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Crohn's Disease Forum » Parents of Kids with IBD » Asacol and Muscle pain?


03-24-2013, 11:23 AM   #1
Brian'sMom
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Asacol and Muscle pain?

Anyone else's kiddos experience muscle pain with Asacol? It started in his thighs and now is in his arms. He seems surprised at how much it hurts. He was active on Wednesday (Its sunday now) so I dismissed it as being active. Its been cold here and snowing since and he's just been sitting around. This morning was first day of arm pain..... He's on 400mg 2x a day
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
03-24-2013, 11:37 AM   #2
my little penguin
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DS has arm and leg pain and is on asacol 800 mg x2 day.
But it is hit or miss and not drug related as far I can tell
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03-24-2013, 11:55 AM   #3
my little penguin
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Btw what is his weight ?
Just curious since his dose is so much lower .
DS weighs 70-72 lbs
03-24-2013, 11:58 AM   #4
Brian'sMom
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Brian is 65 lbs. He just got off the couch and looked like he was 90 yrs old! I wonder if his body will get used to it. He's also on Mesamaline enemas at night as of Saturday. Sunday was his worst day he said (for muscle pain). It all came about upon new meds...

Last edited by Brian'sMom; 03-25-2013 at 09:39 AM.
03-24-2013, 05:06 PM   #5
Dexky
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Wow, no nothing like that here. And that is a very low dose. EJ was on 800mg X 3 daily. Now he does 800 X 2.
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03-24-2013, 06:53 PM   #6
Brian'sMom
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That's what I'm seeing...small dose! Maybe he's one of a small percentage having issues. Argh!! I was excited that this would fix everything. The enemas are Rowasa, but he was having leg problems before accomplishing one of those. Kinda wierd, he slept all night with no problem and next morning got up...it was an hour before we said to try and get the enema to drain out by sitting on the toilet. Not what I was expecting. I had plastic on the bed etc... This afternoon his back started hurting. We had to help him sit up...walk to bathroom...move! We haven't given him anymore of any of it until I talk to the doctor. He's never had this kind of issue. His inflammation isn't that high either
03-24-2013, 07:10 PM   #7
Brian'sMom
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Just another piece to this puzzle...He got a fever of 101.3 in the last hour. His muscle pain is getting better he says. I don't know if he's sick or this is all side effects. Fever is one of them listed. I guess time will tell. It'd actually be good if this is just an illness...but he's never had something that did this to his muscles...and legs have been hurting pretty bad since first dose of Asacol. That was 5 days ago
03-24-2013, 07:12 PM   #8
my little penguin
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Did you call on call GI?
any fever over 100.5 with out obvious illness warrants a call per our GI instructions?
hope he feels better soon.
03-24-2013, 07:38 PM   #9
Brian'sMom
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I called earlier in the day. No fever at that time. On call GI said to stop new meds until tomorrow
03-25-2013, 05:10 AM   #10
Dexky
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I hope he's feeling better this morning Kathy! Of course, I don't know how you're going to know whether it's the Rowasa or the Asacol? Do you think you will re-intro one or the other?…or wait and see what the GI thinks?

Say good-night Roy!!!
03-25-2013, 07:59 AM   #11
QueenGothel
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My DD had back and joint pain the entire time whilst taking Mesalamine. The fevers make me wonder if the Mesalamine is in fact causing a flare. Though rare it happens more often in kids than adult. Is you child taking Predisone as well?
03-25-2013, 09:37 AM   #12
Brian'sMom
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No prednisone. And one dose of tylenol took care of the fever. Went to bed with normal temp (4 hours after the 1 dose of tylenol) I gave him another dose just in case before he went to sleep. I touched him at 6 am this morning and he was cool to the touch. He's still sleeping and want him to get some good rest but I'm anxious how his muscles feel this morning. Before bed he couldn't even undress himself without wincing. I'm putting in a call to GI once he's up and I can see how he's doing this morning. I just wish this crohn's would give him a break for awhile. How about some remission for this child!!



Mark, I'll gladly say goodnight to Roy! During his time at KU a national championship was 'the monkey on his back', Now playing KU seems to be! HA My parents and my little bro loved him...even now. They even had a parakeet named Roy! I, for some reason, didn't like him (not talking about the bird, he was ok ). Roy's a good coach...just something about him. I've always really liked Coach Self.
03-25-2013, 10:04 AM   #13
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Hope he feels a bit better once he wakes up. No experience with muscle aches sorry. A nice warm bath and/or hot water bottle might help symptoms if not the cause. Glad the temp came down!
03-26-2013, 07:58 PM   #14
Brian'sMom
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Better this morning. After school no pain. (3 days without Asacol or Rowasa). Tonight we start back on Rowasa enema. (He only did one enema so its most likely not the problem)
03-26-2013, 08:46 PM   #15
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Do you think you'll give the Asacol another try?
03-26-2013, 09:35 PM   #16
rygon
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Im wondering if it is to do with the crohns instead? Maybe he is missing out on electrolytes ( thinking salt potassium magnesium etc). I know when I get D and in a flare I get really bad pains in my feet, legs and hands. Drinking stuff like dioralyte helps a lot
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03-26-2013, 09:53 PM   #17
Brian'sMom
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Do you think you'll give the Asacol another try?
The GI nurse said the doctor will probably want to try it again. But this time one at a time. She said we'd wait 2 weeks and See how the enemas go. (She said the medicine goes right where its needed and that's the goal right now). Then if all is ok, add in the Asacol and see how that goes.
My methotrexate advice thread kinda turned into this one too!(I guess I should stop posting there since Metho is out of the picture right now but I've gotten some asacol advice there too). I mentioned on it that after school Brian wanted to play 'snow football' with some big neighborhood kids! I am like "Really??!!" NOT No variables...had the whole tennis/basketball thing last week. Funny Kid!
03-27-2013, 05:57 AM   #18
Dexky
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I think Rygon has a good point. It's often easy to overlook simple causes like hydration issues!
03-27-2013, 08:32 AM   #19
Brian'sMom
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True. Does the clean out process before a colonoscopy cause a hydration issue? He did 13 doses of Miralax before it looked clear. That's 6 oz liquid with Miralax and 6-8 oz of liquid without it each hour. But all the while, diarrhea.
03-27-2013, 10:45 AM   #20
QueenGothel
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The problem we had with Asacol... I think...was that my kid got constipated so we hit her with the Miralax and then she pooped out like 10 Asacol shells all broken open, all in one day. So it was like an OD of the medication and then the Canasa suppositories as well. Just an FYI as to keeping things moving to try to avoid this from happening. I don't know what your sons bathroom habits are like.
03-27-2013, 10:07 PM   #21
Brian'sMom
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The problem we had with Asacol... I think...was that my kid got constipated so we hit her with the Miralax and then she pooped out like 10 Asacol shells all broken open, all in one day. So it was like an OD of the medication and then the Canasa suppositories as well. Just an FYI as to keeping things moving to try to avoid this from happening. I don't know what your sons bathroom habits are like.
Interesting you mention this. Today is the first poop since Saturday!

So far so good with the Rowasa. The inflammation around the outside area of his butt us completely better...makes me think the inflammation in his rectum must be getting better. At least I like to be thinking this is what is happening!!
03-28-2013, 12:55 AM   #22
CarolinAlaska
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True. Does the clean out process before a colonoscopy cause a hydration issue? He did 13 doses of Miralax before it looked clear. That's 6 oz liquid with Miralax and 6-8 oz of liquid without it each hour. But all the while, diarrhea.
Is this a rhetorical question? Yes! The clean out process definitely creates a hydration issue! I'd be checking his 'lytes and mag and all that. Hopefully since he's had some time to recuperate, that won't happen again! What a great thought - Mark, was it?
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
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