Longest time you have been on Pred?

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

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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

 

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...

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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

 

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.

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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

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

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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