10 Replies

The study shows that a persistant use of LDN reduces the need of the meds used in treatment of seropositive RA. More research is needed.

journals.plos.org/plosone/a...

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Simba1992 profile image
Simba1992
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10 Replies
Jesnaskah profile image
Jesnaskah

I use it and I think it helps me. Although, I have sero negative RA.

I'm currently off all meds aside from LDN and I use CBD oil.

Thanks for the article.

Simba1992 profile image
Simba1992 in reply toJesnaskah

Thank you for your reply😊I do not think it makes a difference if you are seropositive or negative. It has helped me a lot as well. How long have you been taking it? have you taken RA meds?

Jesnaskah profile image
Jesnaskah in reply toSimba1992

Hi Simba.

I was diagnosed in summer 2017, so the end of July, was put on Prednisone (doses went up and down), then by mid August, I started MTX. Did that for 2 months, stopped, tried Leflunomide, after 8 days, stopped (insane neuropathy!), then off to Plaquenil for and 2.5 weeks and then neuropathy crept up again. Decided no more. Plus, Prednisone made be feel great! So I decided, I'd just stay on it and see what happens.

Husband discovered LDN Feb 2018, been using it since. Started at 1.5mg, after 1 month went up to 3mg, after 3 months went up to 4.5mg and have stayed here since. I love that it's non toxic! At the same time I'd changed my diet, and tried to, very slowly, taper my pred. Every doc I had ever seen made fun of me for how slowly I did it, I'm talking about lowering 0.5mg as I felt I could when the time was right. But it's ok. They can make fun and laugh, they don't know or feel what i feel!

But here I am now, fully been off pred since end of Nov 2018 and managing! I'm so grateful🙏

My onset was so scary, I was crippled!

Colder, rainy weather effects me, but so far, still manageable.

Wow, this was long... Sorry!!! Didn't mean to bore you 😅

Simba1992 profile image
Simba1992 in reply toJesnaskah

I am so very happy for you😊👍🏻Somehow I have had the feeling that those with seronegative RA have even better results than the positives. It's really too bad that the rheumies are more or less forced to keep to the toxic meds. But we as patients have the freedom to look outside of the box and turn to doctors that can give other options.Our wellbeing should always be the guiding factor. Thank you for your story. Hope others on the forum read it as well. All the best. Simba

Jesnaskah profile image
Jesnaskah in reply toSimba1992

Thank you!! I completely agree. Although, I'm glad that the more traditional methods/meds have been able to give many their lives back, I just wasn't one of them. And really, who knows what the future holds, but for the sake of our mental health, we should take it one day at a time. Have a great day/evening!! 😊😊

Simba1992 profile image
Simba1992 in reply toJesnaskah

You are so right! More a question of using wisly all existing options 😊

Mmrr profile image
Mmrr in reply toSimba1992

Simba do you know if the results are the same for seronegative RD ? I can't find much. I have been in contact with the pharmacy in Glasgow, who have given me lots of info, but pain isn't really my issue.

I have taken prednisolone around 2 am for the past 2 nights (I'm usually awake then). I think it is helping reduce the morning groggieness, I'll keep going for now and see how I get on.

Simba1992 profile image
Simba1992 in reply toMmrr

I have followed fb forum experieces of LDN and have seen more often seronegatives with really good results.I don't think there are any studies separately for this group. It's not only pain it also has a regulatory effect on the immunesystem.

Good to hear that taking the pred at 2 has helped👍🏻Have you asked if they have the modified release pred. That's easier then you need not wake up to take it.

Mmrr profile image
Mmrr in reply toSimba1992

I thought I would give taking prednisolone at 2am a go, then based on the evidence I have ask for modufied release if it is helping. I'll plod on for a week or so and assess the situation. Thanks for your help.

Simba1992 profile image
Simba1992 in reply toMmrr

Do tell me if you get the MR in UK. Cannot get it in France.

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