Where you on Pred as a kid?

[Mehita]

For all of you who were dx'd as children and were put on prednisone, have there been any long term effects that you now as an adult directly correlate to being on prednisone as a child?

I know doctors generally do not like to put children on pred for long periods of time or at high doses. My question is how long is too long? How many rounds of pred is too many?

DS has been on pred three times in the last two years and he's only 13.

Oct 2011- 8 wk taper, started at 40mg (maint was Pentasa)
June 2012 - 6 wk taper, started at 40mg (maint was Pentasa)
May 2013 - 5 wk taper, started at 40mg (switched to Azathioprine)

Did pred affect your growth? Puberty? Bone density? Other things?

Thanks

 

[PsychoJane]

I've been on pred for almost a year when I was 14. They gave me dose as high as 1g solumedrol bolus due to a weird-reaction/induced-disease linked to cyclosporin. These were not beautiful days...

As far as side effect goes... I had many while I was taking the pred but luckily enough not much that lasted. In my case the worst are the stretch marks that are quite intense. They all appeared in the year of pred and the following... Unfortunately, irreversible. I had drug-induced diabetes during the time I was taking the cortisone, it went back to normal afterward. Now, am I more prone to pregnancy diabetes or type two diabetes from it... so far, I don't know and hope I'll be fine on these aspects! As far as bone density go, I know I had slightly lower bone density at the time, I don't know the situation as of today but I'm being screened for potentially related side effects. My GI said something about a necrotizing something (to be honest I'm still at the: " I don't want to even look into it" phase lol.) So he sent me to run a bunch of tests but I much more suspect it to be sacroiliitis. Now, I don't think this has any link with pred, more with inflammation and sadness of unfortunate comorbidities.

 

[Jennifer]

Back in the day the doctors didn't seem to know that being on steroids long term was a bad idea. At most I was told it may stunt my growth or cause Osteoporosis. Each time I was on it it was at a high dose to start (50mg sometimes 60mg) and they kept me on that high dose for many months to almost a year making the taper take a year or more.

I was 9 (1991) when I went on it the first time, then again at 13 (1995), and then at 16 (1998) (with this last one I was on it for over a year including the taper). I think I was given a short course (10 days of a high dose of 50mg with no taper) of steroids a couple of times in between those longer courses but I don't remember when.

My GI back then told me that I would likely keep growing in my 20s which isn't unheard of. I'm 31 now and haven't had my height measured since my resection back in 1999. Back then I was 5'4". Now measuring myself at home I'm 5'4 1/2". Not much of a difference but it may be more than that, just waiting till I see my doctor next so I can get my height measured.

My mom is 5'5" and my dad is 6'. All of my siblings are taller than me including one of my sisters who also has Crohn's and did take steroids a couple of times as a young teenager (same doctor so similar dose and length of time being on it).

Only extremely noticeable thing I got from high doses of steroids over a long period of time was stretchmarks because of all the fluid my body was retaining. Same thing happened to my sister.