Back on prednisone again

[Lori1973]

Our son just started his third round of Prednisone. He is 12 yrs old and recently diagnosed with crohns in october 2012. Is this pretty common for dr.s to restart prednisone while waiting on 6MP to establish itself? We were just freshly off the prednisone and he experienced stomach pain (mild) with just so tired...slept all last weekend. Terrible joint pain in his ankles and knees. Then they started him on some antibiotics to help with the absyst that is sluggish on healing. That really tore up his stomach and then he experienced loose stools with significant blood loss in the stool. Dr. then started him on prednisone last wednesday and guess what--we are back to feeling great and lots of energy, just moodiness..ugh... just curious if this is pretty typical with your kids that are struggling.

Stressed out about this and to top it off had to deal with a basketball coach that don't understand and thinks my son is making it all up. :ymad:

 

[crohnsinct]

Hi and welcome. Sorry about your sons dx and suffering. Yes, I think it is pretty normal to go back and forth on Prednisone until the maintenance med kicks in and is able to handle the Crohns. My daughter was put on Remicade at dx and yo yo'd on Prednisone for about 4 months.

I hope the maintenance drugs kick in fast for you and that someone educates your son's coach. We have a smiley for people like him and just about all other things frustrating about thi sdisease. Meet our friend stabby :voodoo::voodoo::voodoo:

 

[Jmrogers4]

:voodoo::voodoo: I'll add my mr. stabby for the bball coach! Hopefully this time will be it for the prednisone. It does take a while for the immunosuppresents like 6MP and Imuran to reach theraputic levels, we had to adjust dosage many time after dx to reach the right level.
Welcome to the forum and I hope he is on the road to feeling better soon without the pred.

 

[izzi'smom]

We were off and on pred forEVER (OK, so it just seems that way). By the time we finished weaning, it seemed like we were starting up again immediately. Hoping 6mp does the trick for you!! Does your son have a 504 plan? I find that because it explains potential symptoms and related issues, it helps people to understand the way Crohns works. I give a copy to all of Izzi's caregivers (I know she is significantly younger but it sounds like your coach needs an education).

 

[FullM3lt]

Dr. then started him on prednisone last wednesday and guess what--we are back to feeling great and lots of energy, just moodiness..ugh... just curious if this is pretty typical with your kids that are struggling.

Stressed out about this and to top it off had to deal with a basketball coach that don't understand and thinks my son is making it all up. :ymad:

I was on my third round of prednisone at age 12 too. It's a double edged sword....helps with symptoms but creates new side effects that are bad (moodiness, horrid joint pain). I experienced exactly what your son is going through, it's very normal with prednisone. My knee/ankle pain never went away though.

I hope your son can get off the prednisone soon and find remission. It can help but it can also hinder...

 

[Sascot]

Sorry, I have no experience with Pred, but from reading around here, it does seem difficult to get off it. I hope things settle down.

 

[Patricia56]

He was only diagnosed 8 weeks ago and has weaned off pred twice in that time?

That seems unusual to me - in a good way. Shows that your son's doc would really rather not have him on pred and is trying to get him off it as quickly as possible but is using it when he feels it's necessary.

What has been typical in the past is to put a child on high doses of 40+ mg and leave them there for 4 to 6 weeks or longer before starting to wean. At that point it takes at least another 4 to 6 weeks to wean them off the pred.

I'm sure the doc explained that it can take as long as 4 months for the effects of 6MP to kick in so you have a couple months to go before you will know for sure if it is going to be enough to get him into remission.

That's a bummer about the antibiotics. Has your doctor recommended probiotics? If not I suggest you ask about adding them to your son's diet. This can be a very helpful addition for some people.

The first couple of years can be a real roller coaster as the right combo of meds, diet, lifestyle changes are found to help get your son into remission and then keep him in remission.

I'm sorry you had to find us but you are more than welcome - we're glad you're here and we are happy to answer questions, listen to vents share your sorrow over this change and find ways to make light of things you never thought you'd joke about = ever.

 

[Crohn's Mom]

Hi Lori1973 and welcome ~ we're sorry you had to come looking for us, but we're happy to have you here !

My daughter also did the prednisone roller coaster ; if I remember correctly it was well over a year before she could come off completely because she became steroid dependent.

As others have said, it can take 3-6 months for the 6MP to take effect, and even then you may find that his dose may still need a little tweaking.
I have heard from our GI's that with 6MP it either works, or it doesn't ~ there's no in between with it ~ but you do have to give it time to work its magic

I hope your sons coach comes around and becomes more understanding :hug:

 

[my little penguin]

:hug:
DS also did the pred roller coaster this summer when it became apparent 6-mp was not quite enough for him.
It does take time to work make sure they are checking lots of blood levels ( ast/ alt/6-mp levels / sed rate/ crp etc) often at least every two weeks for a while or with any change in dose .
The first year was very rough for us but remember there is a light at the end if the tunnel( if you can't see it yet then you need to run to the end and turn it on yourself).:ylol2:

As far as teacher ccfa has lots of brochures just for teachers and coaches we had to pass those out.

 

[AZMOM]

Im with MLP. It took a year for us to find a "new normal". And I HATE steroids. When they need 'em, they need 'em! But whew, it is a roller coaster!!

Im a big advocate of 504s so that all the teachers/coaches are on the same page.

J.

 

[jmckinley]

Hi Lori! We've done the on/off/on with the prednisone also. I agree with others that it seems they aren't leaving him on long enough. When we started 6mp, Ryan took prednisone for over 2 months starting out at a high dose and tapering slowly. This year, his GI did the low dose/short term thing which resulted in 3 rounds of prednisone this year. It didn't really work until we went back to the high dose method.

As for that coach, he does need educating. I would google as much info about the effects of IBD and hand it to him. He needs to understand that it's not just an upset stomach. IBD affects the ability to concentrate, energy level, skin conditions, everything. When your gut doesn't absorb nutrients, nothing goes unaffected!! Tell him to starve for a week and let you know how well he can think/make quick decisions/drive/...... Seriously, people have no clue!

 

[Farmwife]

No real advice just support.
Hugs to you both!

 

[DustyKat]

Hey Lori,

I agree about the length of the Prednisone courses. He should be on a regime that lasts 8-12 weeks so by the time he is fully weaned the 6MP should be kicking in to take over.

How is your boy doing?

Dusty. xxx

 

[Twosons]

I'm sorry your son is dealing with so much. My son is newly diagnosed as of June 2012. He has yet to go off prednisone. He's on his 5th hospitalization where once again he's had Iv steroids too. I truly cannot wait for him to be off it.