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Anybody experience bone pain with Pred.?

My 12 year old son was diagnosed in July with Crohn's. GI wanted to prescribe prednisone right away. I asked if he could use entecort instead to which the GI agreed. Really no side effects other than feeling lightheaded in the morning. Had been taking that for 7 weeks up until yesterday. Initially it was helping alleviate the bleeding he was experiencing. More recently in the last couple of weeks bleeding started picking up again and his SED rate went from 9 to 26. GI said we needed to switch to prednisone. Yesterday morning took his first dose of 40mg, by last night he had severe bone pain in his left shin to the point he was crying. Have a call into the GI's office but haven't heard back from them yet. Called the pharmacist and she didn't think it could have caused pain that quick. Has anyone else's kid experienced this type of bone pain due to prednisone? Seems too coincidental to me for it not to be the cause. Thanks
 
Hello my 8 year old daughter suffers from joint pains so bad that she is screaming and her gi said that crohns disease can cause joint pains. My daughter was not on prednisone then but her just put her on it to help with her flare up and joint pains. Hope this helps!
 
Thanks for the response. Son's isn't in the joint, it was more like inside the bone hurt? I think the prednisone caused it, but I'm just guessing. Saw your other post regarding 6mp. My son has been taking 50mg a day for the past 3 weeks I believe. Takes up to 3 months to be effective at maintaining remission, which we haven't achieved yet. My understanding is you also need to be diligent about blood tests to make sure the liver isn't being affected. Still in the early stages of learning regarding the disease and the medications.

ALTL
 
Yes! My son has horrible shin pain if he takes more than 20mg of pred a day. The doc wanted him at 40mg but the shin pain was too bad so I dropped it until we found a more comfortable dosage. Wonder if that's an option for your guy?
 
Thanks,

GI's nurse just left a message while I was on another line. They didn't believe the prednisone could cause the pain that quickly. I figured that's what they'd say, but I'm glad to hear that it's happened with others so I have a little more ammunition when I tell them they're wrong. I'm sure that will go over well.
 
It could be bone pain, but I recently was on Predisone and it was muscles contracting like a charlie horse in my shins, then spread to my feet and hands. Calsium suppliments worked almost the next day. not certain if that would be the caause but for the age I woulld not be able to guess a dose

Murray 54
Diagnosed 1991
 
ALotToLearn,
Hi and welcome to the forum. Make yourself comfortable, you are among friends whom can relate.
My name is Angel and i suffer myself, not my child, but I'd like to ask a few questions then offer some advice if you don't mind. I'm in the middle of 5th month diagnosis and have done extreme research, as it benefits me as well as my career and customers. I'm a pharmacist so if you ever want an explanation or have questions, please feel free to "PM" me thru my profile.
To help with drug management, how much does your son weigh? This has a huge bearing on different options for current treatment. Is he staying well hydrated? We have a tendency to get more dehydrated in winter than summer, which most don't realize. What exactly are all his symptoms? Does he bruise easily? If so, has he had platelets tested in his blood work? This could have quite the bearing on bone pain. Is he on any supplements along with his prescribed meds? Have his vitamin/mineral levels been tested? How's his appetite? All these, plus many more have an influence on his symptoms/pain. Wish the best for you in this journey. Please remember, you are never alone. The support here is tremendous. :hug: Best wishes and prayers with you. Angel
 

my little penguin

Moderator
Staff member
You can get bone pain from pred but you can also have bone pain just from flaring crohn's.
Even on pred it will still be flaring since inflammation takes time to go down.
It can also happen suddenly with crohn's. bone pain is an EIM and is very common in Ibd.
DS has it . It gets worse when his Ibd is worse.
It took us a year it different drugs including two courses of pred and one of EEN before we finally got under control on remicade.
It is a long battle so you have to be patient.
Hot pads and little pillows helped my son.
Hugs
 
Sorry to hear about your son. I haven't any experience with pred so am not sure whether it causes pain or not. Has his GI mentioned EN at all? It has no side effects and is supposed to have the same results as Pred. The only difficult part is getting the kids to have the liquid only diet for 6 - 8 weeks, but alot of kids on here have managed (my son did his through the NG tube). It might be worth asking about it! Hope he feels better soon.
 
Thanks for all of the responses everyone! I suppose it was just the Crohn's causing the pain and not the pred but it was quite the coincidence that the first and only time it occurred was the same day he started on pred. He weighs roughly 90 pounds and the nurse said they prescribed 40 mg of pred. based on his weight. He's had two blood tests so far. I honestly don't know all they are testing for? Haven't gotten a handle on all of this yet. The GI, (and a second opinion GI) both mentioned that EN is an option for treatment. Not eating at all seems very extreme to me. Especially at the age of 12. I'm extremely impressed with those of you and your children especially that have been able to do that! In addition to the pred and 6mp he's taking a prenatal vitamin as recommended by the GI. His next blood appointment is Monday, but it usually takes another week before we hear the results. The thing I have trouble with is the Dr.'s telling him he can eat anything he wants. If EN works because your not eating, doesn't it make sense that watching what goes into the gut would have an impact as well? Just got the SCD book today and am planning on getting my son to get going with that. I will follow the diet as well. Sounds healthier anyway. Not sure if we'll get the whole family to follow along though (3 other children and spouse)? Thanks again for response.
 

my little penguin

Moderator
Staff member
En doesn't work because you don't eat.
It works because the proteins are so broken down only the first few inches of intestine are needed to be healthy to absorb the nutrients .
The rest of the gut then is allowed to heal .
It can be used as EEN where you eat nothing else or it can be used in addition to pred / 6-mp where all the Extra nutrients he would be having trouble absorbing from real food can easily get into the system.
DS still drinks a half dose and will continue until he is done growing.
I know you may think no food is extreme but bone loss, diabetes etc .., are also extreme from pred use.
 

my little penguin

Moderator
Staff member
Just to give you an idea of how well supplementing works.
DS was only 50 lbs for over two years.
With EN he gained close to 20lbs.
It does taste bad but like all his other meds he doesn't get to chose.
Dr ordered so for him it is medicine period.
Good luck
 
I take pred. 120 mg every other day. I get pretty severe bone pain. Usually in my hips, legs, and sometimes lower spine. I take the medication in the morning and then by evening I am in terrible pain. We have tried lots of stuff like Tylenol and things as heavy as percocet (sp.) and nothing seems to really help it. But, since the doc put me on it every other day rather than every day I only have the pain every other night. A lot of times it is bad enough that it keeps me up most if not all night.
 
Oh katiek, do you have to b on that high of a dose? Over periods of time pred can cause bone loss. Starts in the hips, bad news hun. Muah- hugs-
 

Catherine

Moderator
We haven't any leg pain with pred but she has never been on more than 30mg, she was 44kg when she started her first course at dx. She is currently on second course but her weight at beginning of this course was 60kg.
 
Right now I am on it because they just discovered that I also have iga nephropathy. Which basically means that my immune system is also attacking my kidney. I am down to 44% kidney function and this started less than a year ago. So, if I have any hope of saving or holding off on kidney transplant and dialysis I am going to take as much as they tell me to. I am also on vit. D to help with the calcium issues and I get regular bone scans because I have taken pred. off and on since I was 4 or younger due to Crohn's and asthma.
 

Spooky1

Well-known member
Location
South Northants
Wow, that is some dose Katie. I must say as far as pred pain is concerned, i also cried with lower spine and leg pain. Omg, the agonies. but surely everyone had that with pred? It just seems to go with the territory. However, my joints are excruciating with crohns too. My neck and spine are painful to move. Driving is a problem now, also with knees and hips.
 
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