At a Crossroads in Treatment

italo,

Wonderful news that you feel LDN is helping you.

Just started LDN last week and I believe it's helping with healing and reducing my frequency. I'm 95% to being back to normal based on symptoms. The key therapies that got me there were rectal therapies, VSL#3, diet changes, and LDN. The key actions that made a difference for me were - accepting that I'm going to have thing for the rest of my life and it wasn't going away, taking control of my treatment and not relying on one doctors suggestions, learning everything I could from others / resources about treatments & causes, and knowing that I'm not alone and have a lot of people willing to offer help and support.

Yes, that's pretty much the way it is: learn acceptance, make necessary diet modifications, and supplements, and LDN. We're definitely here to help you.

 

Thanks lookforcure. Are you taking Mutaflor now? How did it help? Did is stop bleeding?


Italo
I know that doesn't happen to everyone but that is why I fear this drug. Is the liver thing better now or are there lasting effects? When did you get your first bloodwork done after starting? Did you go up to 75mg because sxs were still not in control? Are you still glad you tried it? I can't take Mesalamine so I have limited drug options. Already done a ton of diet modification and have been on LDN since Jan. Trying to make a decision on 6mp now. Thinking I will probably do it, but still haven't. I am down to 20mg of Prednisone, sxs are better but there is still blood. On the fence about letting LDN work (works better on lower Prednisone) or starting 6mp before I flare worse on the taper. I know it takes a while to kick in so I know I have to figure this out. I am prone to nausea anyway so I fear that part.

seasons21 - I was definitely an exception when it came to 6mp and azathioprine. My GI had people get the nausea but not the liver toxicity. My liver enzymes went back in the normal range within 5-7 days after stopping the azathioprine. I had the first blood work to see if I would metabolize the 6mp right when I started. 30 days after starting, I had another set of tests to check my liver, blood counts, and to check my therapeutic value. After being at 50 mg for 2 mths, my GI upped me to 75 mg to try and get me in the therapeutic range. My white blood cell counts were down as intended, but I was not seeing any symptom benefit. It was about 2-3 weeks after that, that I got sick from it. It supposedly takes around 3 months to see the benefit of 6mp and I started when I was tapering of Prednisone. At the time, I was reluctant to try it, but figured I could always stop it if it caused a problem. It has a very short half life in your body (just a few days per my GI). The liver toxicity is the key thing to have monitored. I know you said you can't take mesalamine, but have you tried the rectal delivery? Very little is absorbed thru the colon when taken in that manner. I tried Canasa first & then went to the enemas. Didn't think I could do either of them but now its just routine. I had really bad tenesmus and the Canasa did away with it. If I have any alcohol and anything with sulfites (balsamic vinegar, wine, beer, torillas) I will see blood within 2 days & it takes me 10 days to recover.

InSoFla, the people have spoken, good to see you back here

Hi Seasons,

Yes, the timeframe is a big part of my decision. After being in this flare for 4 full months and with all the side effects of the pred I can't wait for another 2-3 months for the 6mp to work. Also, I seem to be so sensitive to medication so the trouble with liver toxicity concerns me. I discussed all of the risks with my new GI and he felt that in my case Remicade was a better fit. I would need less monitoring and I will hopefully see results faster than with 6mp.

You have to understand that the prednisone has turned my body inside out! For the past four months I have been so lethargic and suffer terrible headaches, body aches and joint pain. Each time I taper my symptoms reappear and I have just reached the end of my rope. If I had been offered 6mp months ago I would have taken it. However at this point, after discussing it at length with my new GI, I feel that Remicade is my next step.

I know that you are going through this tough decision as well. Take some time and ask your doc for the reasoning for choosing 6mp first over Remicade. I went to my GI's office with a list of questions and quizzed him about everything. When do you plan on starting? Make sure that you keep up with the monitoring of your blood work and liver tests when you do.

ManhattanMama - I have pancolitis. When I was diagnosed, I was having 4-7 very loose movments/day with blood. It progressed to full out crimson red unstoppable diarrhea with cramping, really bad tenesmus, and wicked high urgency. It took 14-15 months get things settled down, but 20 months later, my symptoms are 4-6 well formed movements / day. Prior to colitis, my normal was 3-4 movements / day. I have no cramping, no rectal pressure, very low urgency, and only rarely will see any small trace of blood (usually occurs if there is any pressure or hard pushing). Asacol, a few prednisone tapers, Canasa, enema's, lots of VSL #3, supplements, meditation, and lots of experiments/changes to my diet got me to this point. So far on the LDN, and its only been a week, my frequency in the past few days has been averaging 4 / day. Prior to starting LDN, I considered myself pretty close to remission, but would sometimes have loose movements and sometimes my frequency would go up. I figured I still had patches of inflammation. I was looking to LDN to help with healing and give me more consistency. I'm looking for it to compliment my therapy vs looking for it to replace anything. I continue to take Asacol (4.8g/day) and a nighty mesalamine enema. If things stay like they are, I may cut back on the enemas to every other day, but I'm going to give LDN a solid 2 months before I change anything. I take it orally based on my GI's recommendation. He felt the oral would give me a more accurate and consistent dosage. He also wanted me to start out at the 4.5mg vs titration because he felt the risk of side effect was minimal and to see a benefit I had to be at 4.5mg. So far, I've had no side effects, in fact, it has caused me to sleep a little better. I hope this is helpful to you. Stay strong, keep asking questions, keep trying things, and I'm hopeful you'll find the combination of things that will work for you.