Just wanted to let you know - after 3 months taking LDN I'm feeling really great!! I've even moved house and not had a flare up!! It's amazing. I get the odd grumble in my joints and tendons (not surprising considering all the stress of moving and lifting heavy boxes etc) and I think 'uh oh here we go again' ...but it doesn't come to anything! I feel so grateful that I feel like my real self at last and no longer confined to bed all the time!
I noticed:
after 2 weeks: it was easier to feel happy about life
after 4 weeks: I noticed I had a much higher tolerance to pain
after 6-8 weeks: my immune system seemed to calm right down
I really recommend it. The only side effects have been vivid dreams, and when I was increasing my dose, and trying to find my best dose, I noticed I got a bit dizzy and heart racing, so that's how I settled on 2.0ml. I started on 0.5ml and increased by 0.5ml every fortnight until I found 2.0ml best for me. It's so amazing to finally find a drug that works for me. And it has none of the horrible side effects of the normal lupus drugs I tried. Hurray!!
If you've not heard of LDN I'll post some links about it in the comments below. It's not available on the NHS and I had to buy a prescription from a private doctor and I buy the drug from a chemist in Scotland by post.
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Maya23
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Low dose naltrexone works great. I was at my worst when I discovered LDN. Low dose Naltrexone helps me a lot. I'm on 1.5 mg. Made me feel better, helped with skin conditions. I get 50mg naltrexone pills, than get it compounded into 1.5mg doses. I've been doing this a few years with volumetric dosing. 50ml of distilled water with a 50mg tab of Naltrexone. Dose 1.5mg (1.5ml) with an oral syringe.
Interesting. My post was from 4 years ago, and things changed a lot since then. The Lupus is in remission though which is great but I have Fibromyalgia and LDN didn’t help, so now I’m on Citalopram and Nortriptyline. Glad LDN has helped you!
Thanks for sharing dryad....still a drug...I guess when I can't get out of bed, I will try this maybe! I can live with the pain so far. I noticed I have been getting vivid dreams but not on any medicine. I also have heart racing occasionally. I have mitral valve prolapse. Right now I have terrible tmj for the past couple of days. Does this drug help with skin pain when in the sun? I have had a terrible time being in direct sunlight. Using sesame oil as a natural skin protectant. Helps. Dry eye? Does It take inflammation down in the entire body?
Yes it's still a drug but I'm so delighted that it feels nothing like being on a drug! It's such a low dose I guess. Yes it does seems to take inflammation down in the whole body - it seems to calm the whole immune system down and make it less over-reactive. I am in an LDN group ( on Facebook) where loads of people take it for Sjogren's, Lupus, RA, MS etc and say it's working well for them too.
My consultant didn't endorse me trying it, but he didn't tell me not to either. It's because it's not gone through large clinical trials for auto immune diseases at a low dose. However at a high dose of 50mg it has been through big trials and is widely prescribed on the NHS for other uses. It's a shame that our consultants don't know much about it, and that we're having to get hold of it through private doctors. I buy mine from Dr McCall who prescribes it widely for many autoimmune diseases with great results. He told me 4 months ago that I could be 'skipping about by the end of August' and I found it hard to believe him - but he was right!
No I have had no organ involvement thankfully. Just that burning bladder thing - interstitial cystitis along with the joint pain, fatigue and Fibromyalgia. I only considered taking LDN after having a mega flare that put my in bed most of the time over 6 months earlier this year. My whole life was on hold. Now I have much less fatigue too.
I'd better warn you - many doctors will not be enthusiastic about you trying this drug, or my testimony. It has only had small clinical trials for autoimmune disease. However please tell them - more need to know about it's benefits!
I thought I should let you all know that since I wrote this post, the move and all that business has caught up with me and I've had a small flare up this week. I've felt exhausted and achey, and have not done very much. But I have to say that my pain levels are still lower than they usually would be if I was in a flare without LDN. I think the LDN is still making a big difference. But I thought you should know that it's not a miracle cure or anything, but it certainly helps.
I got a phone call from Dr Mc call today to let me know that my prescription for LDN is being faxed to chemist and med should be with me in 2/3 working days.
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