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Crohn's Disease Forum » Your Story » Prednisone not working + Severe Joint Pain


04-11-2017, 11:53 AM   #1
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Prednisone not working + Severe Joint Pain

Hi there, I'm 14 years old and I've been diagnosed with Crohn's since I was six. I am currently having a flare up which consists mostly of cramps, diarrhea, and joint pain. I go to acupuncture every other week to avoid going on long-term medication, however I have Apriso I take as needed and was put on Prednisone for a week. None of these things seem to be helping with my current flare up. It started very mildly about two weeks ago and has gotten gradually worse up until now. I have not had a flare up this bad in a while, although my memory is very bad (possibly due to anemia which I have to get tested for soon) so I cant safely provide much accurate information on past flare ups. When I was first diagnosed at around age six and seven my Crohn's was generally worse than it is now, however after that it got better and has been fairly mild. What I'm trying to say, is that I have not had much experience with this level of flare up that I can remember due to just being young and memory problems, so I'm not sure what to do about the fact that no treatment has worked so far for me now.
Since I am young, I need a pediatric gastroenterologist, however there is not one in my city where I recently moved, so I have to get one a couple hours away. My normal doctor basically said that they don't know much about Crohn's, put me on Prednisone, and sent me away. I would appreciate any insight as to what it means when Prednisone doesn't have any positive effect on Crohn's symptoms, because my family and I do not know.
On to my second problem, joint pain. I have only had this problem in the very recent past, although it only got sever with this current flare up. Before I tried to control it by reducing inflammation by diet, now I basically gave up since it got so bad lol. I hoped the Apriso or Prednisone would help by fighting inflammation but it hasn't done anything besides worsen my insomnia and make me jittery. My joint pain has gotten so bad that I cannot walk normally, or walk up or down stairs. My knees hurt the most and if I walk too much the pain becomes worse and they become very stiff. However, other places also hurt such as my fingers, ankles, elbows, and lower back. Sometimes It hurts to write or type. I've only been to a normal doctor once for this a while back when it wasn't as bad, and their advice was to go on pain killers. However, the only one they thought I should take to avoid complications with my digestion was an opiod, and due to family history I am at risk for addiction and therefore couldn't take it. I have also always had a phobia of pills, however the pain got so bad I forced myself to take a couple of advils last week, I gagged them up the first few tries lol. My family and I don't know if joint pain to this extent is normal or if I could possibly be developing arthritis or something like that, I don't really know. Any insight would be appreciated, I have rarely been able to attend school throughout these past few weeks, although thankfully it is now spring break. Thank you!
04-11-2017, 01:32 PM   #2
ronroush7
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I would advise seeing a rheumatologist for the joint issues. Maybe you need to be on something stronger than prednisone for the Crohns.
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04-11-2017, 01:45 PM   #3
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I would get advice from a doctor first.
04-13-2017, 10:30 AM   #4
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Dear Yikes, I want to help you. I have had crohns for 31 years. I am a 53 year old mom with an 18 year old son. i know your pain!!! I want to discuss more with you but I have a doctors appointment I need to get to right now. I just don't want you to feel alone. I will try my best to give you as much information I have learned. Number one, do not take Advil, or any other nsaid medication for your pain as that can cause bleeding--all doctors have told me this!! If anythin,g for this moment I would suggest tylenol. Your parents need to know how bad the pain is. No-one can understand except for those with the disease. your parents are scared about the meds and they should be. At the same time you need help. I will get back in touch with you later. But please don't take anymore Advil and ask your parents to get you some tylenol for the time being. Relax and try to enjoy the rest of spring break, but i will be back in touch with you later. I know relaxing is very hard with pain. Try watching something funny on tv or find websites that make you laugh. I know there are some websites to help people laugh and that will help with the pain. TTYL
04-13-2017, 11:40 AM   #5
my little penguin
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My son was dx at age 7 as well and now is 13
He is currently on humira and methotrexate to control his Crohns and arthritis from his Crohn's disease.

Did the regular doctor prescribe your prednisone or your new pediatric GI?

If it was your regular doctor please have your parents call the pediatric GI .
If it was the GI please have your parents let the GI know your still having symptoms .
Sometimes prednisone needs longer to work if inflammation has been going on a while.

Most kids with Crohns need to take medicine every single day to keep things calm in their intestine .
Does your GI know you were only taking Apriso every once in a while ??
If not please be honest with the GI , they need to know when your are taking your medicine . The doctors don't get mad - it just helps them treat your Crohns better

My son has arthritis and to put it simply it really does hurt .
A rheumatologist can help you with treatment for joint pain -even if it's not arthritis .

For ds he uses prescription cream called volteran gel
He also takes a warm bath
Swims
Uses heating pads/ice
Daily stretching

The rheumatologist should be able to give you papers showing the right types of stretches and exercise


Tagging Maya142
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04-13-2017, 02:10 PM   #6
Maya142
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I would definitely ask your parents to make an appointment with a pediatric rheumatologist. Some kids have arthritis as well as Crohn's and other kiddos have joint pain (arthralgia) with their Crohn's. In either case, a pediatric rheumatologist can help.

Physical therapy can help with joint pain. A ped. rheumatologist will usually refer you to physical therapy or give you exercises you can do at home to help with the pain.

Ice and heat might help with the pain. My daughters use heating pads often. They also use Voltaren gel, which is prescribed by their rheumatologist. A TENS unit can also help, but again, usually you'd get it through your rheumatologist (but you can also buy them online).

Being in a pool also helps them when they're in pain. Swimming is really good for arthritis - low impact and it helps keep your joints moving.

In some cases, treating the Crohn's can make the arthritis/joint pain much better, so it is also important to follow up with your pediatric GI.

Make sure you tell your GI that you're not taking Apriso regularly. They need to know so that they know how to treat you.

Prednisone might take longer to kick in or you may need a higher dose. That's another thing to discuss with your pediatric GI.

I know it's a pain to travel to see a GI, but it is very worth it to get proper care. We drive two hours each way to see my daughter's pediatric rheumatologist. About 1.5 hours each way to see her ped. GI.

Good luck!!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-14-2017, 11:42 AM   #7
yikes
 
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My son was dx at age 7 as well and now is 13
He is currently on humira and methotrexate to control his Crohns and arthritis from his Crohn's disease.

Did the regular doctor prescribe your prednisone or your new pediatric GI?

If it was your regular doctor please have your parents call the pediatric GI .
If it was the GI please have your parents let the GI know your still having symptoms .
Sometimes prednisone needs longer to work if inflammation has been going on a while.

Most kids with Crohns need to take medicine every single day to keep things calm in their intestine .
Does your GI know you were only taking Apriso every once in a while ??
If not please be honest with the GI , they need to know when your are taking your medicine . The doctors don't get mad - it just helps them treat your Crohns better

My son has arthritis and to put it simply it really does hurt .
A rheumatologist can help you with treatment for joint pain -even if it's not arthritis .

For ds he uses prescription cream called volteran gel
He also takes a warm bath
Swims
Uses heating pads/ice
Daily stretching

The rheumatologist should be able to give you papers showing the right types of stretches and exercise


Tagging Maya142
Thank you! It was my regular doctor that prescribed me with prednisone. I took my last dose a couple of days ago and my symptoms have gotten somewhat better. I went to my regular doctor today again, however I'm not going to be able to see my pediatric GI until June. From there, I'm going to get referred to a rheumatologist from there. Thank you for the advice!
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