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Steroids versus biologics

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Ulcerative Colitis
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mclark6214
New Member
Joined : Nov 2016
Posts : 1
Posted 11/6/2016 5:35 AM (GMT -8)
I have had UC for over 30 years, and have been off and on prednisone with no visible side effects. Usually would take 30 or 40 mg daily and taper down to none once flare under control, which was probably 15 times approx thru the years. I had been on 5mg daily for over a year from last flare up, new doctor very much against the steroid. I have been in relapse of some sort for most of the year, she did allow prednisone twice this year, now wants to try biologic approach. From what I am reading, Humira and Remicade are nowhere near fail-safe, as my prednosine was. I am 53, prednisone always worked for me, now it seems everyone wants to go biologic. Anyone else out there been on prednisone and having relapse without it and finding no one wants to prescribe it?? Being on the Lialda and azathioprine is not enough for me to stay out of relapse, apparently.

(I added a subject)

Post Edited By Moderator (iPoop) : 11/6/2016 8:06:33 AM (GMT-7)

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Richard in NY
Regular Member
Joined : Nov 2012
Posts : 208
Posted 11/6/2016 5:55 AM (GMT -8)

mclark6214 said...
I have had UC for over 30 years, and have been off and on prednisone with no visible side effects. Usually would take 30 or 40 mg daily and taper down to none once flare under control, which was probably 15 times approx thru the years. I had been on 5mg daily for over a year from last flare up, new doctor very much against the steroid. I have been in relapse of some sort for most of the year, she did allow prednisone twice this year, now wants to try biologic approach. From what I am reading, Humira and Remicade are nowhere near fail-safe, as my prednosine was. I am 53, prednisone always worked for me, now it seems everyone wants to go biologic. Anyone else out there been on prednisone and having relapse without it and finding no one wants to prescribe it?? Being on the Lialda and azathioprine is not enough for me to stay out of relapse, apparently.

Your doctor is right to want to find an alternative to long term steroid use, even if you have "no visible" side effects.

www.mayoclinic.org/steroids/art-20045692?pg=2

When taking oral corticosteroids longer term, you may experience:

Clouding of the lens in one or both eyes (cataracts)
High blood sugar, which can trigger or worsen diabetes
Increased risk of infections
Thinning bones (osteoporosis) and fractures
Suppressed adrenal gland hormone production
Thin skin, bruising and slower wound healing

********

Prednisone works for you, as it does for most people. The biologics work for most people too, without the dangerous long term side effects that corticosteroids have. If you try them and they don't work for you, you can always go back to the prednisone.

A signature that summarizes your condition and medications is helpful for people who reply to you and is setup under the "My Profile" option.
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 11/6/2016 6:21 AM (GMT -8)
It sounds like you had a course of steroids once every 2 years on average. Not ideal, but probably not all that dangerous provided you weren't on any steroids between courses. I was able to take a course of pred once a year (on average) for a few years without any apparent side-effects.

You can see the problem already, can't you? You are no longer able to keep going for a while without any steroids, but are on 5mg for maintenance. That will creep up to 10mg, then 15mg and so on, until you are hopelessly steroid dependent. That's when the side-effects kick in. That's when steroid withdrawal symptoms becomes hell. (Yes, I'm speaking from personal experience.)

In a nutshell, your new doctor has the right approach. Go on a biologic and try to kick the pred.
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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8717
Posted 11/6/2016 6:51 AM (GMT -8)
what are your flare symptoms ?

do you use butt meds ?

what is your diet like ?

do you take any supplements ?

are you on meds for other afflictions ?

welcome !
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16415
Posted 11/6/2016 7:10 AM (GMT -8)
Welcome. Steroids are one of the most effective ulcerative colitis medications but unfortunately one of the short term only, rescue medications as they do irreversible damage to your body over longterm use, and also cumulative short term use over many decades. Your uc isn't well controlled if you need steroids that often.

I'd go biologics. It's true about 65 percent of uc patients respond to biologics, so nothing's a guarantee. Can't hurt to try, the odds are at least in your favor. Biologics are the only uc medication to put my uc in remission.
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amybanks
New Member
Joined : Nov 2016
Posts : 17
Posted 11/7/2016 6:18 AM (GMT -8)
I'd get an adrenal gland test. I'm not a doctor so I'm paraphrasing what I remember, but your adrenals produce the equivalent of 5mg of prednisone per day. So it's not suprising that you're stuck st 5. It sounds like you're been on them long enough that your adrenals have stopped making heir own. The test will tell you if this is the case. If so, the good news is that you don't actually need it, you just need your adrenals to work again. There are two methods I'm familiar with. A super slow taper, 5mg for a week, 4mg for a week, etc. or to go 5mg one day, 0mg the next, back and forth. Obviously your doctor would guide you through all of this!
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6362
Posted 11/7/2016 7:31 AM (GMT -8)
The bad long lasting side-effects are unseeable. I am suffering from the effects of long-term steroids, I have osteonecrosis of my right hip and need to have a total hip replacement; basically the steroids killed my hip.

I also had my skin thinned out from the prednisone, when I went for my laparoscopic colectomy my skin failed due to the steroid use. They then had to switch from Laparoscopic to an open surgery and have a 12" scar on my stomach from it.

Biologicals are well studied and very safe for most people.
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colitisqueen
Regular Member
Joined : Jul 2015
Posts : 47
Posted 11/7/2016 7:42 AM (GMT -8)
hmm
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Andreita
Veteran Member
Joined : Aug 2011
Posts : 3838
Posted 11/7/2016 10:08 AM (GMT -8)
I wonder what your bone density is.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17869
Posted 11/7/2016 10:41 AM (GMT -8)
I'd definitely take the biologic. I chose surgery over taking steroids again. Steroids just seemed like a short term solution that caused more problems than anything else. For me, I had awful side effects from steroids, I couldn't stand to go out in public. I wasn't myself in any way. I know for some, they do much better, some don't even notice or mind the side effects, but when it's destroying your body from the inside out, at a certain point, you need to make a decision. Do you want to live life with a flare up every year, a course of steroids lasting from 3-6 months+, and potentially risk damage to your long-term health, or do you want to try to get stabilized with something else, and hopefully gain long-term remission and avoid future steroids/flares? I am not willing to give up my bones to UC.
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pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 11/7/2016 11:03 AM (GMT -8)
I have had better results with Humira than Prednisone ever did. Humira put my crohn's colitis and RV fistula into remission, prednisone, IMO is the type of "band aid" treatment that doesn't "stick" compared to biologics based on my experiences.

Apparently in Canada where I live, less and less GI's are even considering Prednisone anymore because they say that biologic's have a much better affect overall.
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jujub
Elite Member
Joined : Mar 2003
Posts : 10424
Posted 11/7/2016 4:09 PM (GMT -8)
Sometimes steroid side effects aren't at all visible until they are. Then you have a completely collapsed head on your femur or humerus, likely with intense pain. Or your vision is fading due to cataracts. Or your adrenal glands have decided to completely quit and you have Addison's disease. The chance of serious side effects from long-term steroids approaches 100%. while the chance of serious side effects from biologics is much lower.

I'd try to stay away from steroids if at all possible. I learned the hard way.
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6362
Posted 11/7/2016 8:47 PM (GMT -8)

jujub said...
Sometimes steroid side effects aren't at all visible until they are. Then you have a completely collapsed head on your femur or humerus, likely with intense pain.

Osteonecrosis freaking hurts, I've been dealing with off and on for the last 2 years and now it's getting really bad. I'm getting it fixed next month but I'm not looking forward to it, I won't be able to drive for upto 8 weeks because it is my right leg that I'm having surgery on.
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