Bringing up LDN therapy to my GI for the first time.

[enumeras]

I currently live in Austin and currently have active perianal crohns with the rest of my colon removed above my rectum. My GI in Austin wants me to take Cimzia because I've tried everything else in the past with no success. I really don't think such a big drug is necessary for such a small part of my body. After reading about all the positive results of taking LDN in this forum, I brought it up to him. He said, "I have had patients bring it up to me in the office but I really don't know the first thing about it. I don't know how to prescribe it or how long you should be on it or how much you should take... and neither do any of my colleagues. We have meetings on what medications we could prescribe and LDN has never come up." Now I'm back home in NYC for Christmas and have an appt with my old GI at Mt. Sinai. I have a feeling that I have a better chance of my GI here in NYC knowing a bit more about LDN than my GI in Austin. BUT in case I receive the same response up here than I did down there, I want to be prepared with a well established argument.

Any suggestions on how I should prepare myself? Any material I should print out and bring in? What should I say to convince him?

Thx

 

[mbishop]

LDN is in the jury-is-still-out phase of still being vetted. Preliminary studies look promising - try pointing your doc to:

http://www.nature.com/ajg/journal/v102/n4/abs/ajg2007152a.html

For a decent prelim pilot study. A few other trials seem to show low toxicity and side effect profile. The medical basis is sound for having a positive impact, your doc will just want to research him or herself on PubMed to read the details.

 

[ctrl z]

Hey there...

I recommend printing out this study to give your doctor.

I didn't have luck getting my GI on board with LDN so I got mine from a DO that is known to prescribe it... so I don't have any advice on increasing your chances of getting it from your GI.

You could say that it has very little side-effects and it wouldn't hurt anything to try?

Good luck

 

[ctrl z]

By the way, is your picture of Manhattanhenge?

 

[xmdmom]

Find out if there is rush to start Cimzia or if it's possible to try a 3 month trial of naltrexone first.

 

[enumeras]

Thanks. There is a rush to start Cimzia since we wish to impede the progression of crohn's before I have to have a perm ileostomy. Of course I don't wish for that to occur, however, I am insanely afraid of biologics. But I do have Cimzia at home in my fridge already and I have home nurses calling me to start.

I do have a tendency to get all the insane side effects of meds (I am currently battling achilles tendonitis from Cipro as we speak) and my GI here knows of this extensively. He has seen all of the rare crohn's manifestations that I've had to fight through so I'm hoping that he will be open to this. I will definitely print both those studies out and present them to him.

And yes, that is Manhattanhenge

Thx

 

[JDTM]

If you're prone to all sorts of insane side-effects from various medications, you could point to the preliminary studies that indicate a very low side-effect profile for LDN, although I'm not sure how much that will sway things. I understand that your doctor probably wants to get things under control as quickly and effectively as possible, so I can't fault him for that. From my understanding, LDN doesn't always work immediately for people -- it might take anywhere from a couple of weeks to a couple of months to see any positive effects. Your mileage may vary.

I'm only about two weeks into my LDN treatment, so I apologize for not being able to comment further! (I've had some pretty wacky dreams, but that's been the only perceivable side-effect thus far.) That said, I read your story, and I wanted to ask about side-effects you've experienced from other biologics. It sounds like Remicade at least managed to put you in remission before your body eventually developed antibodies to the medication. (Not sure what the story was with Humira, but please feel free to elaborate.) It sounds like you've been through the wringer overall, and I completely understand your hesitance to try out another biologic medication. Still, keep in mind that many people have experienced wonderful results switching to a different biologic after the body develops a resistance to the first one. Cimzia doesn't necessarily doom you to a host of side-effects, and if your case is as severe as it seems, I can see why your doctor wants to knock it down ASAP. If you feel like you have the time to try out LDN, then make your case!

Best of luck and please keep us posted!

 

[Jmrogers4]

Thanks for posting links Ctrl Z. I have to agree with JDTM it does take a while for LDN to kick in my son is just finishing his 6 month on it. I know you can continue to take Imuran on it. Not that this would apply to you but based on my son's progress, I think you start feeling better after a couple of months but I think it takes 6 months to start to see some healig.n He hadn't grown nor gained weight until this last month and has grown an inch and a half and gained 6 pounds which I putting on my mommy doctor lab coat am attributing to healing in his intestines thus allowing him to better absorb nutrients.
Best of luck to you and hope if you are able to get a RX for LDN it works as well for you as it has for so many others

 

[enumeras]

Good news yall! My nyc gi went to school with dr jill! He prescribed it to me and said call back in 6 - 8 wks with results

 

[JDTM]

Nice!! Definitely keep us posted as well!

 

[Jmrogers4]

That's great! Keep us posted with results