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Bone Marrow Failure Causes, treatment approaches, terminology, related diseases

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  #1  
Old Thu Jun 2, 2011, 11:17 AM
Lori. K Lori. K is offline
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Bone marrow biopsy

Yesterday I got a bone marrow biopsy done Its been 6 years since my last one and I've had a couple before then when I was a teenager. I don't remember it being painful but yesterday seemed like it hurt A lot, and they drew like 20 vials of blood from me.. testing a bunch of stuff and i should know my results in about a week. If everything looks ok, the doctor wants me to try the horse ATG again since that was the only treatment my bone marrow responded but that was back in Aug of 1999, If that doesn't work he was talking about doing a bone marrow transplant...
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25 yrs old, Diagnosed with Pure Red Cell Aplasia in January 1999 At age 13, Monthly blood transfusions of Red blood cells Every 4 weeks, Takes Exjade 1750 MG. Started Horse ATG 6/20/11; Taking Cyclosporine 200MG twice a Day!
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Old Fri Jun 3, 2011, 02:00 PM
mscrzy1 mscrzy1 is offline
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Dude! Don't I know it! I didn't remember it being so painful either! I was crying... UGH! I guess it's good, though. At least, we have tough bones!
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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Old Sat Jun 4, 2011, 01:14 AM
Lori. K Lori. K is offline
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Yeah.... I guess.. I'm anxious to find out what the doctor says I'm Sick & tired of these blood transfusions!!!!!!

Your last blood transfusion was in 97? thats great... Are your counts staying up?
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25 yrs old, Diagnosed with Pure Red Cell Aplasia in January 1999 At age 13, Monthly blood transfusions of Red blood cells Every 4 weeks, Takes Exjade 1750 MG. Started Horse ATG 6/20/11; Taking Cyclosporine 200MG twice a Day!
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Old Sat Jun 4, 2011, 02:59 AM
mscrzy1 mscrzy1 is offline
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My counts stayed up until this last November. They were never super high, but I was lucky enough to see my hb at 14, white at 4.2, platelets at 250! This last November they all dropped below normal and are dropping slowly. My biopsy isn't showing what's going on yet. One thing I've learned with AA is that impatience gets me nowhere. AA is constantly forcing me to sit around and wait. That's ok...It can make me wait all it wants, but I'm still going to kick its booty.
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil

Last edited by mscrzy1 : Sat Jun 4, 2011 at 03:01 AM. Reason: typo
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Old Wed Jun 8, 2011, 11:24 AM
Lori. K Lori. K is offline
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My bone marrow biopsy came back and the doctor said it looks like I have Aplastic Anemia, My immune system is attacking my t-cells when my bone marrow is trying to produce red blood cells. My Whites & Platlets I'm still producing but there not like what a healthy adult would be producing. Probably because they are being attacked also, The next step is he wants me to try the Horse ATG again and be put on Cyclosporine If I dont respond in 4 months then around November, & December he wants to try something elese. I did try the Horse ATG a long time ago when i was 13. It did work on me for about 2 1/2 months My red blood counts were staying up to were I didnt need a transfusion then after that they dropped & I started getting transfusions again Only because I was young and I didn't take my medication *Cyclosporine* Like i was suppose to but now I'm deffinatly going to be taking my medication because I really want this to work!! lol!
When I was first diagnosed the doctor did put me on Prednisone which is a immune suppresent, That didnt do anything for me except made me hungry all the time and fat!! I hated that medication!
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25 yrs old, Diagnosed with Pure Red Cell Aplasia in January 1999 At age 13, Monthly blood transfusions of Red blood cells Every 4 weeks, Takes Exjade 1750 MG. Started Horse ATG 6/20/11; Taking Cyclosporine 200MG twice a Day!
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Old Wed Jun 8, 2011, 12:12 PM
triumphe64 triumphe64 is offline
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Lori,
A good diagnosis is aways a good first step. It sounds like you are on the right track.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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Old Wed Sep 14, 2011, 06:16 PM
Juli F. Juli F. is offline
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Lori: The next time they do a bone marrow biopsy on you tell them you want to have anasthesia (sp) and they will put you under for it. No pain and great drugs you just go to sleep and wake up later. The first time I had one done it was at my doctor's office under local anasthetic and they went in FOUR times because they couldn't get any marrow....PAIN!!! Once I started to go to Moffitt I found out that you could be put under and that they never cause pain if it can be avoided. The reason they couldn't get any marrow was because I was Stage IVB non-hodgkins lymphoma (Mantle Cell) which is very rare for a woman under 60 (usually in men over 60).

Good luck to you and God Bless.
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