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Old 11-12-2008, 08:07 PM   #1
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melmo1 HB User
Lupus and AVN... any advice please!

I have had lupus for about 2 years and I have been on a steriod the whole time becuase I had it so bad. Well I had chemo and they were finally telling me I could start getting off the steriod and then my hips started hurting so bad I could barely walk. I asked my doctor and he mentioned I might have Avascular necrosis, but he didn't think that was it. Well I went to orthopodist becuase it continually worsened and I have it in both shoulders and both hips. Has anyone had this problem and what did you do???? I am miserable and I have to walk all day. I am about to start an extern as an SLP on the acute floor at a hospital. By the way.. I'm 23 so I'm to young for any hip surgery. Any suggestions would be greatly appreciated!

 
Old 11-13-2008, 03:09 PM   #2
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Pumpkin95 HB User
Re: Lupus and AVN... any advice please!

I was in a similar position as you, running around the hospital all day long, when I was diagnosed with AVN. At the time, I had severe left hip pain and I was on crutches for 12 weeks and was not allowed to put any weight on that leg. I was prescribed high dose ibuprofen and was taking that 4 times a day and I was also taking a low dose of a stronger pain medication and those seemed to help. I did gentle exercises to keep the joint flexible but pretty much, I rested the joint. After 3 months, the hip felt better. Since then, I've developed AVN in my other hip and both knees. I've had to give up running to prevent further damage and I've been told I will probably eventually need surgery. There are several different surgical procedures, ranging from core decompression (for early AVN) to joint replacement (for advanced AVN). A friend of mine had her hip replaced for AVN and she says her quality of life has improved greatly. She is doing so well in such a short time after her surgery! I have also heard of people using bone stimulators / electrical stimulation to see if they can get bone to grow in the area. I've never tried it and don't know how effective it is. I've had to roll around the hospital in a wheelchair at times when I was too tired to get around on crutches and when the AVN started affecting both legs. Since you're in the rehab field, people around you would probably be quite supportive if that's what you needed to do. What has your surgeon recommended?

Quote:
Originally Posted by melmo1 View Post
I have had lupus for about 2 years and I have been on a steriod the whole time becuase I had it so bad. Well I had chemo and they were finally telling me I could start getting off the steriod and then my hips started hurting so bad I could barely walk. I asked my doctor and he mentioned I might have Avascular necrosis, but he didn't think that was it. Well I went to orthopodist becuase it continually worsened and I have it in both shoulders and both hips. Has anyone had this problem and what did you do???? I am miserable and I have to walk all day. I am about to start an extern as an SLP on the acute floor at a hospital. By the way.. I'm 23 so I'm to young for any hip surgery. Any suggestions would be greatly appreciated!

 
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Old 11-13-2008, 03:56 PM   #3
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JO ANNE HB User
Re: Lupus and AVN... any advice please!

Hi !!
I have had lupus for 8yrs. I have been on Prednisone 10- 20 mg at times. Now down to 3 mg. Last year I had to have a total knee replacement . After that I was fine for 6 months. Then slowly I started noticeing increased pain in my Rt. hip. I was thinking UH OH.. so my orthopeadist started doing a whole lot of special test trying to figure out where my severe pain was coming from. Not the back, but the hip... I started worrying that I had AVN. Whew! When I went back to my orthopeadist he told me I had osteoarthritis with median wear on my hip. I almost jumped for joy!
I continue to have severe pain in my hip. I figure that eventualy I will have to have the hip replaced. I found out at the same time I have osteoarthritis in all my joints, neck , back, hips.
I also think that if your orthopeadist thinks you should have a hip replacement, maybe you should give it some thought. You are young, and would bounce back quick. Don't live in pain if you don't have to.

 
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