Behcet's Syndrome Society


hi, I've not been on for a , basically because I've been so well. I have been taking ldn now for 3 months and almost straight way I was better.

Gone were my skin and ulcer complains and fatigue. It took a little longer for joints to stop hurting but the have. Im pretty much 100%.

This drug has very little side effects, unlike methetrexate and prednisolone. I've been able to reduce the prednisolone to 2.5 mls a day.

I strongly advise anyone who felt they're at last chance saloon with there meds and this horrid illness to look it up.

Most consultants are still sceptical, but mine said yes was worth a try as nothing else was helping.

I really hope this helps others as it has helped me.


9 Replies

What is LDN?

1 like

Hi Di

I was wondering the same but found the below on

There is growing recognition in the scientific community that autoimmune diseases result from immunodeficiency, which disturbs the ability of the immune system to distinguish "self" from "non-self". The normalization of the immune system induced by LDN makes it an obvious candidate for a treatment plan in such diseases.

The experience of people who have autoimmune diseases and who have begun LDN treatment has been remarkable. Patients with diagnoses such as systemic lupus, rheumatoid arthritis, Behcet's syndrome, Wegener's granulomatosis, bullous pemphigoid, psoriasis, and Crohn's disease have all benefited.

Because LDN clearly halts progression in multiple sclerosis, its use has been more recently extended to other neurodegenerative diseases, such as Parkinson's disease and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) whose etiology remains unknown but for which there is suggestive evidence of a possible autoimmune mechanism.

In addition, people with fibromyalgia and chronic fatigue syndrome have had marked improvement using LDN, suggesting that these entities probably have an important autoimmune dynamic as well.

Hope this helps

Regards Lisa


Thanks Lisa - very helpful info and it sounds good eh?


You are welcome. Yes it sounds good and I'm really glad it is working for Anna. I will be showing it to my consultant but don't think he will put me on it since it isn't licensed in the UK yet :-(

Take care



Yes that's it. It has made such an amazing difference to me, I can't believe it. At first I thought I was just a good phase but as I say I started just after I ended up in hospital at Easter, previously nothing was working,

The side effects are minimal and I've been lucky only experiencing vivid dreams.

Anna. X


Really pleased it is working for you Anna. I am due to start on Enbrel injections next week and hope they work but I will show my consultant the info on LDN and see what he says.

Thanks for your post - let's hope there is a light at the end this tunnel :-)

Take care

Lisa x


Good luck, but as I said my consultant was sceptical, but I said I was fed up taking immunosupresents when all they did was make me worse.

He said give it ago the are very few side effects. I'm due to see him in October so hopefully he'll have more faith in LDN.

Anna x


Hi there

Am excited to read about this. I have an appt with my Neurologist on Thursday re my MRI and LP results (suspected neuro BD) so will raise this with her as a possible alternative to Aza that they keep suggesting is the only way forward (am on Prednisolone at the moment).

Ashley x


I know this is old, but i was wonder how you are doing with the LDN?


You may also like...