Why all the meds?

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Christine1946
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Date Joined Aug 2008
Total Posts : 5963
   Posted 9/28/2008 8:35 AM (GMT -6)   
     My husband had a good question while we were at the breakfast table this morning.  He asked me why I was taking all these meds if only the prednisone is the one working?  He has a good point.  All this Colazal, 6MP, cort enemas and Canasa....does nothing to keep me out of this flare.  As soon as I started back on the 40 mgm of prednisone, the bleeding stopped.  I still have urgency and already had four bm's today.  But at least the blood isn't dripping out my butt.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
   Posted 9/28/2008 8:43 AM (GMT -6)   
Because modern medicine is all about short term cures. Don't get me wrong, we've come a long way and overcome so much. But in centuries to come what we now call medicine will be termed as "crude and callous". There's a scene from Scrubs where Dr. Cox says "Everything we do here in this hospital is just a stall." Modern medicine is about controlling symptoms, not about cures. Thus our bedside cabinet is made up of a while pile of drugs and if that fails we cut people open. That's all that medicine tries to do and you know because of that you can't really criticise it.

D
Probiotics and maintenance 5ASA's in rectal form
 
"Whatever you do in life don't berate yourself too much nor contragulate yourself too much. Your choices are half chance. So are everybody elses'"
 
 
 
 
 
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/28/2008 8:46 AM (GMT -6)   
The purpose of the other medications is to try to find a combination that will allow you to get off steroids. With long-term use, they can decalcify and perhaps even rot your bones, cause cataracts, give you diabetes, high blood pressure, muscle weakness and, in rare cases, psychosis. The only one of these side effects that is not common is the psychosis. They have the highest rate of serious side effects of any of the drugs we use. For 4 months or less, they're relatively safe with only annoying side effects. For long-term use, they can be lethal.
Judy - Southern US 
 
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.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 9/28/2008 8:56 AM (GMT -6)   
Great to hear...I've been on prednisone with only a total of a four week hiatus....since April.  Other meds simply NOT working.  Doctor was contemplating increasing my 6MP (50 mgm) but reluctant to do so since my Amylase and Lipase levels were off the wall when I was admitted to the hospital.  He took me off the 6MP for about a month but then put me back on it.  I don't think it has "kicked" in yet, but it hasn't kept me in remission anyways for the last four or five years I have been on it.  Seems like my flares are getting closer together and lasting longer.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 9/28/2008 9:12 AM (GMT -6)   
Right now the only thing i'm on is Prednisone as well...seems to be working wonders for me. I'm finally down to 20mg/day which is down from the original 60. I still get some Diarehha but no urgency which is a godsend. I keep telling myself that who knows what we'll have in another 10 years to treat this disease. I have to go in for tests on Oct20th to see if I can metabolize 6mp since Lialda hasn't been too good for me. Prednisone works wonders but we can't use it to maintain remission :(.
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
 
Prednisone 40mg/Day- Tapering down currently.


neednewbody
Regular Member


Date Joined Sep 2008
Total Posts : 59
   Posted 9/28/2008 11:21 AM (GMT -6)   
keep in mind that the 5ASA products dont CURE a flare up in everyone, they are more to take every day to maintain a remission. So, they may seem like they are doing nothing right now, but they need to be in your system for 5-6 weeks before they start working. And, then they are really maintaining a decrease in inflammation.
Like Blood pressure pills... if you have a heart attack, they are not really helping during the attack, but you need them every day to keep the BP down. (maybe that is not a good analogy)
Every day, I contemplate stopping my Pentasa because the remicade keeps everything at bay, why take that too? (well, the remicade used to work)
Liver transplant 2004 -- liver is only healthy part of me
 
Remicade every 6 weeks - not working
pentasa 1500mg tid
palafer once daily
lomotil every day as needed
immodium every day as needed
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 9/28/2008 11:26 AM (GMT -6)   
Just read your blog Aaron...interesting.  I'm a Leo too. 
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/28/2008 11:45 AM (GMT -6)   

Not sure if I agree with this or maybe I just don't understand...

"keep in mind that the 5ASA products dont CURE a flare up in everyone, they are more to take every day to maintain a remission. So, they may seem like they are doing nothing right now, but they need to be in your system for 5-6 weeks before they start working. And, then they are really maintaining a decrease in inflammation."

Of course, we all know the only "cure" for UC is surgery to remove the colon.  It will always be lurking there.  My understanding was when I started rectal and oral 5asa medications that they would start helping almost immediately and they did in a few days and got better as I took more - but after increasing doseage to get the last bit of ulceration healed I had too many side effects and had to quit.  I tried this twice. It did not take 5 or 6 weeks to START working but probably would have taken more than that to get into remission (which is our ultimate goal, right) Remission being free of symptoms - regular BM's and no bleeding, cramping or urgency.  I was told my doc and NP that after symptoms were gone my medication doseage would be decreased but NEVER stopped t0 stay in remission.  That is my goal - hope I get there someday - seeing doc tomorrow. 

ElaineNY 


68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal tried rowasa
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 9/28/2008 1:48 PM (GMT -6)   
It's all a matter of perception of the patient and the doctor sometimes....what both may expect as success out of a flare.   Prednisone is an easy fix (don't get me wrong..it's a miracle med)...but try to get off it.

I think Christine hit it right...she's pred dependent, and I believe it narrows the ability for the other meds to do their job properly.  

It sets one up sometimes for other med failures.

If you see some symptoms as failure....you may not be giving the oher meds enough of a chance before going on pred.  How much are you willing to tolerate before calling for the pred?

But, you're on big-gun meds....if you can get off the pred and stay off, that would be best...maybe a short taper dosage over 10 days would be enough to kick-start the healing process to allow the other meds to take over.

The other options is to add steroid rectal meds/entocort..etc.

quincy


*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (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 !!!
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/28/2008 1:51 PM (GMT -6)   
Q,

Isn't Entocort more for the small intestine/accending colon and/or Crohn's?


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!

Post Edited (bbc) : 9/28/2008 1:55:03 PM (GMT-6)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 9/28/2008 2:52 PM (GMT -6)   
     I am on rectal meds too.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 9/28/2008 5:11 PM (GMT -6)   
bbc said...
Q,

Isn't Entocort more for the small intestine/accending colon and/or Crohn's?

Yes, it dispurses in the beginning of the ileum (many CDers have ileitis), then throughout the colon.  It's still an option for some UCers, Let's say who use Colazal.
There will be a new one that's specifically designed to dispurse in the colon and throughout.
 
 
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (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 !!!
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/28/2008 9:04 PM (GMT -6)   
quincy said...
bbc said...
Q,

Isn't Entocort more for the small intestine/accending colon and/or Crohn's?

Yes, it dispurses in the beginning of the ileum (many CDers have ileitis), then throughout the colon.  It's still an option for some UCers, Let's say who use Colazal.
There will be a new one that's specifically designed to dispurse in the colon and throughout.
 
 

Any idea when?
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/29/2008 1:17 AM (GMT -6)   
It has been my understanding that prednisone quickly gets things under control, but we take the other meds to help our body adjust to life with out prednisone. Think of it as prednisone being the superhero, but once the superhero is gone, we still need something to keep things in check. It is an easier transition if the superhero is still around (in a lessor role) to maintain law and order if needed, but only as a back up while the regular meds attempt to get things running right. It doesn't work well to suddenly switch from one form of therapy to another without some sort of transition period. Does that make sense?
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort retention fluid, Prednisone 15mg and tapering down


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 9/29/2008 2:09 PM (GMT -6)   
OK...but it shouldn't be a first-line med. It shuts down the adrenal gland production of cortisol...(lazy like the colon) and has to start the production of it again to match what's been withdrawn.

It's possible the steroid topicals can help ease the side effects of withdrawl.

I personally think it sets up failure of 5ASA meds...don't have proof.

The body has rebound symptoms from the pred being decreased from a high dosage. Alternating tapering works to avoid this side effect.... But in all fairness..I've never been on it, and will avoid it as long as.. well...forever.

That's why I'm faithful to my meds, oral and rectal.....what a good girl i am.

q
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (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 !!!
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/29/2008 2:25 PM (GMT -6)   
q - I certainly agree with NO predisone.  Only thing I might consider the enemas or short bursts if necessary.  I know you are faithful to your meds.  Sure wish I had some I could be faithful to.
Not sure what my doc has in mind but I will be seeing the NP Friday instead of prescribing something on the phone so I assume they have something new to present to me. 
I KNOW that 5ASA's helped and were working but I just get too sick.
Better sick a few hours in the morning with cramping, nausea, etc. from UC than sick 24 hours from medication.
ElaineNY
68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal tried rowasa
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/29/2008 2:51 PM (GMT -6)   
Corti Foam enemas have helped quite a bit and when the rpwasa/canasa didn't...I'm still not 100% (closer to 75-80%) but better: ). The foam is MUCH easier to use than the squeeze bottle types (ie rowasa etc).
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!

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