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Old Sun Mar 25, 2012, 07:33 AM
Gosia.P Gosia.P is offline
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Join Date: Mar 2012
Location: Indianapolis, IN
Posts: 6
AA relapse

This is my first post.
Thank you everyone for sharing Your experiences, reading through your posts helped me understand my frustration.*
This is my 'second time around' .
My story starts in Feb. 2006; initially lots of headaches, fatigue, some bruising. At that time working full time, trying to stay in shape and our Twins being only 4 was quite a bit. Did not think that the reason behind my problems was so BIG. I decided to see my family doc, after bruising my arm. The bruise was strange in color: reddish purple for two weeks- without wisible changes in colors!!!
First CBC showed that all my blood counts way below normal! HB 7.6 W 2.6 and PL 28 and next day I saw my hematologist/ oncologist.*
It took 6 weeks; 3 BMB, countless blood tests, 1 rejected blood transfusion - due to as later was found presence of anti- Jka and anti Fyb antybodies, and my counts to drop to HB 3.5 ; W1.8 ;PL 10 to be hospitalized, and to learn that i have SAA.*
Through the the time of figuring things out I was out and about and working fullI time ! Looking at that time now - how did i do it??? No clue!!
*I was initially given up to 30% chance to make a progress. My bone marrow was at 20%. I was treated with horse *ATG and initial transfusions of platelets and red cells, things were going surprisingly well. Very slowly, yet steadily my counts were climbing!!! I was on Cyclosporine and prednisone initially *and bunch of other preventative drugs. Right after the discharge my PL were 2!!! and WBC >2, *RBC @2.
Had my PICC line for over six months and recived 50> units of red cells. Last transfusion was 11/06!!! I stayed on cyclosporine for about 2 years total, which was tapered down very slowly after over a year course of 150 mg 2x.
Things were going very well. My HB went up to 13.4; W 4.7 and PL up to 181 !!!
My initially weekly docs visits and lab work went down to semiannual.*
First drop in my labs showed in PL in mid 2011, it went down to 135 and then 128 but my HB *in 12 -13 and WBC 4>were still good.*
Until Jan 20, 2012 when my HB went down to 10.4 and PL83, and 3 weeks later another drop *HB to 9.6. , PL 66. It didn't look good *I knew that ' it's back' 😖
BMB confirmed - I relapsed. It had also been found that PNH showed up - @ 2% right now - and screening to be repeated in 6 months ; also most likely due to horse ATG, partial deliton of chromosom 13 was found.*
This time we decided not to wait and go ahead with second ATG.*
*Had my second horse ATG course 2/27/12. I'm on cyclosporin 2x 150 and still on prednisone - yuck!
*This time around about 2 weeks after the treatment I started having a lot of pain in my joints (knees, ankles, wrists, occasionally - elbows), my energy level is very low, walking limited, running out of breath after 100 yards sloooooww walk. Looks like this time I will have no choice, but really take it easy and stay home longer.
*After the first round of ATG, despite low blood count my mobility and energy level was great! I went back to work part time after 5 weeks! Now its an opposite situation, and it frustrates me.
I know pacience is the clue...
Any wisdom or words of advise???
Good luck to all of us 🎈
__________________
Gosia/ 47; SAA 04/2006; 1 round of ATG 2006;in remission until 01/2012. ...PNH @2%, chrom 13 partial del; Second course of ATG 2/27/2012 on cyclosporine, tapering down Prednisone/ neuropathic pain syndrome??? ... Hoping for the best!!!!
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