PLEASE read..painful joints? Taken Prednisone??

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Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 4/12/2008 1:26 PM (GMT -7)   
Can we talk about this? 
 
I'm writing today to give anyone suffering with joint pain a heads up and to encourage you to be your own health advocate.  I frequented this board alot when my daughter suffered from UC (had a total colectomy and jpouch) and found this to be such a wonderful, supportive site with compassionate people who so willingly share information to help others...I want to do the same.
 
My daughter (21) was recently diagnosed with avascular necrosis/aka osteonecrosis...meaning bone death which was caused by steroid treatment.  She had a mysterious knee pain, swelling etc.  We thought it was arthritis setting in because of her UC.  Her rheumatologist suspected it too but did an MRI just to rule out a mechanical problem.  That's when they found that it was not arthritis, but AVN/ON.  It's not detected on regular xray until the bone starts to collapse.  Please insist that your doctors send you for an MRI to rule this out and if caught early, there are minor surgical procedures that can help in the treatment, otherwise, you don't know you have it until the bone becomes brittle, fractures and pain sets in.  That's when the doctors say that you now have osteoarthritis and can't do anything except recommend joint replacement. 
 
They tell those who are taking Prednisone to take extra calcium and vit D to prevent osteoporosis, but they don't tell you that you risk getting AVN/ON.  It's a devastating bone disease and you deserve to know that this is a risk...so that you can have informed consent...we didn't and I feel so cheated by the medical community and now my daughter is facing at least 2 joint replacement surgeries per affected joint because of her age.  How many other UC patients are walking around with this and don't know it until they feel pain in their hips, knees or shoulders (most common joints affected)??
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
****************
VSL #3
21 yo Daughter diagnosed with bilateral knee AVN
and right elbow AVN


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/12/2008 1:39 PM (GMT -7)   
I had it in my right shoulder, and ended up with two surgeries.

The pain from this for me was profoundly different from my usual UC joint aches and pains, which I've had since long before I ever saw Pred. This was a very deep, gnawing pain that made me hurt from the middle of the back of my head all the way to my waist in back.

Fortunately, a minority of us get this, but it's another reason not to be on Prednisone any more than absolutely necessary. And for those who take Entocort because it has "less side effects," I was on and off Pred for a while, then put on Entocort for a couple of years because I was steroid-dependent.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 4/12/2008 1:51 PM (GMT -7)   

Thanks for replying Judy!

Are you sure it was just in your right shoulder??  I'm not trying to scare anyone...just raise awareness.  My daughter does not have pain in her knees now, but it's there.  Her right elbow is very painful off and on, and it was just found in her hip...which she has no pain yet.  We're MRI'ing all of her joints and can't begin to put into words to how devastated I am for her.  I am dreading the pain that she'll feel-as you described, I hear it's pain that compares to bone cancer.  I have found a surgeon in Maryland who specializes in avascular necrosis and he's asked us to evaluate all of her joints and send the imaging to him for evaluation.  His specialty is preserving the joints before they collapse which is very non mainstream treatment for this.  I pray that he can help prevent the kind of pain that you describe. 


20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
****************
VSL #3
21 yo Daughter diagnosed with bilateral knee AVN
and right elbow AVN


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 4/12/2008 1:54 PM (GMT -7)   
How long was she on pred? I am so sorry she is having to go through this. Keep us posted!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 4/12/2008 2:24 PM (GMT -7)   
She was only on Pred for 4 months...she started out on 60 mg...went in the hospital - IV solumedrol at 90 mg and then flown to Boston for surgery and I'm not sure how much she was on there until she had her colectomy. Yeah, thanks Tabitha, more than anything in the world I wish she didn't have to face this. Life is just so unfair sometimes....
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
****************
VSL #3
21 yo Daughter diagnosed with bilateral knee AVN
and right elbow AVN


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/12/2008 3:24 PM (GMT -7)   
Buckeye, I have enough other joint issues that I've had just about every joint in my body MRI'd. So I know the others aren't AVN, but bursitis or post-traumatic arthritis or UC arthritis or osteoarthritis or tendonitis. My musculoskeletal system stopped loving me when I was in my 30's.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 4/13/2008 5:01 AM (GMT -7)   
That's good that it's nowhere else! So, your shoulder surgeries...did you have joint replacement?? Did the surgeries help reduce or get rid of the pain you felt? I appreciate any insight you can give me. It's nice to talk to someone who's walked through the fire....
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
****************
VSL #3
21 yo Daughter diagnosed with bilateral knee AVN
and right elbow AVN

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