Christine - question?

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kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 2/9/2009 3:39 PM (GMT -6)   
Somewhere I know I ask you since you are about my age and seem to have same situation with medications, etc.
I just wanted to know when you started on 40 mg. prednisone - tapering - how soon did your doctor put you on 6 MP .  My doc mentioned it but never said when.  I am third day on 40 mg. and so far it is helping - crossing my fingers.  Hope you are feeling good.
ElaineNY
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.
 
 
 
 
 
 


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 2/9/2009 5:46 PM (GMT -6)   
Kops2da...... just a quick question... since you're on day 3... how's the knees feeling? joint pain better? I ask cause my knees ( also bad ) and my arthritic joints all feel better when on 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
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
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Date Joined Jun 2008
Total Posts : 2865
   Posted 2/9/2009 5:58 PM (GMT -6)   

Yes, unclebubba - knees and other joints already feeling better - assuming it is the antiinflammatory part.  I can't take nsaids which always helped so this ia a nice relief.  In fact, I usually take about 8 Tylenol a day and today only 4 so far.  One perk I guess.  Still don't have any cartiledge in my knees but pain is better.

ElaineNY


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.
 
 
 
 
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/9/2009 10:18 PM (GMT -6)   

"bump" and hope Christine or someone can answer my question about 6MP and whether you started it before ending or lowering prednisone.

ElaineNY


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.
 
 
 
 
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/11/2009 12:12 PM (GMT -6)   

"bump" - sorry - just wondering how long I should wait to talk to doctor about maintenance as I taper prednisone!

ElaineNY


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.
 
 
 
 
 
 


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 2/11/2009 12:36 PM (GMT -6)   

Maybe there is a way for you to change the title of your post so more people will read it.  (( I could claim I read your post because my name is Christine, but really I am just more nosey than a lot of people on the board)) 

Perhaps a Moderator will be able to do it for you. 


UC diagnosed 10/05, first symptoms 1983
6mp * asacol 12/daily * rowasa pm * cortifoam am 
 Culturelle Probiotic - prilosec - metamucil capsules
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/11/2009 12:46 PM (GMT -6)   
I did write another post and got replies but Christine is about my age and similar symptoms so I wanted to see her answer.  Thanks.  My other post is
on page two and only one answer - Red.  Just wanted more opinions, especially Christine.  I see she had replied to another so that is why I "bumped" it up - hope that is not against the rules!
ElaineNY
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.
 
 
 
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/11/2009 5:52 PM (GMT -6)   
     Hi Elaine....soo sorry this is late.  We were away for a few days and I didn't see this post before we left.
     I have been on 6MP for five years.  The doctor started me on it because he was afraid I was getting too dependent on the prednisone.  The 6MP does not keep me in remission Elaine.  Last year I suffered the worse flare of my life.  The doctor started me on 30 mgm of prednisone with a 10 mgm per week taper.  This just was not helping me.  When I was admitted to the hospital my pancreatic enzyme levels (amylase and Lipase tests) were off the wall..very elevated.  My GI doctor panicked and stopped the 6MP.  At the end of my hospitalization my enzyme levels had returned to normal.  When I went for my first follow up visit to the GI he put me back on the 6MP...I had been off it for about 6 weeks.   I was on prednisone for seven months.  Only when my doctor "jump started" my dose of prednisone at 40 mgm with a 10 mgm per week taper was I able to achieve remission.  Before that I would relapse after being off the prednisone for two weeks.  Hope this isn't too confusing ...LOL.
     I cut my 6MP down to 50 mgm one day and 25 the next because my WBC went down to 2.4 while on 75 mgm.  I don't like that at all.  I have been off the prednisone and Cort enemas since Nov 1st.  Still in remission..feeling great.
     This disease is so weird.  When flaring you feel so sick...bleeding, diarrhea, tenesmus, etc...but when in remission you feel great!
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/11/2009 7:03 PM (GMT -6)   

Thanks for your reply and I know we are all different.  Just have to wait to see what my doc says after I get down to 20 mg. and see how I am.  I have NO idea what "pancreatic enzyme levels (amylase and Lipase tests) were off the wall..very elevated. " means in terms of health.  I guess if you have a good GI doc and followup anyone would be ok.  I know my husband has been on many medications and they monitor him closely at VA with blood tests, etc. and he has had to change some from time to time.  I feel good right now - would like to stay there and am willing to try whatever my doc feels will do the job!!  I know my NP is great and Rachael will explain any medications and combinations to me and give me literature to follow. I would love to continue to feel as I do today - no blood, almost firm stool, 3 bms normal and little gas and cramping.  BUT - I have IBS so my symptoms are often from that also - like too much sugar gives me gas!

ElaineNY


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.
 
 
 
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/12/2009 2:00 PM (GMT -6)   
     My pancreatic enzyme levels being high meant that my pancreas was out of whack and he thought it was due to the 6MP.  I worked in a hospital lab years ago and know that sometimes it is possible for the test to be "off".  Doesn't happen very frequently, but it does happen.  Seems ironic that one week later my tests were 100 points lower.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/12/2009 2:14 PM (GMT -6)   
What happens if your pancreas is "out of whack"!  I assume you get sick or ?  ElaineNY

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.
 
 
 
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/13/2009 10:43 AM (GMT -6)   
     Well, when I was admitted to the hospital I was really in bad shape Elaine.  Bad pain, bleeding, diarrhea, very high blood pressure.  When they performed the CT scan while I was still in the ER, it showed inflamation thoughout the colon.  But when I had the colonoscopy about five or six days later, the inflamation was located in the rectum.
     The pancreas produces insulin.  I imagine pacreatitis is very serious and was told it sometimes could be fatal.  My GI doctor thought the 6MP was affecting my pancreas, as in some cases it does. Therefore, he took me off the 6MP pronto.  Although his associate who saw me often in the hospital wondered why I was off the 6MP.  Wish these guys would put their heads together sometimes..lol.  I am glad there are several GI doctors in this practice because they all have their theories.  The senior partner (now retired) actually thought I had Crohn's!  Oy vey!  He was the only one though.  So I went with the rest of their opinions.  However the GI who treated me in the hospital is TOTALLY against my taking Remicade and my GI was for it.  I am totally against it too.  I was exposed to the TB virus back in the 60's while working in the hospital lab and Remicade could activate the virus.  My GI explained that there are shots I could take to keep the TB virus from activation but NO thanks.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/13/2009 11:32 AM (GMT -6)   

I sure dread the thought of being that sick and having to be in the hospital.  Only been in once overnight to have my gall bladder out - pretty good for age 68.  Now I have done something to my sciatic nerve (feels like) and hurts a lot today.  Not the same as UC back pain so assuming sciatic or kidney pain.  Do you know if prednisone can bring on this pain?  I am on my last day of 40 mg. - hope 30 mg. works as good!

ElaineNY


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.
 
 
 
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/13/2009 7:46 PM (GMT -6)   
     Wow Elaine, you are lucky being able to stay out of the hospital.  Do you have children?  If so, did you have them at home?  My aunt did..all three of them delivered by a midwife.  Believe it or not, my aunt was NEVER hospitalized until she had Alzheimers and was too bad to care for at home at age 82!  She lived to be 89.  Outlived all her siblings.  She always said hospitals will kill ya.  Something to be said about that because my good childhood friend died in a hospital of sepsis.  She suffered from Addison's Disease brought on by quitting her prednisone cold turkey for treatment of Crohn's.  Don't know how she developed sepsis but I am sure it was while in the hospital.
     I wouldn't mess around with pain in the back, make sure it isn't a kidney infection.  Prednisone shouldn't cause this.  At least not in my case it didn't.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/13/2009 7:56 PM (GMT -6)   

Christine - no, I had my boys - two - in the Army hospital in Germany - never really considered that "being" in the hospital.  Two nights and home!

As for the back pain - two low for kidneys and feeling better tonight.  I just know it is because my knees feel better from arthritis (I have no cartiledge) and I overdid or twisted because it did not hurt and caused some nerve pain.  I will see doc if not better by next week.  Could be from UC which I have had before - however, no blood, no D, no cramping - no UC symptoms for a couple days. (other than some gas)  I have had sciatica before as I am obese and legs are crooked from arthritis.

 Tomorrow starts tapering prednisone.

My Mom was never in hospital until age 75 from accident.  Then she ended up there more often with CHF and died at age 92 in hospital.

 

ElaineNY
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.
 
 
 
 
 
 

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