A friend of mine who suffers from MS has mentioned this drug to me, but I cannot find anything out about it regarding Crohn's, there are sites which mention it but do not go into any detail.

Does any one have any knowledge if it, or can point me to a web site?

Hi Julie

I've just discovered LDN and have had it prescribed for Crohn's, am currently waiting for it to be posted to me so will let you know how I get on when I start.

Here's a couple of websites I found useful.

http://www.ldnresearchtrust.org/uploadeddocuments/ldn-fact-sheet-nov-2009.pdf
http://www.ldn-resources.com/index.html

There isn't a lot of info about, mainly I think as LDN isn't licensed for use in Crohn's but there's plenty of anecdotal evidence that it can be really beneficial to some people.  My pharmacist said that about 60% of people who take it for Crohn's had huge benefit and stopped taking other meds.  There was a small trial in the US which had good results and a second control trial is underway.  The problem with LDN is that because it's a generic drug the drug companies are reluctant to pay for expensive trials as they won't make money from it and so doctors don't prescribe it as there's no proof it works, catch 22.

I'm of the opinion that it does no harm so why not try it, there's nothing to lose.  There's a significant number of people with MS championing the use of LDN as they've had excellent benefits from it too and there's a petition to parliament with 11,000 signatures which a TV doctor (This Morning, I think) is doing so there are a growing number of people supporting this drug.  The best thing about it is that at such low doses there are hardly any side effects, vivid dreams and sleeplessness seem to be the two main ones which compared to traditional Crohn's meds are minor.  

If you would like any more info let me know.

Suze

Hi all,

I was just about to start a new thread about this drug...when I seen this one. I discovered LDN by chance a couple of months ago and since then I have done soooo much research about it. I've even had an article printed in my local newspaper about it and how it can be used to treat crohn's.

I have tried to persuade so many GPs and my gastro to prescribe it to me but none of them will. It's driving me crazy! I've had problems with other medication, which you can read about on my other thread, so I am literally desperate to try LDN. And if it doesn't work, then at least I can cross it off my list.

Suze, can I ask which area the GP who has prescribed it to you is based in?

Thanks!

xx

Hi

I've sent a PM to Nicole with my GI doctor's name, based in Edinburgh.  My GP refused to prescribe LDN but the GI doc was happy to give it a go and now seems quite interested in learning more about it.  Here's a link to the pharmacy I used, www.dicksonchemist.co.uk they've got info on there about GPs who can prescribe over the phone with a copy of your medical records.  There's a GP, Dr Tom Gilhooly at The Essential Health Clinic in Glasgow who'll do this and he's just hosted the 2nd European LDN Conference.

I've got a stricture and needed surgery but discovered LDN so thought I'd give it a go first!  I'm also taking Azathioprine.  

I started LDN in liquid form 1mg at night and felt better after a couple of days.  I've just upped my dose to 2mg, am still on aza for now and am sticking to a low residue diet but I no longer have the nausea, bloating and pain although I have just developed an abcess.  The only side effect of LDN was that it took me a couple of hours to get to sleep at night as I took it just before bed, now I take it at 9pm and it's fine.  I'm increasing to 3mg next week.

I think it's working for me although it's a bit early to get too excited, if you can get some I'd recommend it!

I'd love to read your article Nicole, I too have spent ages researching it and am fascinated.

Would be great to hear from anyone else who has tried it too.

Suze

Hi I am new to this site. I have Crohn's and was diagnosed about four years ago. I am currently on 100 mg of aza and 800 mg of mesalazine. I am under a private doctor who is supposed to be an expert in LDN. The conventional meds are not working for me. The only thing that helps is prednisalone (although everytime I come off it I relapse) and an elemental diet. I cannot eat solids at the moment. I am trying to wean myself of the aza and mesalazine (I have already cut the doses down quite a bit). I have been on LDN for the past two weeks. I started on a dose of 0.5 mg and moved up to 1 mg last Saturday. I haven't seen a massive improvement in my 'movements'. The doctor thinks that this is a bad sine.I wasn't expecting to see a massive improvement as it is still quite early and I am still on the azathioprine. The only thing is, I have experienced some bleeding as of this morning. Does anyone have any imput about this? By the way I live in England where it is very hard to get LDN for crohn's but I managed to get it after about five months of trying.

Hi Juno

I've just tried 3 months of LDN whilst on Aza too.  I had joint pain which disappeared after a couple of weeks on LDN but I'm not sure it did anything for my bowel as I developed an abscess shortly after starting it although I hadn't long been on Aza too so it could have been caused by the reduced immune system.  My doctor agreed to a three month trial having never heard of LDN before so I know I was really lucky to try it at all but he now won't prescibe it again as he thinks the Aza has finally kicked in and started working after 3 months.

With hindsight I shouldn't have tried both together but found out about LDN the night before my appointment with consultant and was so desperate to try it as the side effects of every other drug are so scary but now I don't know for sure which drug worked but I am feeling better, not 100% but I'll do!

I get bleeding too, it's 'normal' for me and for lots of people with Crohns but if it's not normal for you then I'd mention it to your doctor.  It's very scary as sometimes there's so much blood and in between BMs it's still bleeding a little for days sometimes, TMI!

I really hope LDN works for you, supposedly it can take 2-3 months to be effective in some people, it's great that your doctor is an expert in it.

Let us know how you get on. x

Just thought that I'd mention that aza is one of a long list of drugs that aren't supposed to be taken with LDN. Aza suppresses the immune system, while LDN is supposed to boost it (I am not doctor, so please don't quote me). That is why I have been advised to try and wean myself off it as these drugs work aganst each other. If you ever want to try to LDN again in the future, you can get it prescribed privately. I did not have any hope of getting my NHS gastroenterologist to prescribe it so I had to get in touch with an LDN organisation.

Hi My consultant prescribed it privately too.  Prior to taking LDN I read a lot about not taking it with Aza and I spoke to the pharmacist who specialises in LDN and his thinking was that it's fine as long as you're on a stable dose of Aza and they can work together although the eventual aim is to come of Aza because LDN starts working and you don't need it anymore.  He explained the reasons very clearly and it all made sense at the time but I can't recall the details now although his view does contradict most other LDN specialists, he spoke at the LDN conference in Glasgow about taking the two together as well.

Do you know where I could get this info about aza and LDN please? Is this pharmacy the one in Scotland that is the only one that people in the UK can get their LDN prescription from? I would greatly appreciate any help that you could give me. The private doctor was fairly positive before I paid him the consultation fee (I have already been taken for a ride by a well known crohn's doctor and it cost me a couple of hundred pounds that I cannot afford). Now two weeks into the regime, he is all doom and gloom and seems to think that trying LDN whilst on aza is a complete waste of time. He has adopted an 'I told you so' attitude which is not helpful when you are very unwell. He also wants me to start taking max stength fish oil and zink eventhough he said it would take me about a year to work my way up, he has changed his mind and thinks I should start these things all in one go. When I tried the fish oil, it went right trough me.

Hi Juno,

Can I ask how you found a doctor to prescribe LDN privately? My gastro won't entertain the idea, and my GP surgery have finally written back to me with their decision.....and they won't let me try it either.

I'm currently trying pentasa and I've stopped taking my contraceptive pill, but no imrpovements as of yet, so I'm still keen to try LDN. I just want to feel better so I can get on with my life, but I find myself hitting a brick wall the whole time! As are many of us....

Nicole x

Hi Juno
It is the phrmacy in Scotland that said I could take Aza & LDN together.  I spoke to the pharmacist Stephen Dickson and he was really helpful, http://www.dicksonchemist.co.uk/.  There is also a private GP in Glasgow, Tom Gilhooly, who will prescribe LDN over the phone but he does need to see your notes, www.essentialhealthclinic.com.
Good luck getting it and let me know if you need any more info. x    

Thanks Suze. I have been in touch with Dickson's Chemist but not about the aza/LDN issue (yet).I haven't even gotten that far yet. I have found that I cannot tolerate LDN liquid, and that it is quite common for Crohn's patients to have a bad reaction (increased diarrhoea, bleeding etc.),when introducing LDN in liquid/capsule form into their treatment regime. I have been in touch with other Crohn's sufferes, who have informed me that they use LDN in cream form and that they have had more success with using it. I have spoken to my doctor and he has said that he will speak to Dickson's and try to sort out a prescription for the cream as soon as possibe.

Nicole 25-

Hi, I first contacted the Low Dose Naltrexone Research Trust (I will send details via email, if possible). They will put you in touch with doctors who treat Crohn's with LDN, who are near or in your location. You can go and visit them or if it is cheaper just have a phone cponsultation. There is a clinic in scotland who will give you a consultation for £30. I am currently under a doctor based in Wales, who charges about £165 as a one of fee for a phone consultation (but after that you can ring him as often as you like without having to pay another consultaion fee). Be aware that some of these doctors are not always what they seem. Also if you read my last post, you will see that Crohn's patients do not always tolerate LDN in liquid/capsule form very well. I didn't- after four days I experienced a bit of bleeding and my BMs started to increase. Don't let this put you off- make sure that you do some research first. Also it would be good to investigate LDN in cream form. I am hoping to try this soon. I have found that it isn't as hard as you think when trying to get a prescription for LDN .

Thanks Juno, I'll have a look. I've already done a lot of research about LDN since discovering it earlier this year...I guess it's like most Crohn's treatments, it doesn't work for everyone and not everyone can tolerate it. But I'll give anything with minimal side effects a go! Especially after my ordeal with steroids.

Also just to add...I think if you're going to try something new, it's not a good idea to mix it with anything else to begin with. If you do, you'll never really be sure what's working or what's causing what side effects. It's very time consuming, there's no doubt about that! And there's certainly no quick fix.

x  

I have started using LDN cream. I have had mixed results (an immediate impovement  and then a dip). I will tell you how I am getting on. It's too early to say whether or not it will help me for the long term. I am also trying to taper of prednisalone, which did nothing to help me what so ever.