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  #1  
Old Fri Dec 14, 2018, 04:34 AM
Tanusree Tanusree is offline
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Post AA management, anyone?

Hello everyone,

Although I’ve logged in with my wife’s name - Tanusree, I’m her huband Arka.
She was diagnosed with SAA (severe aplastic anaemia) in 2010, received ATG + Cyclosporin treatment in Jan 2011. She was out of blood transfusions by June 2011. Cyclosporin continued till 2013, and therafter she was OK, with haemoglobin levels fluctuating between 8 to 9, platelets were constantly in the 100 thousand range. In Apr’18 after a bout of heavy periods, she felt unwell and her tests showed Hb 5.0, Platelets 65k. We contacted our haematologist and after a bevy of tests he found nothing wrong! Things went right after sometime, and we continued with our daily lives.

This month, she has had a long period, and today is the 7th day. He Hb Is again 5.0, however platelets are 90,000.

I want to know from fellow members whether they have received any medicines/ treatment for management of platelet or Hb levels post successful remission? If so, please share.

Also, if someone in the forum has developed any further complications after successful remission and a comparative peace of a few years, please share their experiences.

Many thanks,

Arka / Tanusree
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  #2  
Old Sat Dec 15, 2018, 10:41 AM
Marlene Marlene is offline
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Since our situation is very different from yours, I can only suggest, if you haven't done so already, is discuss the heavy periods with her OB/GYN. Addressing that may have a great impact on HGB levels. Her periods alone can cause anemia as well as iron deficiency.
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Sun Dec 16, 2018, 02:21 AM
Hopeful Hopeful is offline
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I agree with Marlene. She could have something unrelated to AA, like fibroids, that are causing the heavy bleeding and consequently, iron deficiency and anemia.

Definitely consult an ob/gym to get to the bottom of this!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #4  
Old Tue Dec 18, 2018, 02:58 AM
Meri T. Meri T. is offline
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Heavy periods

Dear Arka / Tanusree,
When I was diagnosed in 2016, my periods were VERY heavy. Over two weeks. I thought it was menopause. My hematologist said in blood disorders, the platelets weren't enough to keep the periods discharge normal. After about a year of steroids, my period suddenly stopped, also a norm in blood disorders.

Some of my younger patients took drugs to stop the periods altogether, since the periods were too heavy.

Per your question on any medicines/ treatment for management of platelets,
In the three blood lines, my platelets dropped dramatically so I used to need platelet transfusions every 10 days.

Meri
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Female 53, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin.
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  #5  
Old Tue Dec 18, 2018, 03:49 AM
Tanusree Tanusree is offline
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Thanks for replying

Thank you all for replying!

The Gynaecologist has cleared me, there are no fibroids/cysts present, so it is a case of partial remission. What surprises me though, is that for so many years, post ATG+CSA, my counts have been absolutely normal, apart from the platelets, which never exceeded 100K. All of a sudden they tanked to low levels...

Now my haematologist has advised a course of steroids/eltrombopag after a few tests. Hope it all works out.

Tanusree

Last edited by Tanusree : Tue Dec 18, 2018 at 07:00 AM.
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  #6  
Old Wed Dec 19, 2018, 01:11 AM
Hopeful Hopeful is offline
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How low are your platelets now? Have they tested your clotting factor? What about your B12 level?

If they do think this is a relapse, reintroducing cyclosporine could bring you back into remission. It worked (and is working) for me.

Make sure that they do a bone marrow biopsy to confirm your diagnosis.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #7  
Old Mon Dec 31, 2018, 11:54 PM
Tanusree Tanusree is offline
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Cyclosporine + Stanazolol

Yes, other tests like B12, Direct Coomb’s test, LDH have been done and all are in order. Absolute neutrophil count is 1120, lymphocytes are 32%, ESR is high however.
I have refused to go through a bone marrow biopsy again.

Doctor has prescribed a course of Cyclosporine + Stanazolol (40mg) for 15 days on the presumption that AA is resurfacing. Hope it takes action
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  #8  
Old Wed Jan 2, 2019, 04:13 PM
Hopeful Hopeful is offline
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Hi Tansuree,

You really need that bone marrow biopsy to confirm the diagnosis. They will be able to check your iron stores as well. Perhaps they can do the BMB with sedation?? Some doctors are better than others as well, in my experience

Cyclosporine can take 2-3 months to work. So, keep that it mind if the doctor is suspecting an AA relapse.
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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