Great that LDN is now on HealtUnlocked.....perhaps people will now take it seriously!!!

I have Lupus - diagnosed in Feb 13-but suffered for many, many years prior to that!! (long boring story) .....I eventually found out about LDN around Feb this year and started taking it on 11/3/2014...

Progress so far:-

Have managed to reduce steroid intake from 10mg daily to (at the moment) 1mg every alternate day-and will hopefully be off of steroid altogether by the end of this week.- LDN 3,5mg (liquid nightly) going to rise to 4.5mg once off of steroids.

I am feeling almost 'normal' My Lupus is still present-have tender points on both knees and elbows (but these have been a constant for many years and I can cope with them) some pain in hands- feels like 'chinese burns' around the wrists occasionally-especially when tired- they are still weak and believe that they always will be (but you never know! :-) ) and the tops of my feet 'sting' usually this happens after being at work (I work part-time and am on my feet for 8hrs whilst there. BUT......I have not had a 'full flare' of my Lupus since taking LDN-I have had 2 colds (which would always-always prior to LDN result in a flare-to the point where I could not get out of bed for the pain-even lifting the duvet would hurt!! - even the tips of my earlobes-at times I would think to myself that if someone said 'take this may kill you, but it will get rid of the pain!' I would have taken it-not because I was suicidal or fed up with life, but because the pain was that bad. So my message is that LDN is just Fantastic!! I LOVE IT and only wish that I had heard about it sooner!! Once I am off of the steroid completely (hopefully Sat this week) I intend to announce it on the LUPUS HealthlUnlocked site-as I believe it is my duty to let everyone know about this great inexpensive (no bad side effects!!) treatment ....and am really glad to see a HealthUnlocked site dedicated to it...because sometimes when I mention it I am sure that people think that I am trying to make money or something-but all I am trying to do is stop their suffering in the way that I suffered for many years!!

6 Replies

  • Thank you for your inspirational post! Would you allow me to interview you over the phone so I can add your experience to our YouTube Channel?

  • Yes....of course, I would love to be part of it. My telephone no is 01992 719223 just let me know when so that I can arrange for it to be quiet in the background ( I work some days and also have my Grandson on some days so it can be a bit noisy!

  • Are you around tomorrow about 2.30?

  • No probably not, and I have my Grandson on a Fri afternoon-But I am around on Sunday or Monday at that time-iif that is any good?

  • Hi bam1993,

    My daughter has undiagnosed auto-immune, probably lupus, and is thinking about ldn before going on plaquenil, which is what her rheumatologist wants her to go on. Have you seen any difference in your blood work? I was wondering if it makes a difference in the ANA, sed-rate, or any other elevated blood tests.




  • Hi cl10s....I have to be honest here in that I do not know!!! My situation is that I was on Metho and Quinorix (Plaquenil generic) but the Metho affected my liver very badly,(I believe I may have auto-immune hepatitis) so had to come off of it - then was just on steroids and Quinorix and my Rhuemy wanted to let my liver calm down then was going to put me on something else (prob Cellcept) in the meantime I heard about LDN, so at my next appt with Rhuemy I asked him about it (I had still not seen liver specialist at this point) and he said he could not prescribe, but if I wanted to try it it was up to me, and that he would still monitor me. So I went ahead-(my GP was also aware that I was doing this) I saw the liver specialist in early April and told him that I had taking LDN-he said that was fine-and then again I had a Rhuemy appt at the end of April....He was very pleased with my progress (all it said in my follow-up letter was something about Lupus serology-and I took it that Lupus is still showing in my bloods somewhere-but not exactly how or to what amount-My Rheumy has given me a follow-up in 6mths (I usually go every 4 mths) having a blood test two weeks before the appt...he took all of the details of the private Dr that is prescribing and at the end of the appt he said ' I am glad to see you doing so well, and am just sorry that I am not able to prescribe it for you'-that his hands are tied. I do trust him, and am sure that if he was worried at all he would have warned me. I don't know if any of this is any help to you at all-and I am sure that I could find out the actual results if I go to my GP. I wish your daughter well and all I know is that I feel almost 'normal' being on LDN :-) Juliex

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