20mg of Pred. and still bleeding do U taper? I tryed new home remedies am I making this worse?

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mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 1/2/2009 8:17 AM (GMT -6)   
Hi Everyone,

I will call my doctor on this but I'm curious about your experiences. I've been taking Prednisone 20mg this past week and my bleeding has not subsided. Does it make sense to go down as my doctor originally suggested or am I going to have to go up cause the bleeding is not gone:(

P.S. I'm also doing the steroid enemas nightly:( My rowasa ones did not seem to help and my doctor said to do what I felt was helping.

In the beginning (for 3 days I tried cabbage, pear, and carrot juice in different amounts and that definitely did not work. I got worse. Duh on my part I was just desperate.

I then tried a probitic enema mixed with tap water. The next day (yesterday) I felt a little raw down there but I saw less blood so I thought it was getting better. Last night I could not hold my steriod enema so I ran to the bathroom and when I did the toilet was just filled with blood! Now I am concerned that my doc is going to make me go up in dosage instead of down:(
Female Currently Breastfeeding
In a flare since beginning of December 08
Left-sided colitis diagnosed at age 28 in 2001
Asacol 4 pills 3 times per day
Hydrocortisone and Rowasa Enemas as needed
20mg and tapering for my flare
Prenatal vitamins


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 1/2/2009 8:29 AM (GMT -6)   
     You had better check with your pediatrition about your meds and if they can affect your baby while breast feeding if you haven't done so already.  Is 20 mgm the dosage the doctor started you at on the prednisone or have you started at a higher dosage and down to the 20 now?  If he started you at 20 and you are still bleeding (as in my case when my doctor started me at 30), you most definitely should be at a higher dosage of the prednisone.  Perhaps your doctor is being cautious because of the breast feeding.  Prednisone is a scary drug...good for inflammation but can cause serious side effects.  I had a bad year, seven month flare, and didn't get any relief until the doctor bumped up the prednisone to 40 mgm with a 10 mgm per week taper.  However, even that taper for some people may not work.  You may have to taper 5 mgm per week.
     I also see you take Rowasa enemas as needed.  While you are bleeding I would try to take them every night.  I know sometimes they are very difficult to retain.  Ask your doctor about Canasa suppositories.  They may benefit you if you cannot retain the enemas.  Good luck to you!
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 1/2/2009 8:40 AM (GMT -6)   
Hi there-

I am in the same situation. I am trying taper from pred. and when I got to 20 mg- well disaster... Lots of blood, pain and urgency. So I went back up to 25mg. My doctor trusts me to do this- we have talked about it.

I am waiting for the 6mp to "kick in" and I DESPERATELY want to stop the pred.

My advice: talk to the doctor- it is important that you stop bleeding. You may have to go back up on the pred.

Any feelings about taking Remicade or 6mp?

My best-
Jackie
Jackie, 43

Pancolitis, DX October 06

Lexapro, colazal 3x3, Sythroid, Protonix, Flagyl

10 infusions of Remicade- doesn't work
Severely anemic-

back up to 30 mg of pred
Added 6MP- November 25th
 
Surgery almost certain


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 1/2/2009 8:56 AM (GMT -6)   
Christine1946,
All my meds have been pre-approved by my doctors and then researched by me, but they still make me nervous.
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
In a flare since beginning of December 08
Left-sided colitis diagnosed at age 28 in 2001
Asacol 4 pills 3 times per day
Hydrocortisone and Rowasa Enemas as needed
20mg and tapering for my flare
Prenatal vitamins


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/2/2009 8:58 AM (GMT -6)   
You've probably seen me say this before, but you may want to be careful what home made concoctions you put up your rectum. While tap water is safe with a healthy colon, for one that is raw and ulcerated, it can be very irritating. Likewise, medications and supplements that are made to be taken orally may or may not be safe administered into an inflamed rectum. Just a thought.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 1/2/2009 9:20 AM (GMT -6)   
Agreed, even a fleet enema can be painful on an inflammed colon. I personally wouldn't use tap water at all.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 1/2/2009 10:24 AM (GMT -6)   
A rule of thumb about prednisone taper is this: do not taper until you are stable with the dose you are on. If you are still seeing blood, you need to stay where you are, or possibly up the dose.

I hate pred and the things it does to me. However, at times it is a necessary evil. You need to have patience. Yes, easier said than done.

Have you tried a low residue diet to help your bleeding colon? I revert to this when the bleeding doesn't stop quickly. I will only eat things that are soft and won't "scratch" my poor guts.

You are not going to see a change over night. Sorry, but it takes time.

1st step - stop the bleeding using meds and diet. After that is accomplished, you can start thinking about a taper and eating different things.

I hope you get better soon. I can't imagine flaring and having an infant!

Thinking of you!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Mild Flare
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and a probiotic
Remicade: 1st infusion 06/17/08:  Next infusion: 12/02/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/2/2009 3:01 PM (GMT -6)   
Sometimes I've been able to bump up on the prednisone for just a couple of days, to 30 or so, then back down and got improvement. This was per doctor's suggestion (for a change, I usually manage my doses myself after all this time!). But I would not taper down if I was still clearly flaring pretty bad.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 1/2/2009 3:20 PM (GMT -6)   
If you're still breastfeeding, that could be part of the influence.

You could try alternating your taper of pred.

When did you start the steroid enemas? Maybe ask the doc for the foam enemas...they'll be easier to hold in rather than so much liquid.

What probiotics are you taking?

q
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 

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