Karen

I can't really offer much medical opinion, but I can give you our story and my support.  My son is 6 1/2 years old, but he has been on pred since Feb when he flared from a bout of the flu.  We started MTX then and continued the sulfasalazine he was on.  The pred works wonders, of course, but the goal is to use it to get something close to remission and then taper off.  Sometimes it's used to bridge medicines so you get some relief while a new med is starting to take full effect.  We have been able to lower the pred dose significantly, but when we tapered off too fast, his symptoms came back again.  Our dr put him back on the pred and asked us to taper him off very slowly.  Hopefully we'll be able to get him off of it completely.  I too am concerned about keeping him on it for too long, but I also feel like every time we taper too fast and his arthritis gets bad again, we are going backwards and taking even longer to get where we want to go.  His dr. reassured me that he is on a small dose and that it is safe for a few more months.  I can only believe him.  Thankfully the only side effects we have on this dose are some increased urination and a little bit of increased activity.  At the higher doses he was totally hyper, agitated and irritable. 

I think that if you trust your dr, then you have to trust his opinion on this.   The drs have so much experience with pred and kids, and there are definitely times when the benefit outweighs the risk.  Things like dose and timing make a difference in what is acceptable in each case, and each case is individual.  Sometimes the drs can't tell what will work until they try it, and sometimes they guess wrong.  So frustrating for everyone involved.  I hope that you'll be able to find a combo of drugs that work for you and get off the pred soon.

Mo

Ultimately, we ended up treating with another rheumy, due to distance, and the fact that our current rheumy prescribed the same course of treatment (although not as aggressive as CHOP)....

Anyhow, while we all know that steroids aren't the best longterm, I think it takes tons of prednisone to have a super negative effect.  With the help of prednisone, Brianna's initial flare calmed down.  Like in your situation, she had a couple flares when we tried weaning her off the prednisone which helped us realize that MTX was not enough.  It was the hardest 3-6 months ever.  Such a roller coaster...So, in February 09 we added Enbrel to MTX.  We were able to stop the Naprosyn, and she hasn't been on steroids in months.  The prednisone is a miracle drug, and as a parent you want to give your child whatever it takes to get them moving again and pain free.  Try not to fear it.  I always thought of it as a temporary fix until the next line of treatment would kick in.  The rheumy never made us feel like we were doing any major harm with the prednisone.

Hang in there...I know you hear this from others, but I, too, want to remind you that it WILL get better.  It will.

Okay - so our story might be a bit scary in answer to this topic, so let me say a few things off the top.  First - My daughter has systemic JIA and had a pretty severe case for 8 years.  She has tried and failed most of the medications out there.  Not that there is a "typical" case, and not to compare any of the struggles our children face - because all of the struggling is difficult - but in general, I think most kids find medical control much sooner and easier. I try not to fear based on cases of other kids with worse symptoms and histories.  Second - despite the side effects and results of the years of prednisone usage, I would not change a thing about how we gave it to her.

Over the years, as we went from one drug to another trying to get control over her arthritis, she was in a lot of pain.  Over and over, we kept coming back to prednisone to bring down the swelling.  She had active arthritis in all of her joints, as well as swelling around her heart. Not only did the pred alleviate her pain, but it kept her mobile and active- which are keys to maintaining joint health.  Our docs method of pred is the pulse method.  My daughter would take a high dose three times a day for five days, and then take nothing for 21 days.  I have seen one or two studies which concluded that short high dose bursts might avoid some of the side effects of longer, sustained low doses.  She did those low daily doses as well.  What we would see is that she would feel terrific after the pulse.... and when times were good, it would last about two and a half weeks and then we would limp along until the next pulse.  When times were bad, she would be in pain again a week after the pulse (Those are the times we would go back to a lower dose.)  Any time you are on the drug sustained, you have to wean off safely and over time.  Always, our goal was to get control and get away from the pred.... but we had to keep coming back to it when other things didn't work.

We had the usual side effects - increased appetite, puffy face, insomnia, bad moods.  We also had the unfortunate side effect of avascular necrosis in her hips - the bone is dying because of the long term pred.  She actually just had her left hip replaced last month.

But wait!  Honestly - I would do it all again - because we did the best we could to keep her active and out of pain.  And despite the side effects short and long term, I don't feel like we made a bad choice.

I hope this helps and good luck !

Best hopes to you-

Colleen (mom to Caitlin, 11)