Feeling better...sort of

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

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/2/2008 2:26 PM (GMT -6)   
After a couple of weeks of some major med changes, I was really starting to feel human again the last few days.  1 bm in the morning, no urgent trips during the day, no gas, no blood or mucous.  So I've been tapering my prednisone quicker than my GI wanted.  Today I've used the loo 5 times already, still no blood, but I've also been gassy, and some mucous.  Since I haven't changed my diet much, it must be the fast pred taper.  Looks like I'll go back up in dosage and be patient.  I so much want to be off that drug!
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (down to 10mg...yay!)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/2/2008 2:30 PM (GMT -6)   
Yeah, take your time. Hopefully you're not feeling side effects by now anyway. Sometimes even when I'm tapering if I have a bad day I'll pop in another 10 mg for a day or two, then go back down. My doc suggested it.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. Use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free diet, also none of the other foods tested sensitive to (cow's milk, soy, tomato, egg white, others)
Achieved remission for the first time in many, many years! 
Replete probiotic. Slow-release iron and B-12 shots for anemia.
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 10/2/2008 3:44 PM (GMT -6)   
Brandon...what dosage did you taper to?

Alternate from what you were to what you're going to...
example:
10, 5, 10, 5, 10, 5, 10, 5, 5, 5, 5, .....

Are you still on the colocort enema? how often?

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 !!!
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/2/2008 5:35 PM (GMT -6)   
Yes, I'm still doing the colocort. I do it at night before bed, and more often than not, I'm able to retain it all night long. I started them 10 days ago.

I started at 30mg of pred for about 7 days, then dropped myself to 25 for 4 days, 20 for 4 days, 15 for 3, then 10 for 2. My doc said 15 was a good dosage to keep me at for a while last Thursday, but I lowered it myself anyway. I was hoping to get off pred ASAP so I wouldn't have to worry about the side effects. I'm fairly sensitive to the mood swings pred gives me, and I can already tell that I'm getting them. The acne hasn't started yet, but my appetite is through the roof, and I can feel my face getting rounder as I type.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (down to 10mg...yay!)


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 10/2/2008 8:52 PM (GMT -6)   
Brandon, I'm so glad you're feeling better! Hope you can get off the prednisone soon. Quincy's idea of alternating days sounds very wise. Take care!
emory
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg (or more) and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Trying acupuncture
Osteopenia and other assorted ailments


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/2/2008 10:30 PM (GMT -6)   
I'm going to take Quincy's tapering advice, but I might wait a little while before I start the taper again. I was so close to having a regular bm schedule again, and feeling normal. At least it is only a set back, and not back to the drawing board.

Heather - Is the colocort a replacement therapy for the prednisone, or is it to be used in conjunction, allowing me to taper off with less negative effects? I'm not fond of the daily enemas, but I agree that treating from both ends is the best way to combat this disease.

Emory - Thanks for the encouragement. Have you decided on your Helena trip tomorrow?
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (down to 10mg...yay!)


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 10/2/2008 11:07 PM (GMT -6)   
Brandon! My trip was today! I made it there and back, in a car with four others, without mishap. Five straight hours of meetings. My boss was so considerate -- for morning snacks, she brought bagels and yogurt. (Of course most of the bagels were covered with seeds and chunks, but still...) Such a relief to be done with it. Thanks for remembering.
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg (or more) and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Trying acupuncture
Osteopenia and other assorted ailments


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 10/2/2008 11:33 PM (GMT -6)   
Emory...great to hear your business trip went ...5 hours of meetings...long day, but without any mishaps..woohoo!!


Brandon...yes, I am thinking that the taper might go better while on the enemas, plus the alternating dosage. There have been a few on here who have tried it with success, so I keep suggesting it. Actually, it's based on a known tapering method of other drugs such as antidepressants, etc....so that's the basis of it.

Of course...later...you'll have to taper the enemas...one nice thing, you're not female and have period flare increases to deal with as well..one plus, hey?

Do 5ASA enemas not agree with you?

Hope you continue to feel well.

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 !!!
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/3/2008 2:13 AM (GMT -6)   
Heather - One thing I've noticed is that I seem to be one of the five men that post here regularly. I've gotten lots of advice about dealing with flares and pregnacy and periods, so maybe I'm destined to end up with a UC mate. Do men just not seek support, or are we just to stubborn to acknowledge there is someting wrong with us?

Back on topic, yes I'll eventually taper the enemas. To be honest, when I started the pred and colocort recently, it never occurred to me that they might be used for longer than a month. Despite past experience, I was expecting a quick fix, and then everything would be all good. Reality really upsets my fantasy life at times...

How has your little setback run its course? Are you getting back on the mend, or are you basically the same? I noticed that you take digestive enzymes, was that at the recommendation of a doctor/naturopath, or did you start them on your own?


Emory, glad to hear that you made the trip with no troubles. It is a major victory for you to have done this trip and proved that you can beat this disease, even for a short period of time. Glad every thing went good for you and you didn't have to skip out.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (down to 10mg...yay!)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/3/2008 9:54 AM (GMT -6)   
Brandon, I'm so glad you're feeling better! I know what you mean about wanting a quick fix; I was actually told the steroid suppositories would take a couple weeks to kick  in and it's been a month already.
 
I think it's just that men don't seek help as much as women, maybe b/c they think they don't need extra help or just aren't comfortable being open. Or at least that's what my psychology classes tell me. :-)
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 2 Anucort
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 10/3/2008 10:24 AM (GMT -6)   
Hi Brandon...yes, the quick fix of pred certainly can set patients up for future disappointments when trying to get off. It has its place...but not first-line.

As well...this is a life-long thing. Pred isn't a maintenance med and patients spend most of the time trying to get off, hoping and praying that their symptoms don't return.

Have you never been on 5ASA meds except for the oral Lialda/Colazal or whatever else??

Some men don't like to talk about butt problems....and certainly avoid butt meds for various reasons...

Let me know how the tapering goes.

Yep, I'm back to my norm...at every 3rd night with the enema and will be back to every 4th by this week....I guess it was some bug I ingested. Hemmies are OK...I think the metamucil is helping with that...so I'm looking forward to a "smooth" fall.

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 !!!
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, September 20, 2018 3:29 AM (GMT -6)
There are a total of 3,004,998 posts in 329,189 threads.
View Active Threads


Who's Online
This forum has 161760 registered members. Please welcome our newest member, mengshshasuxn.
238 Guest(s), 2 Registered Member(s) are currently online.  Details
VacuumCleaner, BOB 46