Longest time you have been on Pred?

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barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 464
   Posted 8/18/2007 4:58 AM (GMT -7)   
Hello all
 
I seem to have been on pred more often than not since I was diagnosed 7 years ago.  Ive been on it for over 4 years this time and cannot get off it. Its awful and very depressing. My GI is now forcing me to have surgery.
 
I was wondering whats the longest time others have been on it?  Did you ever manage to come off it? If so, how?
 
Thanks
Back on Pred - 10mg - Steroid Dependent :-(
Azathioprine 125mg
Actonel 35mg
Predfoam
VSL #3 with Activa Yoghurt
EPA Fish Oils
Asacol x 9
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
Prograf Tacrolimus 4mg
 


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 8/18/2007 5:15 AM (GMT -7)   
Your GI is "forcing" you to have surgery? I wouldn't let anyone force me to do something I didn't want to. Are you ready for surgery? Have you tried remicade yet? I would consider getting a second opinion.

The longest I was on pred was 8 1/2 months. I had to go on Imuran to get off it.
Tabitha

100mg Azathioprine, 2 Fibercon, Colazal-9 a day (attempting to cut this down to 6 by slowly tapering), acidopholis pearls, just added Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 464
   Posted 8/18/2007 6:55 AM (GMT -7)   
Yes, Tried Remicade and it did nothing for me. Hoping to go onto an Abatacept trial this month. Its my last chance for remission i think...
Back on Pred - 10mg - Steroid Dependent :-(
Azathioprine 125mg
Actonel 35mg
Predfoam
VSL #3 with Activa Yoghurt
EPA Fish Oils
Asacol x 9
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
Prograf Tacrolimus 4mg
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 8/18/2007 7:14 AM (GMT -7)   
I was on pred for 3 years with 80mg as my highest dose. This round has been a year with 40 as my high and I'm starting imuran next week because my GI believes I am also steroid dependent.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, back to 30 mg pred.
Waiting for prometheus test to start Immuran
Prontonix once daily for acid reflux, zofran twice daily for nausea


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/18/2007 7:35 AM (GMT -7)   
Wow, and I thought I was on it a long time. 4 years sounds way too long, you could be doing some serious damage. I've been off and on it for 7/8 years now, but always with some time off, and already I have osteopenia and I'm 22. I would definitely agree that a second opinion is a good idea, no one should force you to do anything you don't want to. Ultimately, it's YOUR decision. You're the one who has to live with it.

The longest I was on was 5 months at 45mg with no taper in sight, so I tapered myself which added another month or two, and then I found a new doctor.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
Primadophilus Reuteri
20 mg Citalopram (for depression/social anxiety)
125mg Imuran
10meq Potassium Cl
 


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 8/18/2007 9:23 AM (GMT -7)   
What about Humira? You might be able to get approved for it since you've already tried Remicade. Maybe you do need your colon removed but I wouldn't let anyone force me to do anything. You are still in control.
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
2nd Remicade infusion


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/18/2007 12:49 PM (GMT -7)   

I was on varying doses for 2.5 years before opting for surgery.  Four years is a long time and it is probably time for you to evaluate another course of treatment that includes getting off prednsione for good. 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


TNCrystal
New Member


Date Joined Feb 2006
Total Posts : 15
   Posted 8/18/2007 7:14 PM (GMT -7)   
I was on it for 4 1/2 years. Remicade was the only thing that allowed me to completely taper off however I had a flare within one month of being off of steriods. At that point I decided that surgery was my best bet and I am happy with my decision. Steriods are so damaging and awful!
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