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Hi all, thank you for this wonderful site!  My 14 year old son was just diagnosed end of Sept. with Crohn's.  He lost 20 lbs in 2 month period.  He went into the hospital for 6 days with 24/7 tpn and came home with a picc line for nighttime tpn for a week.  He is on asacol/6mp/prednizone plus host of others.  He started on 60 mg prednizone.  He has gained back the weight plus 10 lbs.  Feeling pretty good right now.  The Dr. says it is great recovery.  He lowered his prednizone by 20 mgs 2 weeks ago, and now just lowered it 10 mg more.  My fear is that he is showing symptoms again, but they are different.  He has severe muscle cramps now, particularly in his feet.  He cries he is in so much pain.  He had aching joint pain before, but nothing like this.  Also, he had this consistant dry cough before he was diagnosed and that is back along with more rectal bleeding.  My instinct was saying that we were lowering the prednizone too fast, but what do I know?  Does anyone else have this problem with the cramping?  Or advice on tapering off medication?  Our dr doesn't seem worried, he has no diarrhea, stomach pain or weight loss.  But, I'm worried!  Bless you all,

Courts mom

 Reply posted for momneedsinfo.

As we all know, we love/hate prednisone... love it because it almost instantly gives our kids relief, but hate it because of all the side effects.  My 14 year old son was diagnosed in Jan with crohn's and put on pred right away and felt better.  Within days he had so many side effects he told me he'd rather have the cramps. He went 40mg down to 20 and stayed on that for 6 months - I told Dr. no more, so he tapered him down to 5mg over a 1 month period and then off totally.  My son had headaches, dizziness, upset stomach, and severe joint pain - so bad that he couldn't get out of bed.  I called our family dr and he said it was pred withdrawal and put him on a "burst" as he called it.  20mg for a week, 10mg for a week, 5 for a week, 5 everyother day, then 5 every 3 days, then off. It worked like a charm!  He is now on asacol and until a couple of weeks ago was ok - he had been keeping it from us because he is afraid of being put back on pred.  My advice would be to talk to your dr. and if he is no help check with family dr or ped -  they look at the whole picture not just the GI part....I love our family dr!!

 Reply posted for momneedsinfo.

My daughter was experiencing the exact same thing as your son is....she was steriods for 6 mos. When we decided that they were making my daughter worse instead of better, we tapered them 10 mg at a time from 60 mg until she got to 20 mg then it was 5 mg until we reach 10mg and then 2.5 mg until we were done....My daughter had horrible pain, couldn't sleep, short of breath, headaches and had no core muscle strength ( her back hurt all the time) . I wish I had never let them keep her on them so long...If they are not working ..STOP!!! Way too many side effects...after trying steriods,  ascol and pentasa therapy, then imuran we have finally been using remicaid with good results. I still have big concerns about a lot of things but my daughter missed 7 months of her freshman year, she now has made it through 3 months of her sophomore year including homecoming!! That's a big step forward from where we were this time last year!!! 

 Reply posted for momneedsinfo.

My daughter has UC.  She was on pred 3 years ago.  She started on 40mg and tapered 5 mg each week until she was on 2.5mg and then stopped.  It was over a period of a little over 2 months.  If I'm reading your post correctly it seems like your son started at 60mg and then your doc dropped him by 20mg in 2 weeks and then the following week by another 10mg.  I don't know if maybe that was reduced too much and maybe that's why it effected your son.  My daughter had reactions to the pred, horrible moodiness, very bad acne (she always had acne but it got extremely inflammed and much worse), she couldn't sleep and had lots of energy.  She did watch her sodium intake so she wouldn't gain weight.  She only gained 2 pounds while she was on it.  The doc told her not to have more than 2,000 mg of sodium so she read all the labels and wrote everything she ate down with the sodium content.  I hope your son is better soon.

 Reply posted for momneedsinfo.

def call your doctor. Not everyone tolerates weaning at the same rate-my son got headaches, felt like he was going to pass out and extreme fatigue. I think this def could be the result of weaning too fast. We are now weaning by 2.5mg a week x 2 weeks. Please call, your concerns are legitimate