Hi everyone

Just posting to ask if anybody else has bad problems with there bones and avascular necrosis. I am seeing 3 different orthopaedic consultants. I was left for quite a few months on 30 mg pred and my consultant left warrington hospital and they didn't replace him straight away. I was left for about 6 months not seeing anyone, then when Dr Salih started I had lupus nephritis and osteoporosis. But because it was about 18 years ago I can't do anything and I blame them for the pain I suffer everyday. Sorry need to winge. hahahaha.

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  • Gazzasoens, My experience started about 26 years ago. I was on varying amounts of prednisone from the 80s to the present. Prednisone is the drug of choice if lupus is active. The doctors are not as informative as I would have wished but then I don't know what I would have done either. Without it, I have been told I would be dead. As soon as the lupus activity settled the bones began acting up, couldn't walk to the break room, etc. Couldn't' sleep woke up with hip pain. Doctor sends me to the orthopedic surgeon. He replaces one hip then the other, does "something so I won't need my knees replaced". I believe only 5% on prednisone are supposed to have these issues. How did I get so lucky? A less than brilliant doctor determined I didn't need the prednisone, and instructed me to begin reducing it. I didn't do it immediately but the doctor should know so I did. I find myself on a dialysis unit waiting for a biopsy of the kidneys, nephritis. Next the shoulders go. I find a surgeon to replace one shoulder then the other. The left hip needs a revision, back in the hospital for a hip. Next, an inexperienced rheumatologist tells me to begin reducing the prednisone. My guard is down and I do it. My adrenal glands fail. 2 hospitals and a nursing home do not figure it out. My former rheumatologist makes a guess and slightly increases the prednisolone. ( Medrol which is not supposed to be as hard on the bones) I walk around with a fractured upper back rib for the better part of a year. The orthopedic surgeon is only interested in the shoulder which is causing pain $$$, barely commented on the rib fracture. Further osteoarthritis and AVN caused the prosthesis to pull out of its socket. I get a second opinion. The shoulder replacement cannot be revised. A reverse shoulder replacement cannot be done, not enough bone.

    30 mg of prednisone is and isn't a lot. You don't know whether a physician would have kept you on it either. You might have my issue with osteoarthritis in the family, I've been told: "you can't buy your genes." Prednisone, miracle drug that it is causes AVN. You might count yourself lucky if you regained kidney function. I would investigate whether you are a candidate for Forteo. This is the only medication known to build bones. I'm on my second round but Oops, it can cause bone cancer. Maximum recommended time it 2 years. I was off it but the osteoporosis is so bad that I'm back on it 6 months and counting. Something will do me in anyway.

  • Hi, I was wondering if you or your doctor think Forteo helped your AVN? I have AVN in both knees (so far) caused by prednisone trying to manage crohns diseases. My doctors want me to try Forteo for my AVN even though I don't have osteoporosis.

  • Greetings Gazzasoens,

  • GreetingsL-2ay4u. Swift reply. Lol. X

  • Hi, Gazzasoens--

    Oops, looks like I posted just your name! Yes, I have had quite a few issues like that. After having Prednisone at high doses for a few years ( starting w. 60 mg. for months, then down to 20 and later getting huge boli in drips combined with Cytoxan), my pelvic bones suddenly caved in on the right side. Next, my L. foot broke just from walking to care for my husband in hospital (he had cancer). I finally had a bone eval with a specialist who was very enlightening, revealing that I had other fractures that could open up if I fell, causing

    misery. He explained that all my fractures ( into post menopause) had been caused by steroids and that Avascular Necrosis did *not* just affect the hip, as many doctors thought. A.V. could be found anywhere! After his eval, my dose was taken down further and I took bone- restoring meds like forteo and miacalcin (sp?) along with calcium citrate plus Vit D3 4x per day.

    I still have delicate bones (w. spine degeneration and pain). Since then, my rheumatologist retired and I haven't found a good replacement. However, I feel blessed that I was still able to bring the steroids down to 5mg daily and seem to have stopped new fractures, despite being on steroids for 20 years now. So, despite being calcium deprived as a child and losing a lot of bone after the age when bone retoration stops--I somehow got to a point where I could walk using a cane or scooter to prevent falling. With the bone risks I've had,I do feel very fortunate! Vitamin D3 and Calcium were also very helpful, but the credit must go to God.

    Best Wishes,

    Annie

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