Interested in LDN

[Dogluv]

Hi, I'm very interested in starting LDN im currently going through a flare, and trying to find a drug thats not an immunosuppresent, that would be just as effective. I tried prednisone and had a bad reaction, with hives, a swollen face and neck, and I got very itchy, so that's no longer an option. I'm mentioned LDN to my doctor but there's not many studies to back it up, so I think he's reluctant to try it. I think it's worth looking into though it seems like a good option.

Here's my list of questions:

How long does it take to work?
What are the side effects?
What's your dose?
how did you get your doc to let you try it?

 

[Kev]

Hey dogluv

I kept a diary of my starting on LDN. Its titled LDN and me, a personal diary. You should be able to find it in the Treatment section (Why it's not in the LDN section I'll never know?)

Side effects (for me) was the occasional vivid dream, but they soon faded away. Aside from them, no side effects. Nada! Zilch! And I've been on it daily since November of 07.

My dose is 4.5 mg. That was the dosage used in the original Penn State study that Dr Jill Smith did. I've heard of people going lower, but I don't know if the lower doses work.

I took a printout of the above study, the name of a Canadian compounding pharmacy & the name of a US doctor who consults via telephone to my GI. She looked at the study (she went through the entire study posted in the American Journal of Gastro-eneterolgy) and agreed to put me on it AND convinced a local pharmacy to compound it.

It has been a success story for me since going on it; so much so that my GI placed more patients on it since. To date, all of us are doing extremely well.

 

[LittleChloe]

It took Chloe about 7-8 weeks for diahrreah and pain to completely stop. She got started on LDN one month after her diagnosis so that could be why it worked so well and so quickly for her. No side effects now. In the beginning she noticed she could remember her dreams. Sometimes she has a little trouble falling asleep but that's all we notice. She takes 4.5 mg liquid form at night. Getting our doc to let us have it was tricky. He wanted her on 6mp. I learned all I could first, then I printed out the studies. At her first follow up after her hospital stay I brought it up as something we really wanted to try. I tried hard not to be demanding but just basically pleaded with him to let us try something first that wouldn't hurt her. He was tormented because although he had heard of it he did not know how it worked and had never prescribed it. He's a pediatric GI and I think they are especially conservative. He said "I've never done this before and I'll just be kicking myself if something happens." I promised him we would watch her carefully. To my shock he agreed. Like Kev said be prepared with the pharmacy because our doc asked us where to send it. Very best wishes to you, I hope you get it!

 

[SnowDay]

Hi, I'm very interested in starting LDN im currently going through a flare, and trying to find a drug thats not an immunosuppresent, that would be just as effective. I tried prednisone and had a bad reaction, with hives, a swollen face and neck, and I got very itchy, so that's no longer an option. I'm mentioned LDN to my doctor but there's not many studies to back it up, so I think he's reluctant to try it. I think it's worth looking into though it seems like a good option.

Here's my list of questions:

How long does it take to work?
What are the side effects?
What's your dose?
how did you get your doc to let you try it?

Hey dogluv. As I mentioned in the other thread, it seems like it comes down to how open to experimenting your GI is. I think, though, that if you throw a bit of a tantrum, that your chances of your doc relenting will greatly increase. Just be really firm and let him/her know that you know that it's your body, and you're the one who's going to decide what's best for it.

To your other questions:

How long does it take to work?

I think that like most things, it's different for different people. But the standard is 4-8 weeks, as far as I know.

What are the side effects?

None for me, so far.

What's your dose?

i've been taking it for nearly 6 weeks (4 weeks at 3mg/day and the rest at 4.5), and although it doesn't seem to have properly kicked in, I think it may need more time.

how did you get your doc to let you try it?

I just asked my doc if she knew about it, she said she had and that we could try it out if i was comfortable, I was keen to cos of the good feedback i've gotten from it off this site (mainly from Kev ).

Good luck.

 

[Dogluv]

Thanks so much for all the information, its really helpful to hear about everyones personal experiences, and the more I know, the more I really want to try it. The side effects seem extremly minor compared to those of an immunosuppresent, vivid dreams compared to increased risk of cancer! Littlechloe my doctors also a peds they are definitely more conservative, so it will take some Begging and a bit of a tantrum like everyone mentioned (probably from my mom though lol)
kev I read your diary about LDN and Chloe and snowdays as well and that's what made me decide I really want to try this. Im definitely going to give him the studies (my doc loves studies, as I'm sure all do) I'll keep everyone updated on what my doc says, how I'm doing, etc. Again thanks for the responses, it's really helped me!!!

 

[hainman]

hi snowday.im interested in this treatment to but my GI isnt to keen even though i gave her a link to detailed study and info,think because it isnt approved in scotland yet by the powers that be they dont want to touch it,i was actually approached by my daughters GP about it.thing is do i need to be off everything that im on right now??ie mercaptopurine,asacol??how much do you pay for it ?

 

[Kev]

Hainman I don't know about mercaptopurine, but as for asacol, I've been on Salofalk (another form of asacol... 5-ASA) since the beginning, and it didn't interfere with my taking LDN.

 

[hainman]

thanks kev im due to see the specialist again next month so if he sarts his shite again about my last option being bowel removal i'll be telling him im going to try ldn first,only bugger is having to pay for it as its not on nhs prescription here in scotland i dont think...

 

[Kev]

Hey Hainman

It isn't covered here either, because it is a custom compound and isn't given a standard DIN (which I 'think' stands for Drug Identification Number... anyone with info on this please feel free to jump in) because it use in that particular dosage hasn't been approved by any regulatory agency. I pay about $1 CDN per pill... but at 1 pill a day, I could care less. The adverse reactions/side effects of the traditional drugs that most folks take for IBD scare the bejeepers out of me. I've had one bad reaction to AZA, that was enough. I'm of the opinion that once enough people try it successfully, and it gains general acceptance; then maybe one or more of the big private insurers will fund a study and get it approved. Considering what they are shelling out in coverage for the 'traditional' drugs, it would be in their best interest to find a cheaper yet safer alternate.

 

[Bec215]

Thanks for sharing your story - I'm going on 30 years diagnosed with Crohn's, and UC diagnosed in 2007, and after 2 resections, I've hit the first flare that I simply cannot kick... going on 4 months now. Maddening.

Anyway, I started looking at LDN therapy. Azathioprene/Imuran/6-MP are all immunosupressants, but the studies of LDN therapy are about BOOSTING immune system function. So I doubt you can take LDN therapy as well as 6-MP, as they would seem to cancel each other out.

That's my fear right now about switching - I read you have to be off your immunosupressant therapy about 4 weeks, and it can take 2-3 months for LDN therapy to kick in, which means potential misery for 3 months if you're in an active flare.

If anyone has made the switch from Aza or 6-MP to LDN while having a flare, I'd really like to hear your experience!

 

[hainman]

hi kev,
i seen somewhere that they were putting it in for tests to get approved over here but could take some time though.just need to speak to the specialist and see what he has to say....he has pointed in the direction of bowel removal everytime i have met him altoughfor over a year now ive had apps cancelled just before i was due to see him....f***ing raging is an understatement!!!!
anyhoo i'll know more next month.