My son's story...scared of prednisone

Hello there....I'm so glad to be part of this forum!! My current issue is I'm freaking out about my son being on prednisone. He was diagnosed 5 years ago (10years old at the time) with rheumatoid arthritis and took NSAID's off and on for 5 years. This past Feb. he was diagnosed with Crhon's, his symptoms being severe fatigue, failure to grow, mouth sores, etc and a CRP of 12.9. He took Entocort for 6 months, but it did not do enough. He is now on Prednisone and Pentasa. HIs steroid dose was 40mg for the 1st week and then to be decreased by 5mg each week. Does this seem too much for a 15 year old? He is small and thin, and I'm so afraid that his growth will be compromised for the next year and to some extent permanently. His previous doctor was very much against steroids so I'm even more freaked out! He has now tapered off to 25mg. Is it safe to taper more quickly than 5mg per week (of course I would speak with his MD first...he has an appt. on friday)? I don't think it will end up putting him in remission because he is still having discomfort when he eats. Do you have any thoughts on this?? Thanks in advance!

I was diagnosed at 13 (back in 79-80?) and was put on 60 mg for 2 months then taper at 5 mg per week. Prednisone (while I hate it with a passion) would send me into remission every time. The dosage he is starting on and the fact that he is beginning to taper immediately, means he won't be on it that long. It really does help trmendously!

Good luck!

Hi Mijer's Mom. Welcome to Healingwell.

I am the mom of an almost 15 yo who was diagnosed with CD when he was 10. Because I am a mom like you and have spent several years participating in an online support forum for parents of kids with IBD I have a different perspective than the other posters.

The dose of prednisone is typical and may be the right one depending on your son's weight. Tapering at 5 mg a week is fine until he reaches 20 mg. After that he is likely to need a much slower taper. And if he is having breakthrough symptoms at 25 mg I doubt he will be able to wean much lower.

There may indeed be long term effects for him from having been on 2 steroids (Entocort is also a steroid but has a smaller effect on the body as a whole) for what will be nearly a year by the time he has weaned from the current dose of pred. Primarily poor bone quality can be expected and delayed growth.

However, being sick with Crohn's will make those things happen too.

It sounds like your son's doctor is following a treatment plan that appears to be relying on steroids to the exclusion of most other medications often used to effectively treat pediatric Crohn's. While Pentasa may be helpful, it doesn't sound like it has helped him get into remission. If these are the only medications the GI is recommending after 10 months of treatment failure I cannot urge you strongly enough to get a 2nd opinion ASAP.

You are right to be concerned about his growth. Most boys have their growth spurt between age 13 and 15 and should be growing roughly 4" a year during this time. Most pediatric IBD docs avoid prednisone if at all possible for many reasons but one of the major ones is it's impact on growth and bone health. Has your son had a DXA scan to determine his bone density? Or a bone age (wrist X-ray) to see if his bone age is delayed?

Is your son being treated by a Pediatric GI or Pediatric IBD specialist? Ideally he should be seen by a Pediatric IBD specialist. Even if you have to travel a long way to see one, it is my experience that it makes a huge difference in the quality of care and is more than worth the difficulty. We travel 100 miles each way to see my son's doctor after having received care that was actually dangerous from local GI's.

The "traditional" medical approach that is the standard of care for pediatric patients with Crohn's varies according to the severity of their illness of course. But, given that your son has not responded to prednisone, has growth failure and other significant symptoms, I would guess that he has moderate - severe Crohn's.

For newly diagnosed patients with mod-severe Crohn's there is growing evidence that a top-down approach to treatment may be the most effective treatment plan both short and long term.

A top down approach would mean that he is put on a biologic - Remicade, Humira or Cimzia - very quickly - perhaps as soon as the week following diagnosis. The idea is to hit the disease hard while it is still primarily inflammatory (as opposed to fistulizing or stricturing) and put the child into a solid remission quickly. Continuing maintenance treatment with the biologic is the current standard of care so that the child is able to develop and mature normally despite the Crohn's and to hopefully avoid complications like fistulas and obstructions.

The biologic may be combined with an immune modulator to reduce the chance that the child will become sensitized to the biologic and have to switch meds due to loss of effect or side effects.

Depending on the severity of the illness, an alternative approach would be to start him on an immune modulator - either methotrexate or mercaptopurine(6-MP) instead of a biologic. I am frankly astonished that he was not immediately started on methotrexate which is often effective for both RA and Crohns. Methotrexate takes several weeks before you know if it's working. Mercaptopurine (6-MP) takes up to 4 months. Has he been given Methotrexate in the past for his RA and it wasn't helpful?

With this approach, the child is typically put on entocort or prednisone and an immune modulator started. Weaning from the steroids is usually timed so the immune modulator has had time to start working. Many docs also give 5ASA meds like Pentasa at the same time.



In the short term, one treatment that is often as effective as prednisone without the dangerous side effects is enteral nutrition.

Enteral nutrition means that he would stop eating regular food and rely exclusively on liquid formula - either OTC like Boost or Ensure or a prescription formula - for several weeks to help heal the inflammation. This is actually the first line treatment prescribed in Canada, much of Europe and many other parts of the world. Up to 60% of the children who go on enteral nutrition will be in remission within 12-16 weeks. If it works for him, he may see great improvement in his symptoms in as little as 2 weeks. He will almost certainly gain weight and may even grow thanks to the formula even if his Crohn's doesn't go into remission.

Many ped gi's here in the US are finally trying this approach. Here, enteral nutrition is often started along with an immune modulator. The formula gets the child into remission and the medication sustains the remission once the child goes back to eating normally. If the child is very sick Entocort or prednisone may be used at the start for a brief period.

I hope this information is helpful to you. The online forum I referred to earlier is dragonpack.com/ibdsupport/parents/. It is not a healingwell site. Come visit dragonpack any time. The site is run by MiSFit. She runs the site single-handedly and one of her son's has been in treatment for Hodgkins Lymphoma. So it may be a while before she gets you plugged in to the board after you ask to join. In the meantime you can read the posts. And of course you can post here on HW.

All the best,

Patricia

Clarification about prednisone wean -

In our experience, if he's having symptoms as he weans, going slower helps reduce the chances of it getting worse or having to go back up a dose.

Also, we have had 2 pediatric endocrinologists tell us that weaning past 20 mg should be done more slowly (at least in children/adolescents) to help prevent adrenal complications. I don't know if this advice applies to adults and it may indeed be uncommon.

Among kids whose parents participate on Dragonpack, it is a regularly reported problem although not frequent. At least 2 kids on the board have had life-threatening complications from adrenal failure associated with corticosteroid use and prolonged (1 year+) adrenal failure/dysfunction requiring frequent treatment. Since DP kids tend to be sicker or have more complications than many kids with CD it's hard to tell how frequently this problem occurs in the larger population.

The fact that he's having symptoms at 25 mg is really the main thing that made me suggest he may need to slow down and the endo's stressed the 20 mg level as a metabolically significant dose.

Regarding bone health -

Our experience is that this is a growing concern with the ped gi's due to the fact that you are dealing with developing bones. My son is enrolled in 2 growth studies. Based on my conversations with the main investigator, growth failure with poor bone health appears to be much more common in boys with Crohn's. One of the things they are tracking in the growth studies is the extent of corticosteroid use.

Bone density already appears to be poorer in kids with Crohn's regardless of steroid use. Supplementation may not be real effective for many kids because they are growing and have a higher need for calcium than adults.

The main thing that helps with growth failure and bone health is (duh) getting the Crohn's into remission.

Patricia

Remicade is a good medication also, but I don't think its a med for life. You are able to use it as long as it continues to work for you. I personally prefer a bottom to top approach, but many docs are doing the top down approach now. We have members here who have been successfully maintained on 6mp or the sister med Imuran for over 10 years for some. They have a pretty good record too.

I want to tell you one important thing though, with Crohns you should not be using NSAIDS on your son. They can cause serious consequences such as bleeding in us Crohnies. We are only allowed Tylenol. Now Remicade would be helpful also with the joint issues, so in your case, it might be the med to go with. JMHO

Hugs!