Will I be on Pred forever?

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Regular Member

Date Joined Jul 2005
Total Posts : 393
   Posted 6/2/2008 2:23 PM (GMT -7)   
well its now been 3yrs of this disease and I just cant seem to get off steroids. Everytime Im weaned down, my flare returns. I hate this drug and I hate what it does to me emotionally. Will I be steroid dependent for life?

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 4wks, 20mg Pred, Asacol, 75mg Imuran, etc.

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 6/2/2008 2:59 PM (GMT -7)   
Generally once some other med kicks in you can get off steroids but in your case it looks like you have tried a bunch of stuff-you may need to be on it long term. Maybe you will be able to reduce the dose enough so that it stops playing with your emotions.
Good luck I hope you can find a good combination of meds that helps you reduce or even elimanate the pred,

Forum Moderator

Date Joined Nov 2003
Total Posts : 7119
   Posted 6/2/2008 4:34 PM (GMT -7)   
Once a person is deemed steroid dependent, that is usually when GIs start considering meds like Remicade or Humira. Has your GI discussed trying you on one of these meds in order to get you off the prednisone?
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 6/2/2008 6:58 PM (GMT -7)   
I feel for you... I really do. *I want off prednisone very badly myself...*
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Regular Member

Date Joined Aug 2005
Total Posts : 128
   Posted 6/2/2008 8:23 PM (GMT -7)   
do you know the location of your intestinal inflammation and how long of a stretch it goes for? Surgical resection is an option it seems. I was in your position, steroid dependent, on Remicade and Imuran and was still so sick. I had a resection and things got much better.

If you have short segment disease it may be a consideration.

Regular Member

Date Joined Jul 2005
Total Posts : 393
   Posted 6/3/2008 5:17 PM (GMT -7)   
thx Ides but Im already on Remicade....Kenny--not sure just got a smallbowel fllwthru and colonspy that showed it had spread to the terminal ileum and small intestine--before it was just in my sigmoid colon--I think thats the word.

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005--spread to ileum and small intestine as of April 2008. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 8wks, 40mg Pred, Pentasa.

Regular Member

Date Joined Nov 2007
Total Posts : 497
   Posted 6/3/2008 8:01 PM (GMT -7)   
Hugs Songstress!

I have not been dealing with this for very long, but I have been off and on prednisone, back on it now, in fact, and I have a tough time while on it.

Hopefully things work out for you and you are able to find something that works!

Veteran Member

Date Joined Mar 2006
Total Posts : 1354
   Posted 6/3/2008 8:13 PM (GMT -7)   
Hi Songstress,
I feel exactly the same way! Its been five years of this awful drug and even after my resection I still cant get off it. I taper down only to flare and hit it back up only to taper down again (im currently on 10mg and that seems to be as low as I can get). I can drop it by 1mg and stay on that for a few weeks and then flare again (the lowest I have been on is 5mg). I know my GI will push for Remicade, but last time she wanted this she said I would probably have to take the pred still plus Methotrexate - that would mean I would be taking three immunosuppressants - not sure I really want this. I see her on Friday so will be having the same arguments I always have with her - about why I cant get off the pred.
Dont forget to have regular bone density testing too, I am putting my order in for one with her this week as its been two years since my last test.
I know I havent been much comfort, but I do know how you are feeling.
Take care

Jason D in MN
Regular Member

Date Joined Jun 2008
Total Posts : 54
   Posted 6/3/2008 8:21 PM (GMT -7)   
I've been on and off Prednisone for 25 years with various bouts on other meds. Prednisone is really an "emergency only" medication for me as I've developed Osteopenia (sp?) from being on it and off it. It's not gotten better or worse since the diagnosis 6 years ago. I attribute this to my GI doctor prescribing Fosomax along with Prednisone, when I've had to go back on it. (He was my new doc at the time it was discovered...)

All I can say is I wish you luck, and be sure to discuss all the possibilities with your doctor as well as how to take care of or prevent side effects from prednisone! (I hate the stuff... but there are times where it's needed... my GAD gets seriously kicked into overdrive while on it...as well as aggression, irritibility, acne, weight gain...etc...bleh...)
-- Jason

Chronic Illnesses/Conditions.
Age? 37;

Diagnoses? Crohn's in 1983; Kidney Stones in 1997; Reactive Airway Syndrome in 2002; Major Depression and GAD in 2003; Migraines in 2006; ADHD and IBS in 2007.

Procedures? 1 Appendectomy. 3 Resections; 3 ESWL; Numerous ER visits (some due to clumsiness...) + numerous other minor procedures...

Past Meds? Prednisone, Asacol, Pentasa, Remicade, Flagyl and Cipro; Q-Var; Serevent; Cognitive Behavioral Therapy and current meds

Current Meds? 6MP; Adderall; Wellbutrin; Zoloft; Albuterol (emergencies only); Fexofenadine; and Epidrin or Imitrex (depends on migraine severity...etc)

Overall: Things are So-So. In other words "It could be worse. It could be raining."

Veteran Member

Date Joined Oct 2005
Total Posts : 1250
   Posted 6/4/2008 3:59 AM (GMT -7)   
I know I'm not going to be of any help, but I just wanted to let you know you're not alone. I've been on Pred for two years now. I can't get lower than 12mg. I'm also on Remicade and Imuran. Julie
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran just decreased to 50mg (because of Shingles)
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)

Regular Member

Date Joined Apr 2008
Total Posts : 90
   Posted 6/4/2008 4:12 AM (GMT -7)   
I have been on pred 4 15yrs low dose then high i am dependent now i think scared to come of them, but let me say iam 33 and 2 days away from having to get all my teeth out because of the steriods they eat away all my teeth iam also on imuran,mezalizine so if anything increase your calciam on these ones,,all the best.

Crohn's 4 ever
Regular Member

Date Joined May 2008
Total Posts : 207
   Posted 6/4/2008 6:45 AM (GMT -7)   
Wow, I am surprised you have been on Steroids that long! I hope you have had bone density test, and on calcium. I would be on another drug, anything other than pred, I was supposed to take them but finally the Humira started to work. So in case my GI is on holidays, I have the pred incase, but I hate taking them. I lost 12 lbs and want to keep it off. When I was on pred, I had the fridge strapped to my back, and never slept. I have had this disease 30 years , and thankful I am NOT on that dreadful drug! Good luck.

Regular Member

Date Joined Feb 2004
Total Posts : 28
   Posted 6/4/2008 11:45 PM (GMT -7)   
I was diagnosed with Crohn's Disease when I was 16. I am now 29 and have been OFF of prednisone for a total of 6 months in those 13 years. For me, it's a maintenance drug. I'm only on 5mg/ day and I'm told that your body naturally makes 4mg/day on it's own. (A healthy body. Mine stopped making prednisone when I started taking the prednisone pill.) However, not everyone uses this drug as a maintenance drug. I met a woman who had been on prednisone for some 40 years or something like that and she was 70! Eventually your body won't react as strongly to it. It really doesn't affect me at all anymore. I don't even notice side affects.I had my bone density tested last month and I'm still looking good. Unfortunately, I also have problems with my mouth, mostly my gums.

Hang in there, you can do it!

Regular Member

Date Joined Feb 2008
Total Posts : 88
   Posted 6/5/2008 5:54 AM (GMT -7)   
I was on pred for about 4 years, i would flare as soon as i got to 2mg. I finally got off it and have been for 6 years now so don't loose hope-im sure you'll get there eventually.
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