If working - why do I need to "get off" prednisone??

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

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/27/2009 12:17 PM (GMT -6)   
Some of the answer are obvious I guess especially if I were younger.  Prednisone at 20 mg. seems to be working so well, I feel so good, etc. etc. - give me some really good reasons for tapering and stopping prednisone.  I am starting 6MP tomorrow and more scared of that than prednisone!
ElaineNY
 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/27/2009 12:26 PM (GMT -6)   
Osteoporosis
Avascular necrosis
Cataracts
Glaucoma
Type II diabetes
Hypertension

And if you already have any of these, it will make them much worse. That's why it isn't appropriate for long-term use. We've had members develop avascular necrosis, which is extremely painful and potentially crippling, after as little as six months on steroids. It took me three years.
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.


Howright
Regular Member


Date Joined Oct 2008
Total Posts : 86
   Posted 2/27/2009 1:01 PM (GMT -6)   

 

It speeds up the aging process so you don't want to stay on it any longer than necessary.  Most doctors will only do it long term if as a last resort. 


 
Diagnosed January 07 - but realize I've been living with minor flare-ups for 10+ years. 
 
Asacol 3 pills/3 times a day.
 


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 2/27/2009 2:11 PM (GMT -6)   
That drug is just too strong to be in your body. It's not only targeting and working on your colon. A lot of other body parts are affected by it. Maybe the annoyances of things like pimples and a puffy face aren't that bad and can easily make you justify taking this drug b/c of the benefits, but seriousely consider the problems Judilyn mentioned above. I am 29 years old with oseoperosis and am doing everything i can to try to help my body rebuild bone if its at all possible in this stage of life. So please please change that mentlity.
                                                                                         
28/M/TX single parent of gorgeous 3yo girl (revised 12/12/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  Mildly Flaring 
RX/day: none! Tapered off Prednisone 9/20/08. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
OTC: enzymes everyday, turmeric, seldom use probiotics, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
Other: Prayer, food combos, good posture, chewing more, etc.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/27/2009 3:04 PM (GMT -6)   
Yeah, it has too many long term effects. You might be OK tapering down, don't worry! I'm glad it worked for you. I was so bummed about having to go back on it this week, but it seems it worked and quickly. Nipped this flare, I hope!
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 wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/27/2009 3:08 PM (GMT -6)   
pred is evil evil stuff. Its a miracle "cure" for a lot of things, but it has some seriously bad side effects, all the stuff they listed up there, not to mention horrible headaches, nausea, heartburn, sleepign problems, hot flashes, night sweats, weight gain, inabilty to absorb certain vitamins and nutrients as well.
I used to work with a guy who was, i think 34 at the time, and something happened to him and his kidneys shut down, well he had to take pred long term until theyfound him a new kidney. he had to have both knees replaced two years later because of it. that's really young for that.
6mp is scary too though, but its serious side effects are less likely..

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/27/2009 4:56 PM (GMT -6)   

Thanks everyone!  Sorry if I sounded "smug".  It was an honest question and I knew some of the answers.  However, I am 68, have bones of a teenager,  mild hypertension for years and bad arthritis.  I guess now at 20 mg. I feel so good - not just the UC you understand.  My knees works.  Today I walked the whole Walmart without pain - some discomfort is all and haven't done that for many months or years!  I have only been taking it for 3 weeks tapering from 40 mg. to 20 mg.  I have NONE of the side effects mentioned - no acne, moon face, headaches, night sweats (had them before with UC), nausea - nothing!  Just feeling great!

Can you blame me for wanting to stay this way?  Of course, I understand and will do as instructed by my doctor.  I do know a couple people who are on long term low doses of prednisone and are doing ok - not great!  I don't want it to cause any problems when I am 90 and I intend to live to be at least 90. I will only have surgery if it becomes life threatening in any way. I have energy, and yes take Xanax (have for a while) to calm me down sometimes.  I already have another type cataract that has to be removed.  The only thing I would really not want to deal with would be the painful joints and/or kidney or liver disease.  Right now they feel so good!

I am sorry - and I appreciate all the info.  I am starting the 6MP tomorrow morning as directed.  50mg. and praying I can handle any side effects.  The mesalamines made me SO sick - do not want to go through that again!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 2/27/2009 5:14 PM (GMT -6)   
I warned ya it would make all your joints feel great. LOL. But seriously you don't want to stay on it. I've been on it for what seems like forever. Am tapering now... slowly. down to 10 mg. Attempting to drop 2.5 mg every ten days. But my side effects never hit till I got to about 25 mg. Till then I lost weight had great energy... All the benfits. WHen I hit 25 I put on 10 pounds ( of the 41 I lost ) back on in about 2 days. Now I've been able to stay at just gaing back ten pounds... but with the bloating and puffing... it looks like I put back on alll 41 PLUS 10. But the scale doesn't lie. Acne has started... I mean come on I'm not in high school anymore, thought I had gotten past that phase of my life. I never got the munchies till I hit about 25mg either. Now I am starved all the time. I have to fight not to eat and to keep that scale at just putting back on the ten. So far.... knock on wood the joints have stayed feeling good. That could even be some of the diet changes I've made that has helped.
Personally I really want off this drug and to NEVER have to go back on it. Its not likely but that is my hope. And this is despite the few "positive" side effects of it.. But I figure now that I have this lovely disease that Pred may be part of my life on and off for the rest of my life.
 
38 yr old male, NE Ohio, diagnosed Aug 2008, but been with symptom since Nov 2007
30 mg pred, 9 balsalazide, rowesa nightly, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera tabs
Following gluten free diet as well as spinach/sunflower regime
**down to 25 mg of pred 12/25/08 **down to 20mg of pred 1/7/09**down to 17.5 mg 1/22/09
**down to 15 mg of pred 2/3/08**down to 12.5 mg of pred 2/13/09
MED CHANGE: 1/13/09-- 4 Lialda, 2 Pamine Forte, 1 Florajen3 probiotic, 2 Aloe Vera tabs, Rowesa every other night, 20 mg of Pred, Lomotil as needed, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol
 
 
 
 
 
 
 
 
 
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/27/2009 5:20 PM (GMT -6)   

yes, unclebubba  - you told me - wish it could stay this way.  If I can have the knee replacement, that would be wonderful!

I wish I could take the maintenance medications you and many take - like Lialda and Asacol.  I definitely would prefer that to 6MP and prednisone of course.  I have been at 20 mg. for one week and so far ok!  Hey, one day at a time.  My skin is so much nicer, etc. etc.  Lower back and tailbone aching seems to be the worse thing and energy and lack of joint pain the best.  Hoping the 6MP does not makes things so much worse - I am just not ready for that!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 2/27/2009 5:22 PM (GMT -6)   
hope everything goes well for ya. For me, I believe the spinach sunflower seed diet has allowed me to start to taper off the Pred.
 
38 yr old male, NE Ohio, diagnosed Aug 2008, but been with symptom since Nov 2007
30 mg pred, 9 balsalazide, rowesa nightly, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera tabs
Following gluten free diet as well as spinach/sunflower regime
**down to 25 mg of pred 12/25/08 **down to 20mg of pred 1/7/09**down to 17.5 mg 1/22/09
**down to 15 mg of pred 2/3/08**down to 12.5 mg of pred 2/13/09
MED CHANGE: 1/13/09-- 4 Lialda, 2 Pamine Forte, 1 Florajen3 probiotic, 2 Aloe Vera tabs, Rowesa every other night, 20 mg of Pred, Lomotil as needed, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol
 
 
 
 
 
 
 
 
 
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 18, 2018 6:09 PM (GMT -6)
There are a total of 3,004,435 posts in 329,145 threads.
View Active Threads


Who's Online
This forum has 161738 registered members. Please welcome our newest member, Rosheen.
198 Guest(s), 10 Registered Member(s) are currently online.  Details
goshawk, SoMuchFun, JoHnGaMeR90, island time, 3timechamp, Blue Roads, slapshot, mareish, Woodduck12, Korissa