Just got my book "Living with Prednisone"...

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Veteran Member

Date Joined Jun 2008
Total Posts : 2865
   Posted 2/21/2009 1:27 PM (GMT -6)   
I may learn more here but I intend to read it and see if I get any good ideas, etc. 
Today is start of tapering from 40/30/now 20mg.  I am please with the results so far.  A little scared of what comes next.  Many of the symptoms, especially the bleeding have gone!  I stilll know it is there - discomfort some but nothing I could not live with.  I will report anything in the book I think important or not covered here - if there is anything.
Wish me luck!
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.

Regular Member

Date Joined Oct 2008
Total Posts : 62
   Posted 2/21/2009 3:55 PM (GMT -6)   
When I was on prednisone after I was first diagnosed in Ocotber I started on 40 mg - then to 20 mg - then to 10 mg - then to 5 mg for two weeks. I was only on it for 5 weeks total and felt great while I was on it - I never had any bad side effects at all... I feel now that my taper was too fast, but I did not know that at the time... Some of my symptoms came back - mostly blood and some urgency. It was just in the past week or so that I started 5 ASA enemas that have pretty well gotten rid of my symptoms completely :) YAY!
Meghan - 24 years old
DX:  Pancolitis since October 2008
Current Treament:  Asacol (3 pills 4 times daily), Pentasa Enemas nightly
Natural Treatment: Low Residue/Low Fiber Diet, Daily Multi-Vitamins, Activia Yogurt, Chamomile Tea
Previous Treatment:  Prednisone (40 mg - 5 week taper), Entocort Enemas, Buscopan
Status:  Remission I think!!! YAY!!! And now trying to get pregnant!!!

Regular Member

Date Joined Jul 2008
Total Posts : 197
   Posted 2/22/2009 5:35 PM (GMT -6)   
Good Luck Elaine!!! Wishing you the best. I am tapering and down to 5mgs but still have blood! And I am on the 6MP. Ugh.
severe ulcerative proctitis - march 05 diagnosed
proctosigmoiditis - january 09 diagnosed
hospitalized - 3/08 for 6 days of IV steriods
hospitalized - 1/09 for 5 days of IV steriods / put on 6MP
past meds: colozol, sulfasalzine, hydrocortisone enemas, canasa, rowasa and prednisone 
current meds: 6MP (75mgs), Asacol 12 pills,  Rowasa Enema, Primal Defense Ultra Probiotic, fish oil, calcium w/ vitamin d 2x a day, prenatal vitamin & extra vitamin c and b12.

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 2/22/2009 6:10 PM (GMT -6)   
Good luck, I'm glad it is working for you. Be patient with the taper, go slow, slow, slow... if it seems you are getting worse again, stop right there for a while and don't taper more, whatever you do! I will jump my dose up and down for a while before staying down (20-15-20-15-20-15-15-15 etc). I wonder if the book says that?
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. Doing OK, but still have some bad days. 

Veteran Member

Date Joined Jun 2008
Total Posts : 2865
   Posted 2/22/2009 6:56 PM (GMT -6)   

Well, doing wonderful here and following my doctor's directions exactly - 40, 30, 20 - each one week - then call and let doc/NP know what is going on.  NP (she is wonderful) said call after 20 mg. for  a couple days.  I will follow exactly doc's recommendation - I trust him and if I am very honest with him he will help me.  You know my body treats medication differently - generally I am a 100 lb. body inside my 230 lbs.  and have to take medication like a child. 

Ok, today for example - got up - no cramps - regular bm after my coffee (like in the old days).  Another bm later - hard, firmed, good color, no blood, no pain - just regular "gotta go" stuff.  I have two white toast with pb. and a couple crackers before leaving for my son's birthday party. I did not eat lunch but also did not take Imodium (which I did in past when going out).  We had a BIG piece of birthday cake - yum - with lowfat vanilla ice cream - that was lunch!  I had a little gas before leaving but really nothing extra.  We stopped at grocery store.  I got me three homemade stuffed shells filled with cheese - nothing like jumping in to see what happens!!  I just ate them, feeling great and planning on staying that way. (I have GERD and small hiatel hernia so I have to separate that from UC).  I am second day on 20 mg.  I am to call tomorrow and see what next move is.  I know doc planned on me staying on 20 mg. for two weeks.  I have three refills I can get.  I would like to try a "mild" suppository for the occasional discomfort in that area - no pain!  So happy right now not to have blood fpr 13 days (and I have been using my flashlight). 

I know prednisone scared me and still is but relying on my doctor to regulate and help me where he can.  I don't really think at age 68 I have to feel perfect - just more normal.  I am lucky to not have to work, etc.  I do plan on knee replacement April or May.  Both my surgeon and GI doc work close together both in the medical building consulation.  One real perk and I am afraid will come back - NO JOINT PAIN - prednisone got rid of my inflammed joints - what a great feeling)

Tapering on prednisone (I know I haven't taken it long) has been easy - today a little jittery but upped my Xanax a little.  I always have munchies anyway so no problem there.  One thing I notice - I feel much less bloated and comfortable in my clothes.  So many people gain weight which I really don't need - so far I have lost 3 lbs. - who know?? 

I wlll keep you all up to date. 

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.
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.  Plan on adding 6MP (or?) at lowest possible prednisone dose.
Probiotic Align, Prilosec for GERD

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