06-12-2013, 05:59 PM   #1
Senior Member

I mentioned in another thread that I'm glad that A has a little more time on the Prednisone. For her it has been so helpful and with vacations approaching I'm okay with not weaning just yet. Because she's going to be on Prednisone for 3+ months I want to educate myself about potential risks and side effects and what to expect when it comes time to wean. What I'm not sure of is what constitutes "long term use"? What should I expect if she starts experiencing symptoms again once she starts tapering?

I'll probably have more questions once I start getting answers, lol.
A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies, Intestinal Lymphangiectasia

Treatment: Hizentra, Advair, Zyrtec, Cellcept
06-12-2013, 06:23 PM   #2
my little penguin
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Join Date: Apr 2012

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Three months is considered long term.
DS was on it for three months last summer.
Watch for Cushing syndrome.
Dexa scan and bone age scan was recommended for DS due to the long term use.
Increase calcium - we used peptamen jr since it had calcium lock.
Weaning brought moodiness
Swelling in arms legs hands feet trunk face
Joint pain
Be cautious with any surgical or dental procedure for a long time after weaning.
Let any doc know how much pred she was on and for how long.
DS - -Crohn's -Stelara -mtx
06-12-2013, 07:04 PM   #3
Senior Member
I've definitely been pushing calcium (dairy products, broccoli, okra, calcium fortified OJ, etc) and limiting her salt intake. That is easy enough to do. I'll have to research Cushing Syndrome.....
06-12-2013, 07:14 PM   #4
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Johnnysmom's Avatar
Join Date: Oct 2011
Location: Cincinnati, Ohio

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My son needed a PPI to protect his stomach from the very beginning of starting Prednisone.
During weaning he had a few bad days where I held my breath and thought he would need to stop the weaning. But, it was just his body adjusting and he ended up getting off prednisone on schedule. He would have a BM with blood, occasional headaches, joint pain, was very tired, and emotional. It took till about 2 weeks from being off completely for him to feel good. I would check in with the nurse often just to report what was happening and she was always encouraging and let me know what he was going through was normal.

xxxKeeping my fingers crossed everything goes well!! xxx
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
06-12-2013, 07:42 PM   #5
Senior Member
So during the wean I should expect her to feel pretty crappy and have some of her symptoms return? To be quite honest, that really sucks. What a way to start a new school year.....
06-12-2013, 11:22 PM   #6
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Mehita's Avatar
Join Date: Nov 2011
Location: Minnesota

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DS has never had a problem weaning, but it's around the 5-10mg week that my radar goes back up. Hopefully you won't have symptoms as you taper if 6MP is working of her. Stay positive!

The only thing we've really noticed is that his appetite drops pretty significantly when finally off the pred. Keep in mind that pred increases appetite in some people so a decrease when no longer on it is somewhat normal.

We're done tapering in 5 days...
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
06-13-2013, 10:23 AM   #7
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Join Date: Mar 2012
Location: California

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O never had any problems on prednisone. Slight puffiness but we watched her salt intake and it was minimal. Some night sweats and some joint pain but that could have been disease to as it was right after dx. As she tapered lose bm's and blood returned which only signaled the Remicade wasn't working all the way so we went back up on Prednisone and tweaked Remi. After 6 months she was totally off Prednisone with no issues what so ever.

She was also put on a PPI at dx with the Prednisone but our GI said that was more for stomach inflammation rather than PPI use and that he didn't buy the Prednisone/PPI connection. Then after prednisone was stopped and she only had a month of PPI left and I asked if I should refill one month (anticipating stopping PPI) or three (mail order) I was told 3 because if she ever went back on Prednisone she would need it. Wish I had a tape recording to show him his own discrepancies! She is still on PPI. Hoping to stop in July...but I digress....GOOD LUCK!
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
06-14-2013, 05:42 AM   #8
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Join Date: May 2010
Location: Kentucky

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My son has had two "long term" pred courses. The first (3 months) brought extreme appetite, mood swings, and puffiness. Weaning did not seem to cause any additional problems. The second, I don't think, was quite that long. While he still had some of the usual symptoms, they were less severe that go-round. Both times, he was put on Nexium that was discontinued after taper. For our GI, it's just standard practice. He's never needed PPI following taper.

Now, he preloads his weekly Humira with 20mg pred and has no reaction at all to that weekly dose.
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
06-15-2013, 08:15 AM   #9
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CrohnsKidMom's Avatar
Join Date: Mar 2013
Location: (Canada), Nova Scotia

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My son started Pred on Apr 1. We started to wean off in May, hoping to have him completely off by Jul 1, but had to stop the weaning process as he could not tolerate Imuran. He is currently at 1/2 the original Pred dose. He gained 10 lbs in April and looks quite puffy, but that seems to have levelled off now. Only other side affects from Pred have been good-a return of energy, playful, etc. He has started MTX and we are continuing the wean of Pred now. If MTX works, he'll be off Pred by end of Aug. Longer than we had hoped, but what can you do?!

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