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AA Aplastic anemia

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  #1  
Old Wed Oct 28, 2009, 03:23 PM
leeslay leeslay is offline
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AVN

Has anyone been tested for this? My Dr. wants to do an MRI to check for it because my lower back, hips and knees have been very sore. Percocet doesn't even help the pain.

Thanks
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Lee-39 years old-AA,PNH and chromosome 12 disorder-1 rabbit ATG treatment and 1 horse ATG treatment. Getting my bone marrow transplant on November 23, 2010!!!! Counts as of 12-27-10 HGB 12.0, WBC 7.8, platelets 80, Neut# 3.9(12-24-10)!!! Just a touch of GVHD but back home!
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  #2  
Old Wed Oct 28, 2009, 06:17 PM
Laura Laura is offline
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I was tested for it when I had severe shoulder pain. They did an MRI and found I had bursitis instead.

Good luck. I hope it isn't AVN.

Laura
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  #3  
Old Fri Nov 13, 2009, 10:14 AM
Ari Finander Ari Finander is offline
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What treatments have you had that might predispose you to osteonecrosis? High dose corticosteroids can cause it, as can iron overload. Iron overload took both my hips, and I ended up with sites of osteonecrosis in my knees and left wrist. However, these secondary sites seemed to get better when we got my iron down and started me on Actonel to strengthen my bones (I was osteoporotic with multiple fractures at the time, too - the bone density was fine when the hips died, though). An MRI will show what the doctor needs to see.
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  #4  
Old Fri Nov 13, 2009, 06:33 PM
leeslay leeslay is offline
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AVN

I did rabbit ATG and took prednisone for a few months. My Dr. says that ATG can cause AVN. I had an MRI last week and will talk to my Dr on Monday about the results. My Dr did say something about Iron Overload too, did it affect any of your organs? How did they test for that? What treatments options do you have for that? Sorry, it seems like when people actually go through things they have more "real" opionions.
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Lee-39 years old-AA,PNH and chromosome 12 disorder-1 rabbit ATG treatment and 1 horse ATG treatment. Getting my bone marrow transplant on November 23, 2010!!!! Counts as of 12-27-10 HGB 12.0, WBC 7.8, platelets 80, Neut# 3.9(12-24-10)!!! Just a touch of GVHD but back home!
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  #5  
Old Sat Nov 14, 2009, 09:24 AM
Ari Finander Ari Finander is offline
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Quote:
Originally Posted by leeslay View Post
My Dr did say something about Iron Overload too, did it affect any of your organs? How did they test for that? What treatments options do you have for that? Sorry, it seems like when people actually go through things they have more "real" opionions.
Yes, it damaged my heart and possibly my liver and pancreas. The heart was tested using ultrasound, ECG, and angiogram. I take a nitro type pill twice a day to help deal with some of the issues, and try and keep myself fit and healthy to avoid the problems getting worse. My coronary arteries are apparently 'just beautiful', but the heart muscle is another matter.

My liver is going to be biopsied next year to assess any lasting damage. Getting the iron out saved it.

My blood sugar began having issues with regulation in 2005 (the year we got the iron down) so the pancreas may not be in tip top shape, either.

We should have put a central line in (port) YEARS before we put in a temporary trilumen catheter in 2005 in order to do 24 hour desferoxamine infusions two days on/one day off (it would have made transfusions easier, too). Oral iron chelators weren't available here in Australia except in clinical trials during 2005.
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  #6  
Old Tue Nov 17, 2009, 10:13 AM
Lbrown Lbrown is offline
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Is AVN avascular necrosis? I don't know much about that. My dr wants me to try ATG.
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  #7  
Old Tue Nov 17, 2009, 11:20 AM
Hopeful Hopeful is offline
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AVN is avascular necrosis. It is caused by the prednisone given to prevent serum sickness and not by the ATG itself.
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  #8  
Old Tue Nov 17, 2009, 11:31 PM
leeslay leeslay is offline
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Well I don't have AVN but I do have iron overload. I am going to start on Exjade in the next 2-3 weeks. Has anyone taken this medication? Also going to the Dr in Denver on the 7th of December to meet with the allergist about the desensitization to the horse ATG. Has anyone done the desensitization? Are there side bad side effects? Any input would be greatly appreciated!!
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Lee-39 years old-AA,PNH and chromosome 12 disorder-1 rabbit ATG treatment and 1 horse ATG treatment. Getting my bone marrow transplant on November 23, 2010!!!! Counts as of 12-27-10 HGB 12.0, WBC 7.8, platelets 80, Neut# 3.9(12-24-10)!!! Just a touch of GVHD but back home!
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  #9  
Old Wed Nov 18, 2009, 10:27 AM
Marlene Marlene is offline
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There are many post on Exjade in the Iron Overload section that you should read through. The experience varies so much by each individual but it's a good idea to know what others have experienced.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #10  
Old Wed Nov 18, 2009, 02:49 PM
Ari Finander Ari Finander is offline
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Just to clarify, the iron overload killed my femoral heads before ATG, so it definitely wasn't the ATG or the prednisone that caused the osteonecrosis (osteonecrosis = AVN = avascular necrosis). It's not uncommon for people with iron overload caused by genetic haemachromatosis to end up with osteonecrosis of the femoral heads. Exjade would've been a blessing ten years ago!
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