How long does 'prednisone high' last?

[firemama]

Evelyn (just turned 8 yrs old) was just diagnosed with Crohn's (lesions in large intestine and esophagus) over thanksgiving. She was started on 20 mg/day of prednisolone and 15 mg/day solutab of Prevacid. and continues to take 2 tsp lactulose 2x/day.

aside from the few days at Childrens Hosp in DC for a kidney stone (ugh) the first few weeks were pretty good. She was almost like the happy go-lucky kid I had not seen in years. full of energy, eating, and gained a few pounds! We are trying to stick to the low-residue diet and keep a high liquid intake (goal is 50 oz/day, and are close most days)

the last couple weeks are slowly seeming to return to the norm of tiredness, fevers, not feeling good, not eating much, and occasional vomiting. We have a follow-up appt with the GI today and I presume we will be talking about what maintenance meds to try first.

questions:
1) could this be the flare getting worse?
2) what maintenance meds did your kids try first?
3) should we ask about upping prednisone?
4) how long does one usually stay on prednisone to combat the flare?

the local chapter of CCFA has some support groups that I will get involved in. And I think Evelyn would benefit from finding some kids that she can identify with. Does anyone here live in the DC area?


thanks for listening! - Christy

 

[my little penguin]

Keeping tract of fatigue number of bm's , amount she is eating , type of BMs is going to be your norm for a while.
The pred may not be high enough or like my son it just takes a long time to heal everything.
You should have started maintence meds at the beginning of pred here is why :
You typically don't wean the pred until the maintence med has built up enough to take over .
Types of maintence meds -5-ASA ( pentasa asacol etc..) are basically like giving aspirin for a brain tumor -not going to help much but not going to hurt either -these you know are enough as monotherapy after 30 days . There are a ton of reports/studies that show 5-ASA are not a very effective monotherapy. Ds started on this without pred while we got a second opinion since his Gi tract looked good but biopsy slides showed crohns.

Second set of meds ( immunosuppresants-6-mp Aza mtx)
Ds started 6-mp with 9 weeks of EEN ( formula only no food effective as pred in kids) he still drinks peptamen jr with food to help with growth /weight now.

6-mp/Aza takes 3-6 months to become effective .
You need blood work once a week then every two weeks then once month.
Again you can't weean until you been on it for 3 months minimum so Cushing syndrome is a risk as well as mood swings , lack of sleeping , weight gain moon face etc from the long term pred....minimum time to wean is lowering 5 mg of pred per week sometimes longer without flaring .
Ds didn't not do well on this at all
It never took away the fatigue or stomach issues ( vomitting). It also couldn't reach therapuetic levels without raising his liver numbers ( ast/alt).
We even tried lowering the dose and adding allopurinol . After 8 months we gave up and switched to Mtx .

Methotrexate takes 8 weeks to become effective typically given by shot once a week
Blood work same as 6-mp
Ds was on Mtx plus pred to let the Mtx build up. Every time we lowered the pred he would get worse and vasculitis rashes showed up on his legs . So after 12 weeks we gave up on Mtx.
Biologics ( remicade,Humira, cimizia , stelara , ETc..) Ds next started remicade
While still on the pred from the Mtx. After three infusions -6 weeks we were finally able to wean him.
Remicade was great for 8 months first time we got our kid back in a year from
Dx . But he started out with skin rashes on his face hands scalp blisters , skin peeling etc...
By month 7 had a reaction at the infusion . Month 8 another reaction so we stopped and switched to Humira.
Humira take 3-6 months to become effective .
That worked as well just took time to get back to norm 5 months since the dodd wasn't high enough at first .
He now is on humira plus Mtx since he was so dx with juvenile spondyloarthritis associated with Ibd in hands that runs independant of his Gi flares.

So far so good .

 

[crohnsinct]

Sounds like maybethe prednisone dose isn't high enough to me but remember I am just a mom

I am also surprised that they didn't start a maintenance med right away. Hopefully, at your appointment this will be decided.

What you try first will really depend on your doctor's approach and your preference. Top down vs. bottom up. There seems to be more of a trend towards top down with the pediatric population these days. Disease is aggressive in children and missed opportunity for growth is a concern. Brain development also needs a nicely healed body that is absorbing all the needed nutrients.

For the reasons above a lot of pediatric docs will choose to hit the disease hard with the drugs that have the greatest success rate...biologics. The added benefit to getting the disease under control quickly is that is reduces the chances of surgery down the road.

As for risk profile, there are no drugs that stand out as having the best or worst profile. None of them are great but neither is uncontrolled disease.

FWIW my daughter started on Prednisone and Remicade. We eventually dropped the prednisone and did a course of Exclusive Enteral Nutrition. Formula only diet for 6-8 weeks. EEN has been shown in studies to be just as effective at controlling disease as prednisone and has the added benefit of inducing mucosal healing. Also great for nutrition and encouraging weight gain.

Good luck at your appointment. Keep us posted

 

[firemama]

thanks for the quick responses! this gives me more confidence when I start asking the dr these hard questions at our appt today.

 

[firemama]

so the GI had asked us to bring in a stool sample for the appt on Wed, and it tested positive for blood (but not visible). So as I suspected, the prednisone had worked initially, but we were seeing the effects of the inflammation again. Also, she has lost weight again (end of November was 41 lbs, Dec 18 up to 47 lbs, and now on Dec 31 down to 45 lbs). ugh...

So he increased the prednisolone to 30 mg/day (he had planned to start decreasing it). He said he wants to wait on other med till the nephrologist follow-up this coming week. This is to follow-up from the kidney stone on Dec 8 (thankfully she passed it after getting 4 bags of fluids). The meds he mentioned were Remicade, Pentasa and 6-MP.

So after a few days on the higher pred, she is feeling better and eating a bit more again. Getting these little glimpses of the zest for life that she used to have make me realize how much I have missed her. And because the decline was so slow, I am not sure I realized how bad it was.

Monday I am off to visit the CCFA office near me to see what information I can learn and get contacts for the support groups.

I am inclined to push really hard for the Remicade as it seems to be most likely to have a quicker effect and can hopefully get off the pred sooner. She hasn't had any of the nasty short term side effects (moodiness), but I am concerned about the long term effects and what if this dose of pred starts not to work ... go still higher?

looking onward!

 

[Mehita]

I often look back at old photos and think, "how did I not see how sickly he was?" Pale, thin, just... not well. We see our kids everyday, so it's hard for us to notice the slight and slow changes. I rely on the grandparents a lot now. They see him every two to three months and my MIL doesn't know this, but I watch her face when she first sees him each time. Listen for comments from friends and family too.

Good luck with the med choice. Ask lots of questions both of the great folks here and your GI. My son did all three of those in a bottom up approach and the only thing that's worked for him is Remicade.

Hope she continues to feel better!