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Crohn's Disease Forum » Parents of Kids with IBD » Prednisone second round isn't working


01-30-2016, 04:48 PM   #1
mayas_mom
 
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Prednisone second round isn't working

My daughter was put on prednisone at the beginning of December upon diagnosis. It worked within 24 hours, no more blood and much less frequent BMs. It was awesome but didn't put her in full remission, so she started Imuran and tapered off prednisone. That was a disaster!! Halfway through the taper bloodtests were done and when her dr saw the results he called her in to change the treatment.

Upon assessment he noticed her ulcers were very very inflamed so she was put back on the full dose of prednisone hoping to bring the inflammation down and she was to begin Remicade infusions asap. Of course the insurance process took some time but now we have an appointment for this Tuesday.

My question is this; she's been back on the full dose of prednisone for a week and its not having any effect this time. She's going to the washroom constantly, blood in the stool, lots of abdominal pain, along with all the other nasty side effects just make her feel worse

Has this happened to anyone else? Having prednisone stop working when it worked very well before.

Thanks in advance
01-30-2016, 04:54 PM   #2
Maya142
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Prednisone becomes less effective the more you use it. She may need a higher dose or she may need IV steroids. If she is very inflamed, she might not even be absorbing it (which is why they would do IV steroids).

Have you told your doctor that she's not doing well?

She could also try EEN if she is willing.

I hope Remicade works like magic for her! Some kids respond immediately while others take a while (3-4 infusions). Hang in there.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-30-2016, 04:59 PM   #3
my little penguin
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Ds had that pred and not a lot of relief
Remicade can take 6-8 weeks to be fully effective
Ds was still vomiting after his third infusion but a week later he was perfect again

Second EEN Ds did well with that but flared as soon as food was reintroduced
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01-30-2016, 09:23 PM   #4
Keepsmiling
 
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We had a very similar experience - prednisone worked wonders the first few times but for the most recent flare it was ineffective. Even IV steroids were not working and we were told our daughter's disease was considered "steroid refractory". We had very little time to think about starting Remicade (which in hindsight was probably best for us). Within 24 hours of her first infusion we saw an amazing improvement. I hope everything goes well for your daughter's infusion and she feels better soon.
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2012 -Daughter dx with UC at 6 years old
Treated with steroids and then Pentasa

End of 2013 - Pentasa failing badly
June, 2014 - hospitalized and moved on to Remicade with 6 mp

December, 2014 - Remicade dosage upped, frequency increased

July, 2015 - frequency decreased, same dosage

As of September, 2015, considered in full clinical remission 😇
01-31-2016, 07:33 PM   #5
mayas_mom
 
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Thank you all for your advise and kind words
I really do hope the remicade works, I've heard such good things about it....fingers crossed!!
01-31-2016, 08:35 PM   #6
kimmidwife
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We have also had that happen when the disease was really bad so the but couldn't absorb it Well. Make sure you let her doctor know what is going on. Good luck with the remicade this week.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
02-03-2016, 06:43 PM   #7
CarolinAlaska
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I'm so sorry. I hope the infusion went well and she gets back to being a very healthy child.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
02-03-2016, 09:25 PM   #8
Optimistic
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Hoping to hear good news about the infusion...
02-04-2016, 09:32 AM   #9
mayas_mom
 
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She had her first infusion and so far she still feels terrible but there's no longer blood in her stool. Hopefully it's beginning to heal and soon feel better

I'm afraid of her going off the prednisone again, that the remicade won't be enough to keep the flare down.

Thank you again for the support, it's much appreciated.
02-04-2016, 11:01 AM   #10
my little penguin
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They didn't start weaning Ds from pred until after his 2nd infusion

Glad things are improving
Onward and upward
02-04-2016, 11:01 AM   #11
crohnsinct
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Great news that the bleeding has stopped. It took my daughter a good 6 months to get to remission with Remicade. Even then every time we tapered the steroid she became symptomatic. WE had to do a course of EEN to get her to remission and then handed Remicade a healed bowel and it took over beautifully. We also could have just added an immunomodulator but I was hesitant at the time.

My advice - make sure the prednisone taper is VERY slow.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

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
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
02-05-2016, 07:56 PM   #12
Optimistic
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Let's take the no blood as a wonderful sign you are moving in right direction. If each infusion brings some progress, we take that, right?

I get the fear of moving off prednisone. I was pretty much convinced my son would be on it forever both bc he needed it physically and I needed it for an emotional safety net. I believe if you do a very very slow wean and backup at any sign of a problem, you will be in a good place with this remicade overlay. i feel positive about her for some reason.
02-06-2016, 04:14 AM   #13
Sascot
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Fingers crossed things improve every day.
02-13-2016, 07:55 AM   #14
CarolinAlaska
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She had her first infusion and so far she still feels terrible but there's no longer blood in her stool. Hopefully it's beginning to heal and soon feel better

I'm afraid of her going off the prednisone again, that the remicade won't be enough to keep the flare down.

Thank you again for the support, it's much appreciated.
I'm sorry that she is still feeling poorly. I hope it turns around for her soon.
02-13-2016, 10:11 AM   #15
BlackButterflies
 
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Prednisone used to work for me right away (within a week things would start to settle). This last time it hasn't worked at all - I have been on a higher dose for a much longer time (over two months) with no effect and am tapering slowly for sanity's sake and to hopefully lessen the withdrawal side effects. I see my GI in a few weeks to discuss Remicade as my next step.
I hope your daughter continues to get well, everyone seems to have good things to say about Remicade which makes me pretty hopeful, even if it is a little bit scary. Seeing blood everyday is mentally dismaying so hopefully she continues to heal
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