Saw GI today, feeling a little more hopeful

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Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 1/21/2008 3:34 PM (GMT -6)   
Well, toward the end of '07 it was looking like I was going to have to seriously consider surgery, but we're going to try a different tact.

I have been doing well since I finished the five week course of iron injections and got the anemia under control and upped the Prednisone to 40 mg a day. I discussed with my GI that the Remicade has been doing wonders, but I start to bleed a little and get some mucous and feelings of urgency after about 4 or 5 weeks. So I am going to have my next infusion this weekend, hopefully (insurance permitting, of course) which will be 6 weeks and then put me on a 6 week schedule.

A few days after the infusion we're going to start tapering me off the Prednisine, but this time, when I get down to 15 mg, which is when I start to have problems, it will be close to the time for the next infusion AND he's going to also try introducing Entorcourt to help bridge me through the Prednisone taper. So with any luck this will do it and I'll just be on the Remicade and Lialda and finally off the Prednisone in a few months. Fingers crossed.

He also did blood work this morning to make sure my iron levels are where they ought to be, I am going to have another bone scan, but I have to wait til the end of June, insurance won't pay for them closer than two years apart. GI also told me to make sure I keep up with taking a multi vitamin with folate.

So that's where things are for now; I had a really rough few months from Sept through Dec., but hopefully I'll be able to get this darn thing under control finally.

Meesh
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97;
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, was almost off, back to 40 mg; 12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran( 2/07)


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/21/2008 3:36 PM (GMT -6)   
Hi Meesh - I am really glad to hear that you and your GI have a plan you feel good about. It is very important to feel like your GI is listening to you, and that you feel confident in your treatment. Good luck with the plan, and keep us posted.
29/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 1/21/2008 5:52 PM (GMT -6)   
That's really good news, Meesh, that your doc is individualizing your treatment & trying to adjust meds in a way which helps get you over the bumps in Pred taper. It's definitely a bright note for 2008! I wish you the continuing improvement you really deserve so much-- hang in there! Do keep us posted as time allows. Are you still grooming? / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 1/21/2008 6:24 PM (GMT -6)   
Yup, still grooming Old Hat, neat that you remembered that! It's my own business, so no groom-y no money. One thing I did when I got so sick was drop all the dogs that were difficult and the larger dogs as well, so I have some pretty good days now. Mostly little easy dogs, and since I go to the dogs' houses and groom in a decked out grooming van, I also am concentrating on keeping my distances minimized. So I guess on the positive side, going through the rough patch got me to weed out some undesirable clients.

I have a really great GI, I am so glad I found him.

Meesh
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97;
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, was almost off, back to 40 mg; 12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran( 2/07)


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 1/21/2008 6:30 PM (GMT -6)   
Hey Meesh! Sounds like you have a great plan going w/ your GI. Please keep us posted!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


quincy
Elite Member


Date Joined May 2003
Total Posts : 30587
   Posted 1/22/2008 12:16 AM (GMT -6)   
Hi Meesh...awesome to hear you have a great GI...I hope you're able to get past the 15mg pred with the help of the entocort.

You're on a good path!
Thanks for giving us an update....
be well,
quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 1/22/2008 5:25 AM (GMT -6)   
meesh-
Please keep us informed on the how the Entocort goes. I am trying to get off Prednisone ( aren't we all). I can't get lower than 10 mg w/o flaring. I hope that with the 6MP I will be able to get off P. Just wondering about the entocort.

I was also VERY close to surgery; doctor decided to try the 6MP ( I know it takes a while to work) and staying on Prednisone, upping Lialda, Rowasa every night, I have been better for the past week.

Good luck

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 1/26/2008 3:26 PM (GMT -6)   
Well, had the Remicade this morning. Orders are to go from 40 mg to 30 mg of Prednisone after a few days, so I guess I'll do that Wednesday. Can't wait to get off the Pred!!

Usually the infusion nurses are aces with the needles, but I had such an early appointment this morning I think I was a bit dehydrated from overnight -- they stuck me THREE times before getting me set up. Oh well. At least I wasn't in there for five hours like the woman inthe chair behind me getting a blood transfusion.

I loaded up my Zune with video podcasts and passed most of the time watching that.

Meesh
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, was almost off, back to 40 mg; 12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran (2/07)


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 2/5/2008 7:39 PM (GMT -6)   
Per request, an update. Tomorrow morning I drop my Prednisone down another 10 mg to 20 mg for a week. After that we slow the taper down to 5 mg increments.

I have not seen blood since a day after the last Remicade infusion. My mornings are still a little rough, but nothing as compared to full flare; 2-3 BMs, mostly fully formed. Some urgency, but only rarely now.

I started taking Culterelle this past Sunday after reading about it on the board here and doing some research on it. It looks very promising. While I was at the Vitamin Shoppe I also picked up some fish oil capsules. I had been taking a multi vitamin already.

Now, if only I could stick to a more healthful diet, but the Prednisone just makes me so ravenous. When I get down to 5 mg or less the appetite gets more manageable, so it's just a matter of weeks now.

I have been here before, the true test will come when the Pred taper gets below 15 mg. That's when I usually run into problems. Keep your fingers crossed that the 6 week Remi sked and new supps help me get off the Pred this time 'round!

I find I still need my afternoon nap, but that's not too bad, I only need 45 min to an hour now as opposed to sleeping whenever I wasn't working. And I can think of worse things than cuddling with my doggies on the couch while we all snooze for a bit.

Meesh
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, starting yet another taper attempt, 1/30, 30 mg. Daily supplements: multivitamin w/folate; Culturelle; Fish oil capsules
12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran (2/07)

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