14 Year old==Struggling to taper off Prednisone

[crohnsteeny]

Hi everyone

My 14 year had a flare up Oct7th and was put on Prednisone. (Started with 40mg/day and now on 30mg/day). She also gets 500Mg Remicade every 4 weeks. When she tries 25mg/day, some of her symptoms keep coming back (Diarrhea/joint pain and pain goes from hardly anything to 4 or 5). As long as she is on 30mg/day, she is fine. She in on Prednisone for 6 weeks and not able to taper off

Has anyone had issues with their kids tapering off steroids ? We have a meeting with our GI expert in 2 days, even though he texted he might want to add another med with Remicade to allow taper of Steroid. Not sure what med he plans to give till we meet him (Maybe MTX ?/ Budesonide ?/). Was wondering if anyone of you had similar issues with your kids and had to add meds to help taper off Steroids

Thanks and would appreciate a reply

 

[my little penguin]

Buesonide is still a steriod.
It is not meant for long term .
How fast are you weaning ?
Meaning more than 5 mg a week ?
Typically is wean 5 mg a week till you get to 10 mg then 2 mg a week when the kiddo is sensitive to weaning
Expect symptoms-joint pain etc..for 1-2 days after each start of a lower dose then it levels out again

methotrexate typically is given to add to boost remicade .
How long has she been on remicade ??
Also adding een (exclusive enteral nutrition) to boos remicade while methotrexate is kicking in (takes 3 months )

some kids develop secondary adrenal insufficiency
So talk to endocrinologist about that
How to wean and how to test
Since it can cause diarrhea/joint pain etc. but typically that when oral steroids are stopped

 

[crohnsteeny]

Thanks my little penguin for the response

== We started with 40mg on Oct 7.
== November 2nd we tapered to 30mg (After around 3 weeks)
== Since November 16th, we tried tapering to 25 mg. Both days (16th and 17th( we tried to go from 30mg to 25 mg, she had symptoms, so went back to 30 mg
== She finished her loading doses of Remicade (First three) and then 3 more (Last 2 doses were 10Mg/Kg). Her first Remicade was August 1st (First loading dose)

Good thing is with her current medications, she is symptom free pretty much (Best she has felt in last 2 years). Surprising trying to taper from 30mg to 25mg can bring some symptoms back.

How did you kids handle Steroid (Prednisone) taper ? How long did it take ? Also, how long did it take for full resmission

Appreciate your time and response

 

[crohnsteeny]

After our meeting with GI expert, he wants to add Methrotexate as a combo med with Remicade to remove steroid dependency. He asked us to continue with 30mg till Monday, do some blood work next week before starting her on Mtx. He is deciding between Imuran or Mtx. Has any worked better than the other ? Also, it is bit surprising her symptoms (Primarily Stomach pain, Diarrhea, Joint pain), comes back trying to go from 30mg to 25 mg/day. With 30Mg/day and Remicade, she is pretty much symptom free. Not sure how 5mg Prednisone can make such a huge difference.

Thanks MLP

 

[my little penguin]

Imuran has a high risk of lymphoma so it’s not generally used in kids and teens anymore
That said mtx causes birth defects so SOME Gi prefer to use imuran with teen girls
My teenage boy (almost adult ) has been on mtx for years with humira first and now Stelara due to juvenile arthritis plus crohns

mtx does have side effects (nausea can feel like the flu, headaches etc…)
Wanted to add increased risk of t cell lymphoma (fatal kind) when imuran is combined with remicade or humira
Mostly seen in teen boys not sure on girls ….
The mtx has helped my kiddo a lot

 

[crohnsteeny]

Glad that mtx helped your kid. I think that's what we will end up with. Thanks for your time MLP