Off LDN (Low Dose Natrexone) for now

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therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3605
   Posted 5/4/2009 1:39 PM (GMT -6)   
I really haven't seen an improvement in my bm's or gut since starting LDN. I'm on Cipro now and feel good about the 3rd day in. No bleeding and only bathroom trip is has been in the am the past two days. I'm on Cipro just until Weds again so we'll see how I do being off it. LDN has gotten great reviews for those with Chron's and some with UC. I was on it for 3 full months. I will keep you posted as my state when I come off antibiotics, that's all I'm taking right now for my UC.
Very mild left sided (could have fooled me with the "mild")  UC. Started LDN ON 1/25/09, stopped LDN on 5/1/09 didn't seem to help. Supplements: Probiotics, Cipro antibiotics 4/29 for 8 days seems to be helping, no bleeding right now.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/4/2009 1:56 PM (GMT -6)   
My GI said that a small percentage of people with UC are helped by Cipro or Flagly. Maybe you're one of those small percent. At any rate, I'm glad the Cipro is helping!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3605
   Posted 5/4/2009 1:57 PM (GMT -6)   
Well at one time I was on Cipro a couple of years ago and I thought I was going to die from it b/c I was having diarreah the whole time and my uc was not getting any better. My NP said witht he bacteria imbalance that I have in my gut, maybe this round will work better. I'm praying so. Thank you.

Very mild left sided (could have fooled me with the "mild")  UC. Started LDN ON 1/25/09, stopped LDN on 5/1/09 didn't seem to help. Supplements: Probiotics, Cipro antibiotics 4/29 for 8 days seems to be helping, no bleeding right now.


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 5/4/2009 5:23 PM (GMT -6)   
I'm sorry that you didn't have better luck with LDN.  I think it's great to try every option but it's very disappointing when the next option doesn't work.  I get so tired of spending money on the latest thing to try.  Even though LDN didn't cost that much it still added up after having the phone consultation.  Oh well, I could never resort to surgery unless I knew in my mind that I tried every option. 
 
I had those horrible joint and muscle aches when I was on it.  They're pretty much gone now.  I still get occasional stiffness but I know for sure that the way I was feeling was a result of the LDN. 
 
Good luck with the Cipro!!!
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
Lialda, 6MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 5/4/2009 10:27 PM (GMT -6)   

Sorry to hear that the LDN wasn't the miracle drug that it claims to be for you.  I agree with glamourgirl though...better to have tried and then ruled it out.  You never know when something will help your case of UC, even if others claim it is wonderful.

I haven't been on the board much lately, mainly because the LDN is working for me.  Since starting it I've seen reduction in number of bms, no ribbon stools, and have been feeling better in general.  I'm still taking Lialda along with the LDN plus all the supplements my naturopath doc started me on.  So who knows if it is the LDN or all the other stuff I'm taking now.  Regardless, I'm feeling like a normal person again, and if I could get rid of my constant exhaustion (which I've had since being dxed with UC a couple of years ago) I'd be 100%.

I hope you find something that helps you reach remission.  This disease really wears a person a down.


 
36 y.o. male
Diagnosed w/ UC in May '06, had symptoms since '99
Meds & supplements: LDN 4.5mg, Florastor, Lialda, Allegra, multi-vitamin, buproprion, fluoxetine, vit E, D, and zinc.
 
Eating a low sugar and wheat, and no dairy diet.


Suki2008
Regular Member


Date Joined Oct 2008
Total Posts : 27
   Posted 5/6/2009 2:13 PM (GMT -6)   
I am just about to embark on LDN, under the guidance of Bob Lawrence, here in the UK. I have been on Azathioprine 150 mg. The results are outstanding with joint ache being the only remaining sign of my UC. However I don't fancy being on a dangerous drug like Azathioprine for the rest of my life. I am getting some hair loss and of course there is an increased cancer risk.

I am sorry LDN hasn't worked for you yet, but, I agree with glamour girl, you should try everything.

By the way my consultant said that if I go on LDN, which not NHS approved, and it doesn't work then I may find that Azathioprine doesn't work so well if I have to go back on it. Is this a red herring or is she right?
DX Sept. 2008 aged 45. Moderate / Severe pan UC; Prednisolone tapering from 80 to 20 mg; Asacol stopped after elevated enzymes indicating hepatitis. Excellent improvement followed by deterioration after Asacol stopped. Consultation due 29.10.08. Reflexology was waste of time. Azathioprine 100 mg since November 2008. Prednislone tapered off. Reduced symptoms, but not good enough. Still get to the gym. Probiotics, Aloe Vera, peppermint oil, a low GI diet, high roughage and a protein supplement since DX. Azathioprine increased to 150 mg 21.01.09 with predifoam included. Surgery hinted at. Colonoscopy due 11.02.09. But, wait! Excellent improvement since increasing TNT roughage supplement 23.1.09. Most symptoms have gone. darn! Symptoms have returned.


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3605
   Posted 5/6/2009 2:27 PM (GMT -6)   

you should register for the yahoo low dose natrexone forum group, they are excellent with all questions or you may want to call Skip's pharmacy in Boca Raton, Florida he's is excellent to run questions by also. I wish it worked well for me. I've been pounded with LDN is the greatest thing to be on that I felt bad getting off of it, thinking, was 3 months a fair shot. I think so. It's hard to say. I went to a allergist and he said people aren't saying it's the great think next to sliced bread, it's just ok. Now there Miss on this forum who has had great results and I think some others, just for me there was no difference in my stools, bleeding or otherwise.

Good luck I hope it works for you!


Very mild left sided (could have fooled me with the "mild")  UC. Started LDN ON 1/25/09, stopped LDN on 5/1/09 didn't seem to help. Supplements: Probiotics, Cipro antibiotics 4/29 for 8 days seems to be helping, no bleeding right now.

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