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Osteonecrosis (Avascular Necrosis) caused by Pred

  • CindyAnn
  • Topic Author
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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12 years 6 months ago #32074 by CindyAnn
Osteonecrosis (Avascular Necrosis) caused by Pred was created by CindyAnn
I was wondering how many of you have been diagnosed with Osteonecrosis (Avascular Necrosis) caused by Prednisone?

I have SEVERE Pain in my hips to the point of not being able to put my own socks on :(
I have been off Prednisone for 7 weeks (this is the third time in the last 12 months) and about two weeks ago the pain started and it will not go away.

If so - how has your hemo/pcp treated it?
Is there any hope of it just going away?

Soooooo tired of the side effects - they just keep coming :S

Cindy Ann
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 6 months ago #32075 by Sandi
Replied by Sandi on topic Osteonecrosis (Avascular Necrosis) caused by Pred
Cindy:

The few people that I have seen with Avascular Necrosis over the years had to have a hip replacement. The hemo didn't treat it.

I'd see your GP and go from there. It's possible that you don't have it. I've had severe hip pain too and for me, it was Lupus. It could be anything...even Prednisone withdrawal.
  • CindyAnn
  • Topic Author
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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12 years 6 months ago #32076 by CindyAnn
Replied by CindyAnn on topic Osteonecrosis (Avascular Necrosis) caused by Pred
Thank you Sandi

I see a new Hemo tomorrow (Terry Gernsheimer, MD, from this site :) )
I will follow up with my pcp after that - I sure hope it is something other than Osteonecrosis (Avascular Necrosis).

Cindy Ann
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 6 months ago #32078 by Sandi
Replied by Sandi on topic Osteonecrosis (Avascular Necrosis) caused by Pred
Me too! Good luck!
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 6 months ago #32087 by dru
Replied by dru on topic Osteonecrosis (Avascular Necrosis) caused by Pred
A few years ago after a prednisone taper I developed severe left hip pain. My hema ordered an x ray because of the possibility of avascular necrosis. But it turned out for me to be joint pain associated with steroid withdrawal and it gradually got better.
  • CindyAnn
  • Topic Author
  • Offline
  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
More
12 years 6 months ago #32102 by CindyAnn
Replied by CindyAnn on topic Osteonecrosis (Avascular Necrosis) caused by Pred
Saw - Terry Gernsheimer, MD, from this site :) yesterday - Running several test over the next couple weeks - I have my fingers crossed that it is only withdrawal from the wonderful drug (sarcasm) Prednisone!!

I wanted to say because of this site I found - Terry Gernsheimer, MD - What a GREAT!!! doctor - spent about an hour with me discussing all the options and we will plot a wait and see path - finally a Dr. who doesn't react to just counts!!!

This site is invaluable - and all the members make living with ITP a much more bearable ordeal - THANK YOU ALL!!!!

Cindy Ann
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 6 months ago #32104 by Sandi
Replied by Sandi on topic Osteonecrosis (Avascular Necrosis) caused by Pred
I'm so glad that you found us and that it's been beneficial. Good luck!
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12 years 6 months ago #32105 by Ann
Replied by Ann on topic Osteonecrosis (Avascular Necrosis) caused by Pred
Terry was at the first, or was it the second, I forget, UK patient conference I attended and she was obviously very patient orientated and right up there with the best. So you should do well with her. Once you find a good doctor it really makes things far less daunting and all the stress just falls away.

Good luck.
The following user(s) said Thank You: Vdeutsch85
  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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12 years 6 months ago #32108 by karenr
Replied by karenr on topic Osteonecrosis (Avascular Necrosis) caused by Pred
When I complained of hip pain after quite a few years on prednisone (though not high doses), my orthopedist told me he thought I had bursitis--but he agreed to run an MRI. The MRI showed I did not have avascular necrosis. (It did show, however, tumors on my ovaries, which resulted in an oophorectomy pronto!) The bursitis diagnosis was apparently correct, and I haven't had that pain recur.
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