anyone else have avn?

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Regular Member

Date Joined Oct 2003
Total Posts : 262
   Posted 3/25/2007 11:47 PM (GMT -6)   
does anyone else have avascular necrosis from the lupus?  i have it in both knees, they have used arthroscopy to clean out the debris and stuff (with my right knee they took out all the cartilage and made the bone bleed to make more, at least that's what i was told) and that was in the '99 and '02 and now the docs all say the same thing, that i have to wait as long as physically possible before they replace my knees because that is the only thing left that they can do, i was almost gonna do the arthroscopy again for my left knee but the debris in it moved and it doesn't bother me as much, but the pain from the avn is awful and unfortunately these are one of those things that even painkillers can't help, oh lucky me, but i was just wondering cuz i've never really "heard" anyone else talk about it before and i was just curious cuz if anyone who does have it, has any suggestions on what to do about the pain i am all ears.
Hugs and prayers,
diagnosed in May '95 with lupus, nephritis, hypertension,hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D

Forum Moderator

Date Joined Nov 2003
Total Posts : 7164
   Posted 3/26/2007 4:44 PM (GMT -6)   
I have avascular necrosis in the heads of both femurs. It is thought that it is a result of all the steroids I had for my asthma OR a result of Crohn's disease itself. Either way, the AVN is currently inactive and the femurs are stable. The damage covers approximately 30% of the femoral head. First [and last] orthopod wanted to do immediate hip replacements. The hip pain was totally relieved when I began Remicade for the Ankylosing Spondylitis. Canceled the hip replacement. When and if the hip pain returns, I will seek another opinion.

Sorry your knees are giving you such problems. Since my hip pain was related to the AS, my pain advice might not be relevant. I was taking Tramadol and had Vicodin for breakthrough pain.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, peripheral neuropathy, Sjogren's Syndrome ?

New Member

Date Joined Jan 2007
Total Posts : 5
   Posted 3/26/2007 8:35 PM (GMT -6)   

Hi.  I was diagnosed with AVN in both hips back in November.  I have had lupus for 17 years now, so the steroid use is what has caused the AVN.  And yes, it hurts!!!  I have been on crutches and am awaiting surgery.  The first surgery is April 10th, then they will do the other hip on May 29th.  They are doing a core decompression with fibular graft, to both hips. (Drill out dead bone in femur head, and put in bone graft from my fibular bone in leg)  Doctors don't want me to have hip replacements since I am still pretty young (37 years old) and the hips only last 10-15 years.  Wish I could do nothing, but it is pretty far advanced and may collapse anytime.  Then I would HAVE to have hip replacements.

As for pain, I use Voltarin and Darvocet as needed.  And I have been swimming almost everyday- which has really helped.  Hopefully that will help me heal from my surgeries too, cause I am so scared!!  Lets just hope my lupus stays quiet while I fix my hips!

Diagnosed SLE 1990, vasculitis 2005, avascular necrosis 2006. Plaquenil 400mg, prozac 10mg, voltarin, neurontin 300mg, ambien 10mg for insomnia

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