After a horrible bed ridden year of major fatigue and pain. I took the decision to stop methotrexate as I'd got worse not better from taking it.
A friend of mine with ms told me about LDN, and how it was making a major difference to her in particular the fatigue.
I looked up the websites and spoke to my consultant, his view was the website and research was 'too good to be true, however the fact there is very little side effects there was nothing to loose.
I had to get a private prescription as sadly the UK haven't yet licenced it. Scotland Ireland and Europe all have.
Once I had my prescription it costs me £11 per prescription of ldn which last about 12 weeks direct from dickens pharmacy in scotland.
My consultant and gp both have been notified of what I'm taking.
It has been a miracle for me, skin ulcers and fatigue gone!!!!! My joints are still painful but manageable. I've managed to drop the steroids down to 2.5 the lowest since I was diagnosed 5yrs ago with no flare ups!
Who knows maybe I was due to go into remission anyway and it's a fluke but all I can say is hello life again.
Anna
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frisky
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Really intrigued to here your news, and there does seem to be a lot of available information about LDN. Would you mind sharing with me how/who you obtained a private prescription. There are suggestions on the dickens web page did you follow any of these. You may not want to post so happy to share e-mail address if that works. Look forward to hearing from you. Ray
Thanks Anna 0 spent the whole evening researching this - I think I've convinced myself to give this a try before Aza. I'll keep you posted! Really pleased it working for you and I too long for that getting up and feeling good feeling that is so rare! Warm regards Ray
I've been on for two weeks, and for the first in a very long time I feel normal!!!! I feel like me! I even swept my yard yesterday which is something I would never been able to do before. It's silly things that make you realize how good it is to be feeling normal.
Good luck lesley with methotrexate. It stop working for me and make me feel alot worse.
I'm not sure MTX has really worked for me. What seems to happen with is with all the treatment is that they just take the edge off the disease because when I change to another drug I have a real flare.
You must have felt great sweeping the yard - I know I couldn't at the moment.
Please keep us informed - I'm going to read it up and talk to my doctors in about three weeks.
This med is used off label for pain, it will not stop the disease from progressing. It isnt in the same class as Immunosuppresants, biologic? etc...it was originally developed for.ppl who had a drug/alcohol problem to keep them from using. Also if one goes to the hospital for an overdose they wld push this med. It does block pain receptors, so hope it continues to help u
Hi Guys, i have to spread the news this is a MIRCLE DRUG!!! I am better for the first thime in 4yrs!!
i have been to the gym and cycled, yes i ached a little but only a little!!! my energy levels have gone back to normal, i feel like a human being again! i never thought i feel this way again, also managed to drop steriods to 2.5mg, this has never been achived in the last 4 years. I do have a small amount of mild ulcers but bothing too bad...................
I really hope this will be able to help others, i do know this drug doesnt work for everyone.
Hi I asked my GP about this on Monday [took all the printed info off internet] and he told me it hadn't been passed in the UK and would also affect the pain receptors from the Butrans so didn't push it, have you had any problems with your pain meds? Love Lesley x
Hi frisky, I'm also on LDN and have had great results for fatigue and my pain seems more manageable. However, when I go through my migraine episodes I struggle. What are you taking for pain that works while on LDN?
Just checking in to see if LDN is still helping? I recently got dx.d with Behcet's after a failed back surgery caused my first real attack. Never should have had surgery!!! I've been in bed for 5 months with severe back pain, since the surgery. I just started LDN, and within days, really, have had much less pain. I was very skeptical, but I had nothing to lose. I have been on Norco for 5 months round the clock. I wait 4 hours after my last evening dose before I take the LDN, have not noticed any negative effects. I dont expect it to cure Behcet's, but less pain is a big relief!
Omg...I love the fact that OTHER fellow BD'ers have tried LDN. I started taking it a little over 2 weeks ago and im feeling normal for the first time in 2 years. I haven't had a day in bed for 10 days now....I could not be happier with this medication. LDN was prescribed by my Naturopath Dr. However, when I told my primary Western Dr. He was not excited at all. He told me I should only take it for another month which bummed me out. Over the past 2 years I've worked hard to quit all pain meds and it's been a long ugly journey. I'm on 6mcg of the Fent patch which I was told I could stop because of the LDN. I think the best part of this med is just getting my energy back and the mental heaviness lifting is worth the pain sometimes. My fibromyalgia and migraine are still acting up, but I can handle it better for some reason now. I was dx with Behcets 12 years ago and it's been a nightmare at times....I feel hopeful now. Good luck to all of you and make sure you advocate for yourself.
Thanks everyone. I heard about this drug yesterday by an MS sufferer. Its really interesting to Know there are others out there using it. The person I new bought it on the internet! For those whose Rheumo's agreed to prescribing do you think its worth asking? I am unsure of side effects but it is an opioid blocker I believe, used for heroin addiction. I would be interested to know the chemical pathway?? Any ideas anyone?
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Behcet's and diet?
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A very strange condition! The first description a Consultant used to explain about Behcets.
