I have been looking into trying LDN and found an old post by MaryF from 2 years ago who is/was taking it and am wondering if anyone else has tried it.
If so, I would be very interested to hear your experiences.
I have had SLE for nearly 40 years and apart from steroids and azathioprine in the early years I have managed without any medication (do take a daily aspirin and levo for underactive thyroid). That is, until last year when consultant wanted me to try hydroxychloroquine sulphate.
After taking it for a few days last year I had unbearable itching across my stomach so I stopped. At my appointment earlier this year the consultant said to try taking one a week, which I have been doing but found the eczema on my hands is becoming more and more aggravated.
So now I would like to try LDN but don't think my consultant will be agreeable as when I mentioned it to him before he didn't know anything about it and not sure he would be interested in prescribing it.
Any thoughts?
Written by
terri_b
To view profiles and participate in discussions please or .
I am considering finding out more about this LDN too. A friend of mine who's just been diagnosed with MS started taking it almost immediately - she found a sympathetic doctor in Scotland who prescribes it privately for people with MS and she is under his guidance. She said she noticed an immediate improvement. If it can help halt the progress of MS then I think it's worth trying for Lupus.
By the way, like you, I also have had no luck with other drugs I've tried Hydroxy (made me unbearably nervous) steroids (made me suicidal) and Naproxen (have to be careful because of it causing stomach problems), so I'm surviving on no drugs except for the odd Naproxen when the pain and fluey aches get too bad to live with. SO what interests me about LDN is that it is already approved in high doses, and all we need is a Low Dose!! it sounds promising.
I took it for awhile. I had hoped it would help with pain, but it seemed to help with brain fog more. I was on 3 mg. and the dose recommended at Stanford for fibro patients is 4.5. I wanted to go to that dose, but I had to drop the doctor who was prescribing it, and my new doctors didn't know what it was, so I gave it up. I think it is worth trying, but it something that may work or may not, but it is safer that most things your doc may try to give you.
I have a sister with MS who is taking LDN and it certainly helps her, she actually suggested I try it and at such a low dose it is said to be very safe. So I think it is definitely worth a try even if it doesn't help - no harm done.
I also emailed the specialist nurse at St Thomas' Lupus Trust to ask about LDN and after her discussion with the consultant I got the reply that he regarded it as a placebo effect. I wish more of the medical profession were a bit more open minded in investigating other therapies.
I think I will print out as much info as I can and take it along to my next Lupus appointment and see what reaction I get. Unfortunately that's not till August!
If no joy there than I suppose a private prescription might be the next option.
Stanford has done the research on LDN and fibro. Maybe you can find some articles that will be helpful to you. At least for fibro it doesn't seem like the placebo effect. If it is the placebo effect and is harmless, just tell him you will go for the placebo effect!
This is one article, but it is used by people with all sorts of autoimmune conditions. A neurologist gave it to me. Since he had MS patients, I think that is why he knew about it.
The other thing about the placebo effect is that is did the opposite of what I had expected. I thought it would pain. No. Didn't even think about the brain fog, but that was it seemed to help with. I really don't believe the placebo effect would really work with lupus. Our symptoms are too long lasting.
Good luck with it and please post your results.
It did absolutely nothing. Will I take this instead of prescriptions? No, I won't.
I had high hopes of it working but it did nothing at all for me either. I paid for
Mine privately and took it for over six months. Another disappointment. I guess you won't know until you try though. If anyone wants to know where I got it get in touch. I think it cost around £30 a month.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Third vaccine dose
Is there such a thing as total remission in lupus ?
