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No more LDN for now

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Crohn's Disease
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Posted 1/4/2011 1:59 PM (GMT 0)
Happy new year all. unfortunately, my son has decided to come off of LDN. although his CSR was down, it was not enough of an improvement to keep going. He has decided to go with Remicaide. His GI would like him to take part in the Cimzia trials, but we aren't willing to put him through  all the hassle, with there still being a chance that he would get a placibo for 4 weeks. Plan? Remicaide for a couple of years and back on LDN when he is in remission. We'll have to see.
Posted 1/4/2011 2:32 PM (GMT 0)
Good for your son for being able to make a decision like that, I know it can be very hard to make a decision when there a multiple people throwing ideas at you, I'm currently taking Humira and LDN, hoping that in the future I can stop Humira and just rely on the LDN. So I think your son's plan sounds like a good idea.
Posted 1/4/2011 2:34 PM (GMT 0)
Comedybob you do know that Remicade is generally a drug you do not stop once you reach remission, right?? Some are able to go back onto Remicade after they have stopped it, but its generally recommended you stay on the med until it stops working for you. Its not a med to start, stop and restart generally. Just wanted to make sure you understood this. Hugs!
Posted 1/4/2011 5:25 PM (GMT 0)
Hi Gail
yeah, we know that. we also know that the chance of side effects increases over time with any medication. Our GI knows that we are trying to spend as little time as possible with him on agressive meds. He has told us that LDN tends to work better once a patient has reached remission. we have at least two years(if it works) before we have to consider options again. thanks for watching out for my boy. I appreciate it.
Posted 1/4/2011 5:33 PM (GMT 0)
sorry this didn't work out for you and your son. I am glad that you have a plan going forward, tho, and I hope he feels better soon.
Posted 1/4/2011 7:16 PM (GMT 0)
Sending healing prayers your son's way that the Remicade does the trick for him:) Hugs to you both!
Posted 1/5/2011 4:16 AM (GMT 0)
Good luck and thanks for keeping us posted! I, too, hope the Remi does the trick.
Posted 1/6/2011 1:47 PM (GMT 0)
Well, we hope that this will be the magic bullet, and I will definately post on the progress
Posted 1/6/2011 4:21 PM (GMT 0)
Good luck to your son. Remi was my miracle until I developed antibodies and had to quit. Since then new GI has been going old school with sulfasalazine -- works well enough I'm holding off on more agressive meds until needed.
Posted 1/6/2011 4:51 PM (GMT 0)
I just want to second Nanners' comment about not stopping Remicade until it stops working for him. It's years down the line to make that choice, but I stopped it when I needed it every 4-5 weeks because insurance wouldn't cover it. Now, in my doc's words, I will "never see that med again." I quit it for about 6 months to try Humira. When I re-introduced the Remicade, I got hives in my mouth.

On the bright side, it's a great drug and I wish him the best of luck on it. Hopefully it will take him into a long and happy remission. BTW, Remicade was my magic bullet... (til I quit it)
Posted 1/6/2011 5:09 PM (GMT 0)
Best wishes that it works wonders for him. I too had great success with Remicade, it gave me several years remission while I was in college which was wonderful! I only felt like I had crohn's when I had to go for my treatments! I was lucky enough that I responded so well I was able to start spacing my treatments out so I took about 1 less a year. I was doing so good at every 8 weeks, that we slowly spread it out, every 8 1/2 weeks, every 9 weeks, until I was only going every 10 weeks (doc didn't want to space out any further).

Comedybob, I also just recently stopped LDN. Just curious did your son notice any difference when he stopped? Good or bad?
Posted 1/6/2011 6:55 PM (GMT 0)
CCPG- funny you should ask, he says he hasn't had even a twinge in the last week. other than weight and markers, you'd never know he was sick
Posted 1/7/2011 6:52 PM (GMT 0)
HI,

I am on LDN, which is helping a lot, and was looking at going on Humira to see if it would rid me of a fistula.

I got in touch with Dr Zagon, (Penn state U. where they are doing the studies) when I read that someone was taking both LDN and Humrira

Here's what he wrote back to me.

"Querry re: LDN and Crohn's


On Fri, Aug 6, 2010 at 7:46 AM, Ian S. Zagon <[email protected]> wrote:

Dear Ms.
Do not get off of LDN - there is no problem with Humira or any other medication except chronic use of opioids for pain - and that is not your problem.
3 mg/day LDN; night or morning (it will make no difference).
Buy the LDN from Skip's Pharmacy in Boca Raton, FL (on the web). They have a good "filler" for the LDN.
LDN should do very nicely for Crohn's. I will send you a paper about it.
Good luck.
Dr. Zagon
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