Vent: off pred 10 days - having issues

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/25/2008 10:09 AM (GMT -7)   
I stopped my pred from 5mg on August 15.  On the 14th I had an urgency issue - which I blamed on IBS...  Perhaps I was in denial?  Today another.  The past few days I've had cramping and twinges with a squishy feeling.
 
I had really hoped that the Remi would take care of all of this.  I was feeling pretty well while on Remi and 15mg pred.  Did okay on 10mg pred.  I can't stand the side effects of the pred - so I really don't want to try that again.
 
I haven't yet called my doc.  I need to as I think I'm about due for blood work.
 
This is really not helping my attitude.  I've been feeling as if I hate the world and it hates me lately.  I like to be around my friends, but other people irritate me beyond belief.  And noises!  Oh, some of them will send me over the edge!  I'm not sure why...  I know I'm having some lady problems since coming off the pred - this is a usual thing for me - but uncomfortable!  I'm tired and therefore cranky.  I feel fat and stepped on the scale last night and that didn't help.  After trying to watch what I'm eating and hoping it was pred weight, I'm feeling upset as the numbers are just going UP :(  It's been REALLY hot, which my body doesn't like.  (How am I supposed to know what is what?!?!?  Is it IBS?  Is it IBD?  Is it just the weather?)  Having these weird bowel feelings is making me second guess everything I do and has me on edge waiting for the next weird twinge.  I'm about ready to dig a deep, dark hole and have my pity party there...
 
My next Remi infusion is on 8/12.  Ideas?
 
Vent over :)  Thanks for reading!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 7/25/2008 10:16 AM (GMT -7)   
Hey Dawn, vent away! I do remember having those urgency feelings too and sometimes I still do. Have you tried some Rowasa's to get you over the hump until your next infusion? I've heard some say that helps. You are probably experiencing the withdrawal from the Pred right now plus the female stuff is most likely adding to the cause. Take care and would you happen to have any room for me in that Pity Party hole? :-)

Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/25/2008 10:40 AM (GMT -7)   
when I get my period I usually get a little diarreahey. try to be positive (I know how hard that is), see how it goes after your next infusion, it can take a little while, right?

I hear ya on the pred weight gain, while I am eating I think about what I can eat next, it is horrible. You will lose the pred weight.

take care, I hope you feel better very soon!
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 25mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5151
   Posted 7/25/2008 11:02 AM (GMT -7)   
It might have helped you to get down to 2.5 Pred before stopping it completely. I had to do that & then use 2.5 as a kind of "band-aid" occasionally over 2 months before my UC accepted 5-ASA management. (My gastro was interested to hear that the strategy worked!) So-- I can understand why the twinges & some urgency unnerve you! Just make sure you're doing the daily routine right-- getting enough rest, reasonable diet, etc., schedule bloodwork & hang in there. Hot weather, especially with high humidity, can wipe out even healthy people so that could be impacting on you, too. Be sure to stay well-hydrated. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 7/25/2008 11:52 AM (GMT -7)   
I think it's just stopping the pred at 5mgs....I've always had to do the 2.5mgs/day for a week or so, then the last time I tapered I did 2.5mgs every other day for another 10 days! Much as I hated it, I was scared to go off it. But it did enable me to get off it without too much trouble. Yes, try enemas until your next infusion- hopefully they'll get you thru the pred withdrawals. Do you have the steroid enemas? They may work better than Rowasa. As far as your moods go, stay home as much as you can, in your quiet peaceful house! Do you have AC? crank it up! and you will lose the pred weight! I'd use the enemas for an week, nightly, see how they go, & if you are still having twinges & urgency, then call your doc.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 7/25/2008 12:17 PM (GMT -7)   
Ugh-I am so sorry you are having these issues. I know I am new here, but I can completely relate to everything you are saying! As i am tapering off (I am down to 12.5mg now), I worry about every twinge or feeling, and this hot humid weather isn't helping AT ALL.

I just had my first period (this past week) since starting on pred, and things were definitely looser and I was much more bloated and uncomfortable. I was so worried it was the UC flaring up, but since AF has gone away, things are better again.

Some days, it is just so hard to be positive. You feel like the world is against you. Here is a big virtual ((((((((hug))))))))) to you. I wish I had advice or ideas, but all I can say is I am here for support if you need it and I completely understand where you are coming from!
Laura
 
33 years old, stay at home mom of 2 girls, ages 3 and 21 months
 
Diagnosed in 2007
Currently on:
Prednisone 15mg/day and tapering-UGH
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/25/2008 5:08 PM (GMT -7)   

Tapering off pred can have the EXACT symptoms of a UC flare so my GI said.  Keep an eye on things and if they get worse call your GI.

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/25/2008 7:20 PM (GMT -7)   
I can't tell you how many times a period has screwed up any progress I was having with meds and diet. Even before I had UC, my girlfriends and I used to call that kind of diarrhea "the period craps." Ha ha!
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG (as needed).
Diet/Exercise:  Trying sunflower seed thing.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Showing improvement after a few days with sunflower seeds.
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/28/2008 6:46 AM (GMT -7)   
Sorry - should have been more specific. Not period time - I have a yeast infection from the pred. Thankfully I think a three day course of the monistat has helped with that issue.

I hope it's just the heat that's kicking my butt - and not a flare up. We were out on the boat on Saturday and there were a couple of times I thought I might have to jump off, swim away, and take care of things. Luckily the crampies went away and we had a good day on the water.

I don't have the steroid enemas. Just Rowasa. I haven't been doing well at retaining them, so I'm a bit afraid to try them - I really don't need any extra cramping! Maybe I'll try the Canasa I have left...

The period craps - that's hilarious!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5151
   Posted 7/28/2008 7:29 AM (GMT -7)   
DG-- I doubt that 3 days of Monostat is enough to wipe out yeast, which tend to be very pesky. Beware! (Good luck!) / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/28/2008 12:21 PM (GMT -7)   
Thanks for the warning Old Hat. I was wondering about that... If I still feel symptoms of it tomorrow, I'll pick up another course.

Another wonderful side effect of that nasty pred :(
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5151
   Posted 7/28/2008 2:59 PM (GMT -7)   
My old gyno, in practice since the 1950s, always recommended 14-day treatment of yeast. (That's a week more than the prescription drugs listed!) And this was a conservative doctor who didn't overmedicate. / Old Hat
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, February 20, 2018 1:03 AM (GMT -7)
There are a total of 2,931,105 posts in 321,598 threads.
View Active Threads


Who's Online
This forum has 160335 registered members. Please welcome our newest member, Mrjambu61.
260 Guest(s), 0 Registered Member(s) are currently online.  Details