This is what I will be doing next....

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kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/6/2009 11:13 AM (GMT -6)   
As you can read from my signature I have been a year trying everything and finding out a lot about what works and what doesn't, etc.  I cannot take any mesalamines.
Two weeks ago I had the blood tests after taking 75 mg. 6MP for a week and all was ok.  BUT - side effects made me drop down to 50 mg.  I have been on 6MP for almost 3 months - seeing no change along with 25mg. prednisone (went down to 20 twice but bleeding got worse).
So, NP called with doctors instructions....
75mg. 6MP starting today for a week and then promethius tests again (they did the wrong one last time - ugh), taper prednisone 5 mg. every 5 days, hydrocortisone enemas every night for one week (tried them before and they made me worse).
I told NP I am willing - just hope the body is!  All blood tests normal for white blood count, no c-diff from stool sample.
Also, he is referring me to a specialist GI doctor in Albany, NY.  That is good - never hurts to get a second opinion. I am a senior with mild to moderate mostly proctitis and just is not respoinding. 
Wish me luck!
ElaineNY
 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/6/2009 11:25 AM (GMT -6)   
Good luck, Elaine! :-)

Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/6/2009 11:28 AM (GMT -6)   
Good luck! I hope something works for you soon!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


AlliUC
Regular Member


Date Joined Mar 2009
Total Posts : 52
   Posted 5/6/2009 1:18 PM (GMT -6)   
Lots of luck to you Elaine!
Hope things work out soon and you are feeling better.
I think it is great when doctors seek each others expert opinions.
Female, 41

2009/03/03 - ulcerative colitis - Pancolitis
1995/09/15 - proctitis (during pregnancy, just months after I quit smoking)

Prednisone Mar 5/09 60 mg - taper by 5 mg every 4 days starting April 17/09
Salofalk enemas = 5-aminosalicylic acid (mesalamine) added March 24/09
Mezavant 4.8 g daily (mesalazine) added April 29/09


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 5/6/2009 6:24 PM (GMT -6)   
Good luck!   When are you seeing the specialist?  Let us know what he says.

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/6/2009 6:28 PM (GMT -6)   

The NP said they would be working on the referral.  I have to be sure Medicare and my insurance pays.  I am going to try one more week of 6 MP at 75mg., have blood tests and then decide from there.  I looked up this specialist and seems like one of the best in New York State.  He is heading a conference overseas next month so probably have to wait for referral.  His education is extensive and studying ulcerative colitis, crohns and other IBD. 

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 5/6/2009 7:37 PM (GMT -6)   
Maybe Remi is your next step....it might really help with your arthritis??

two dilemas with one med...

quincy
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~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 5/6/2009 7:43 PM (GMT -6)   

Main thing doctor wants right now is to get me OFF prednisone.  As for Remi - not sure - what I read at my age might not be too good.  I would have to have a complete heart exam.  I have so much congestive heart failure in my family, etc.  We will see. 

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 5/6/2009 7:46 PM (GMT -6)   
Yep...pred isn't all its cracked up to be.....that's why some call it evil I guess devil

Hope you can get off it...maybe the steroid foam enemas will help.

quincy


*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~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 5/6/2009 8:27 PM (GMT -6)   

Yes, I am willing to try it once again.  This time hydrocortisone enema.  I have some left when I tried them before.  They AND Canasa suppositories, Proctofoam, hydrocortisone suppositories - all tried - all caused more bleeding.  I just told the doc I was willing to "try" again.  I can only get about 1/2 to 2/3 enemas in - no problem staying in but getting it there is the problem.  I would rather not have to travel to Albany so willing to try ONE MORE TIME.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 5/6/2009 9:05 PM (GMT -6)   
Maybe the foam would be better and a lower dosage?

q
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~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 5/6/2009 9:09 PM (GMT -6)   

If you mean Proctofoam - seems like the reason I stopped that was no change or worse.  It is difficult for me to administer.  My obesity is so bad and even worse with prednisone - yuck!  I am about to try the enema for the night!  I am just getting too old for this stuff!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 5/6/2009 9:12 PM (GMT -6)   
LOL...yeah, it all sucks.

Hope you get improvement soon.

q
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~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 5/7/2009 8:36 AM (GMT -6)   

Morning - used the enema - a whole lot did not get in but what did I had to get rid of in about an hour.  Never had that happen before - always could keep even some in all night.

This morning - bottom so sore - now I rememeber why I don't like this steroid enema.  I will try one more night and then I do have some Proctofoam and some steroid suppositories - which would be best to try next?  YIKES!  I KNOW that rectal meds are very important for me with mostly proctitis!! 

Woke up sicker because of increasing 6MP I think to 75mg.  Not bad enough to worry about - YET!!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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