After 3 months of PRED. back to the same old same old....

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ErikAnthony
Regular Member


Date Joined Oct 2008
Total Posts : 21
   Posted 1/8/2009 10:43 AM (GMT -6)   
Well I just weened myself off of Pred. From 40mg to 30...20 10 5 2.5 and off yest. So far thank god no serious sides-effect besides feeling kind of drained tired all the time. When I was on 20mg of pred or higher my stools went back to normal and I was having 1 to 2 bm a day.
The only medicines I was taking was 1200mg of Asacol and the pred.
As I started to drop to 10 mg and below my D and BM'S went right back to the 'same old same old'
meaning I feel like the pred. was just a band-aid and once I took it off the cut just starts bleeding again like before.
So now it's about 4 months later and everything is the same. 4-6 bm a day all watery D.
My next app. w/ my GI is Jan 15th. I DON'T WANT TO GO BACK ON PRED!
But it seems like the only thing that works. then again he hasn't offered any other meds.
Is there any other suggestions? I rather just live with 4-6 D's a day then go back to that nasty medication.
It seems like a temp. solution anyway and I'm aware I can't stay on it.
Lot's of you guys told me to avoid the Pred. and I wish I listened because you were right but my doc. seems to think it's not a big deal ofcourse he's not the one taking it.
Strangely I never gained a single pound using it, actually I'm down 10 lbs. in the last 3 months.
The Pred didn't seem to cause many side-effects on me yet...I wonder now that I stopped it what may happen?
I have read some horror stories. Should I go back to 20mgs a day? I really dont want to mess with that stuff anymore...

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 1/8/2009 10:49 AM (GMT -6)   
There are other medications besides pred and asacol that you could be taking. I have been to 3 different GI's and not one of them felt that pred was a long term solution.

I am in the same situation- the only thing that works is pred at 20-25 mg. However, I also take 6mp ( waiting for that to start working), Colazal, and I have tried Remicade and rectal enemas.

What I am trying to say is;you need to try some other meds instead of relying on pred....
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


ErikAnthony
Regular Member


Date Joined Oct 2008
Total Posts : 21
   Posted 1/8/2009 10:59 AM (GMT -6)   
Yes. I agree. That's why I decided to stop that Pred. I will write down the names of some of these other meds and ask my GI about them. I just had A triple-hernia surg. Dec. 29th so and I'm all bruised up and healing slow, they think the slow healing its due to being on Pred. (fun stuff) So I have been in lots of pain hasn't been the best start to the new year to say the least. I really want to gain some of my lost weight back. My GI keeps saying I will when things get better but its been a 5 month flare and the weight keeps dropping and I'm so tired and nothing has gotten better. I had that 3 week 'remission' if that's what that was? While on pred but besides that nothing has changed and I'm losing hope. It's just so aggravating. I made my decision NO PRED ever again unless it's life or death. I'm so desperate I wonder if I should try some anabolic steroids to get my weight back. I used to be a gym rat and was in great shape now I'm A 145 LBS. bone rack with no energy. I know some of you may think that thought of anabolics sounds ignorant and foolish but I have read It may help our condition plus it can't be any worse that that nasty Pred. that the GI gives out like candy!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 1/8/2009 11:01 AM (GMT -6)   
My suggestions are to ask for mesalamine rectal retention enemas...in US, it's Rowasa. 1200 mg of Asacol daily could be upped to maybe 2400?

You could alternate your taper of pred.


You state you want to try them....unless you don't.

q
*Heather* Status..Asacol  (3 twice daily); flaring since Dec 22, tapered every 2nd nite (Jan 3)
~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 !!!
 


ErikAnthony
Regular Member


Date Joined Oct 2008
Total Posts : 21
   Posted 1/8/2009 11:08 AM (GMT -6)   
Thanks Quincy. Nice to chat with you again. I hope all is well with you. I have to admit I have the Rowasa in the closet. I tired it once made a mess and did not like it for obvious reasons. I also had trouble keeping it in.
But I'm going to swallow my pride tonight and give it another go. Now that the Asacol seems ineffective and the pred is just a patch I will make myself give the Rowasa A try.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/8/2009 11:16 AM (GMT -6)   
try corti foam...its much cleaner than retention enemas and has worked for me when the rowasa stopped and since its a local steriod its much better than oral/pred...feel better
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!
01/03/09 Trying a few new things...I'll report back after 90 days


ErikAnthony
Regular Member


Date Joined Oct 2008
Total Posts : 21
   Posted 1/8/2009 11:19 AM (GMT -6)   
I'll write that down for my app. the 15th BBC thanks.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/8/2009 1:57 PM (GMT -6)   
You're welcome...it's too bad we don't get the mesalmine foam here, but even so it turns to that nasty brown when it dries
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!
01/03/09 Trying a few new things...I'll report back after 90 days


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16285
   Posted 1/8/2009 2:16 PM (GMT -6)   
It sounds like maybe you would benefit from getting a 2nd opinion. If you don't like the way your GI is handling your situation, see someone else! I agree with you about the pred thing, Id rather go to the bathroom 4-6x a day than pollute my body with chemicals. That is just me though. Of course there is a point where I would have to opt for the drugs over the toilet trips. I consider myself lucky that the Asacol ive been taking has reduced my bathroom trips enough to make me able to live my life fairly normally. A few weeks ago I would have done anything the GI recommended to stop my constant cramps and running to the toilet. I don't need to be in "remission" as long as I am feeling well and I am not spending too much time on the toilet. I have been trying to eat healthier, avoid corn containing products and increase my intake of high iron foods... You have to find a balance that works for you. Don't feel obligated to continue treatment with a GI if you don't think s/he is taking you in the best direction to heal your body. Goodluck and stay healthy.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)

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