Crohn's Disease Forum » Parents of Kids with IBD » Prednisone tapering ... symptoms back


 
02-15-2013, 10:39 AM   #1
parentnj
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Prednisone tapering ... symptoms back

Alec was almost done with his prednisone tapering (2.5mg) ... tomorrow was the last day and he woke up with bloody D this morning. He is so upset. going back to 5mg and then 20mg if necessary. Our GI is scheduling and appointment with another GI that is more experienced with biologics. He is suggesting either 6MP or Remicade ... I am leaning towards Remicade as it seems to be more effective and from what I have read, the sooner you start on Remicade after DX the more likely the effectiveness and the less likely you will develop antibodies. Does this sound reasonable? We want to stop the disease as fast as we can and are afraid it may take 6 months to figure out 6MP doesn't work. We also want our 13 year old off steroids ASAP.
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Son Alec 13yrs old - DX 11/2012
Remicade
Methotrexate 12.5 MG Oral & Zofran weekly
Folic Acid Daily
2000 IU Vitamin D Daily
1000 IU B-12 Daily
One A Day for Athletes

Failed - Pentasa
02-15-2013, 10:45 AM   #2
Clash
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We went from Pred to Remicade. The Pred was px'ed by the diagnosing GI while waiting for our Ped GI appt. C didn't seem to get any benefit from the pred. Your explanation is similar to the one the Ped GI gave us. Since C was experiencing severe activity from CD the route he wanted to take was to give Remicade to try to get things under control and get C off the pred, which seemed to be having no benefit. I hope he is feeling better quickly.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
02-15-2013, 10:53 AM   #3
parentnj
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Prednisone seemed to work as intended ... all his bloodwork was normal 6 weeks ago ... now we are back where we started. Pentasa is not helping. So deflating.
02-15-2013, 10:59 AM   #4
Johnnysmom
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Usually the 6mp is started the same time at the prednisone because by the time you are done tapering the 6mp is working. I am not sure why your GI did not have a plan for a maintenance medication. Prednisone only works as long as you are on it.

I don't think it is that uncommon to need to bump back up a bit while tapering Prednisone. Especially now that Alec is at the very end of tapering. So I wouldn't be too discouraged about that. I understand with and agree that you want to get things under control fast and that it is your best chance at remission. My only concern is that the 6mp may have been enough if your GI would have started it right away. I would talk to the new GI about Remicade, continuing the Pred a while longer and starting 6mp now or switching to EN instead of Prednisone and trying the 6mp. Any of those options might work well and hopefully the new GI will be more experienced and be able to give you the proper course of treatment.

It does take a while to get the right treatment figured out. I always imagined that when people went into remission it was quick and easy. But is a longer road than any of us would like. I am sure you will get there.

((((((Hugs)))))
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Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
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02-15-2013, 11:04 AM   #5
parentnj
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Our GI thought Pentasa would be enough of a maintenance med. He says he has several patients that maintain on Pentasa alone. I guess we won't be one of them. He is definitely in the slow "step up" camp.
02-15-2013, 11:43 AM   #6
polly13
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Same thing happened Lucy with the prednisone taper She was on it with the 6 mp which also didn't work but the GI gave 6 mp a good six months before discussing other options . She is on remicade now
02-15-2013, 11:49 AM   #7
parentnj
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Polly13 - that is what I am afraid of with the 6MP.
02-15-2013, 01:37 PM   #8
parentnj
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3rd bad episode of bloody D since this morning ... ugh ... no other symptoms except he has little appetite (no surprise). he was fine yesterday ... ugh.
02-15-2013, 02:20 PM   #9
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It sucks doesn't it. My 13 yr. old did pred for 12 weeks(last day was 1/1/13) while building up the 6mp. Our GI said it takes 3 months for it to build up to the necessary levels. He's actually doing fairly well, but we found out this week the 6mp isn't working as well as it should. Symptom-wise he's pretty good, but the toxicity risk to his liver is too high due to the 6mp. Waiting for a call as we "speak" from the GI to discuss the next step. He wants to switch to Methotrexate, I'm not so sure (like I know?). Wish the answers regarding treatment were more defined with this disease. Seems like everything is a crapshoot.
02-15-2013, 03:16 PM   #10
parentnj
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its so frustrating ALotToLearn, he is back on the bowl again. We have an appointment with the second GI on Monday. hopefully getting closer to an answer
02-15-2013, 04:46 PM   #11
CarolinAlaska
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PNJ, how fast are they tapering? What has his course been on the pred? Is he tapering super slow?
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent 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.
02-15-2013, 05:00 PM   #12
parentnj
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He was tapering down 5MG every 5 days but then went from 5mg to 2.5mg for the final taper. He was at 2.5mg for the last 4 days and other than a few headaches it was pretty uneventful until today. Doctor called back and told us to get him back to 20mg since he is have so much bloody D. Monday we will figure out the next treatment with the second doctor. hope it works better than Pentasa.
02-15-2013, 05:02 PM   #13
CarolinAlaska
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I know my doc was planning a slow taper once we got below 10 mg, like decreasing by 1 mg. Perhaps the taper was just too fast?
02-15-2013, 05:11 PM   #14
NMMom
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In our case Ellie was started on prednisone and Pentasa right at the time of official dx. About 3 weeks later we added azathioprine. It's now been 4 months and she *seems* to be responding. We haven't reached remission yet as each time she gets a virus it seems to throw her back into a flare (even a cold has done this). However, it does seem like the aza is getting her there albeit slowly.

I liked the idea of going to 6mp first before Remicadee as for some reason it seemed to me that by doing so we were leaving some options availble for later. Ellie is so young, 5 soon to be 6 in March, that I was concerned with going straight to the biggest gun - remi- and then having nothing after except surgery.

My logic might be flawed but as we all know when we're in the eye of the storm it's hard to know which direction is best to take. I hope whatever you all decide he started to feel better soon.

*sorry for all the typos! big fingers, lol
02-15-2013, 05:14 PM   #15
NMMom
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oops, forgot to mention we had the exact problem with the prednisone taper. Just when we were ready to stop it she would start having pain and blood again. Because Ellie's disease is in her large intestine, pancolitis, her doctor will give her Entocort as needed as to my understanding it's a steroid but doesn't have the systemic side effects of Prednisone.
02-15-2013, 05:19 PM   #16
Jmrogers4
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Alottolearn - Methotrexate as far as symptoms goes worked wonders for us and it is supposed to be a pretty good option for teenage boys. Unfortunately he had a reaction and developed bronchitis/lung issues from it so we could not keep him on it.
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Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-15-2013, 05:25 PM   #17
Johnnysmom
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Our GI said that Pentasa was like taking aspirin for a brain tumor. It is approved for treating Ulcerative colitis but is usually only used in conjunction with other meds for crohns. I am surprised your doctor suggested it, ours wouldn't let us.

6mp might still work well. It is a much different (stronger) drug than Pentasa. And if your sons symptoms didn't show up till he was tapered at 2.5 mg he might not need that much or that long of a Prednisone dose to get him through till the 6mp starts working.

The thing about Remicade is that once you start it, you can't get off it and start again because your body will produce antibodies. I wouldn't be afraid to go to Remicade if you need to but If the 6mp will work, you might want to give it a try.
02-15-2013, 05:25 PM   #18
parentnj
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thanks everyone, I can't tell you how much your collective wisdom helps ... we get to do the taper again since he was bumped back to 20mg today ... we will take it slower I am sure. On Monday we will talk about all the options with the doctor. My head is spinning today.
02-15-2013, 07:17 PM   #19
CarolinAlaska
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<<<<<HUGS>>>> I know the feeling. I hope you can sleep tonight.
02-15-2013, 07:32 PM   #20
my little penguin
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Just throwing our exp
DS did pentasa for a month while we confirmed crohn's dx.
It did nothing.
DS tried 6-mp for 8 months with EEN first then later allopurinol
Was added since he was also having liver toxicity.
He was never symtpom free either.
We ran into the problem your having when he switch to MTx
Gi put DS on pred to give Mtx time to work .
Every time we lowered he got worse.
Our Gi was also trying to "save" remicade since DS did have that bad of labs or scope.

For him remicade was a miracle - no symtpoms
We can say we tried all of it for DS but ...
It took a year while trying with DS suffering the whole time.
However it may be a mute point if your insurance requires trial of an immunosuppressant prior to approval of a biologic.
Our does .
Good luck
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02-16-2013, 08:15 AM   #21
parentnj
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I checked with our insurance and they will allow Remicade if steroids or 6MP fails ... you don't have to do both. So we have a choice to make.
02-16-2013, 08:57 AM   #22
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Don't think there is really a right or wrong answer with meds. We have just started the 6mp as our GI tends to save the Remicade for later on. Hope whichever one you choose, it works well!
02-16-2013, 09:28 AM   #23
AZMOM
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Parentnj - it can just be so hard to get off prednisone. We had a similar experience while trying to get 6MP To a therapeutic level when Claire was diagnosed. Sounds like you're on it though......sorry he's struggling!!

Julie
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Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
02-16-2013, 09:40 AM   #24
polly13
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Polly13 - that is what I am afraid of with the 6MP.
I know exactly where you are coming from , but 6 mp works well for some children - the decisions around the meds sometimes are so difficult to make.
02-16-2013, 02:52 PM   #25
parentnj
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the good news is jumping back to 20mg took care of the symptoms ... he felt good enough to go to his pitching lesson today. only one BM so far today, almost back to normal and no blood thank god. Its only temporary but at least he responds to and tolerates the steroids very well. Cant wait to find the treatment that allows us to say goodbye to prednisone. thank you everyone.
02-16-2013, 07:05 PM   #26
CarolinAlaska
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Glad he's responding to prednisone. I hope you can find a med for maintaining remission quickly that will allow him to get off the pred.
02-18-2013, 07:26 PM   #27
parentnj
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Just had the best consultation with our new Ped GI at Goryeb Children's Hospital... very approachable and very collaborative. We settled on Methotrexate as the next step and add Remicade if that doesn't get us to taper off the Prednisone after 30 days or so (holding at 20MG now). Goodbye Pentasa ... Doc said it only works on ~10% of Crohn's patients with Alec's profile (terminal ileum) and in Alec's case it is not helping. Good news is Alec continues to tolerate and respond to the Prednisone at 20MG ... he feels great right now. I'm going to say a prayer tonight we are on the right path. Scheduling required blood work now.
02-18-2013, 07:33 PM   #28
my little penguin
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Sounds like a good plan - hope the Mtx works quickly .
02-18-2013, 07:42 PM   #29
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I hope the MTX works for your son! My son takes 10 2.5 mg of MTX a week and he has had no side effects at all. His GI did px folic acid along with MTX.
02-18-2013, 07:54 PM   #30
Crohn's Mom
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I'm glad you seem to have some answers and a plan that you feel good about.
Having a doctor that is approachable is so important

Hopefully the Mtx works quickly as well and he can come off of the Prednisone.

Best of luck!
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