Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Got a ticket for the LDN bandwagon!

My GP just wrote me a script for LDN!!!!!!!!! I just have to get it recompounded to 4mg tabs, and stay off t3s/opiods for 48 hours, and I'm good to go!

I'm a bit stunned. I've been trying to talk my rheumy into writing me a script for some time. I'd basically given up on the idea, but brought it up casually in conversation today with my GP anyways, and he thought it was a great idea. (???) He looked it up a bit while I was there, and agreed I really don't have much to lose by giving it a try, and figured it would be a better drug to try before going to other anti-TNFs.

So, I'll be adding LDN to enbrel (which isn't working so well for me), prednisone (which unfortunately works too well for me), and plain old tylenol. As well as going back to NSD.

Wish me luck!!

And HUGE thanks to Bridget for sending me all sorts of links and articles on LDN!!!

Best wishes. I talk to my new Rheumy on my regular appointment next month. He is new as my old one left to take a new position in another town. She was great and I will miss her. First meeting with new doc and I am going to discuss going off label with a drug LOL geez

I may go the GP route as well. and again good luck

Oooh good luck with this Megan!! It sure sounds worth a try.

I actually printed out a few of the abstracts I could find on LDN (re:Crohns) to show my Rheumy, just a few weeks ago. I asked her if she'd ever heard of this being used for treating AS, told her very briefly about Bridget's experience, asked her if she thought it was crazy and... nope, she never heard of it being used for AS, nope she didn't think it crazy she thought it was 'interesting' and then asked..."Are these for me?" referring to the printouts, which she now has in her hands. She is one busy researcher so I've no idea if she will ever look into it but ya never know.

Cheers of good luck Megan, I sure hope it helps!
mig

Megan....I'm jealous
I've been thinking about mentioning it to my doc but we all know where that has gotten me lately. She has other AS patients so I think I will make a copy of some info for her if she hasn't heard about it.
I think I would like to give it a try. Percocet is all I have to help my pain and I take it very very rarely....found out yesterday that it doesn't even touch the pain anymore.

Good luck Megan, I'm excited for you

Sherri

SCHWEET!!! *high five*

*hughughug*

I hope (SOOO hope) you get as much good out of it as I have!!! (do wish he could've rx'd it BEFORE your vacation, though . . .)

KEEP US UPDATED!!!

YAY!!!

*hughughug*

-Bridge

Thanks!
Good luck with your new doc as well.

Okay, showing my ignorance here . Can someone tell me what LDN is? I want to give the to Megan, but I don't know what it is . It must be a good thing by what everyone says about it, so, Megan, tell me what it is and in advance. Guess there's a lot I don't know
Cindy

Thanks Mig. I sure hope it works too. I NEED to get off prednisone one of these days.

It's odd that my rheumy gave me a flat-out "no" after I showed him all the links, printouts, and everything I could find on it....just because there are no established clinical trials with it being used to treat AS specifically. There will probably be no clinical trials by drug companies for this because it's already off-patent, and it's cheap, therefore no $ to be made off it. If I ever do a PhD, I'll have to try this one out in a clinical trial.

I'm so happy that my GP was willing to override my rheumy's decision. Gutsy, that's for sure. Rheumy might not be too pleased when he finds out I went to a GP and did it anyway, after he put his foot down. I'm such a bad patient. I feel like I just went to mom for permission after dad said no. Know what I mean? But really, I don't think I have much to lose by trying it.

I'm glad you showed your rheumy some articles on ldn. If this works, there's hope for alot of people out there.

Hi Sherri,
I didn't get anywhere with my rheumy either.
But I guess you can tell your rheumy that ldn is being used to treat AS in Alberta now...albeit not prescribed by a rheumy. Whether it works or not is another story - keep your fingers crossed for me. It would be great if I could get better results from it than I did with humira. If it works, I could give you my GP's number and perhaps your rheumy could call him, if that helps? Maybe? It sucks that it's so difficult to try a cheap med like this. Seems that it's way easier to get hold of drugs with way more side effects like mtx and nsaids.

Bridge...girl...you are the best! Thanks for all your support. Prepare for a new wave of crazy questions from me.

I won't be too unhappy if I end up with some of those "allergies" that you seem to have come down with.