Just lost my 70 yr mother to AA after a 3 year struggle
My mom was initially diagnosed as ITP/probable MDS in oct'15 due to low platelets after 1st biopsy which was later changed to MDS in July'16 after 2nd biopsy with marrow functioning at 25% & even haemoglobin showing signs of falling with low platelets. Medication was changed to Revolade 50mg.
This went on for about a year post which platelets again fell & she needed her first platelet transfusion. In Nov'17, she required another transfusion of platelets & haemoglobin post which she was also put on erythropoeitin injections in addition to revolade.
In Jan'18-Feb'18, she needed 4 transfusions post which she was also started on filgrastim injections + cyclosporine & lenlidomide in addtion to revolade & erythropoeitin which seemed to help her for a few months till June'18 when it all started to break down.
She needed platelet transfusion every 3-4 days without response & platelet count was below 5.Another biopsy showed marrow had gone Aplastic & she developed blisters in mouth with bleeding, nose bleeds & brain CT showed changes though the neuro said that she would recover if platelets went up.
By the time ATG could be initiated, she had a reaction to the anesthesia at the time of inserting central line & succumbed to anaphyllaxis reaction in Aug'18.
Hoping this information is of use to someone having similar illness as this is rare.
It's generous of you to share your mother's story so that it can provide information to other patients.
I'm very sorry to hear that you lost her to bone marrow failure, especially because ATG might have helped her. Keeping her platelets up was obviously a major treatment challenge.
Do you know why the diagnosis was "probable MDS" at first, and later MDS? How did they decide on the diagnosis?
The first biopsy in Oct2015 showed marrow functioning at 30% with Normocellular cellularity. Even the fish for MDS test was clear; also apart from platelets the other 2 variables haemoglobin and WBCs were Normal but having seen the blood samples the doctor was of the view that it did not seem a typical ITP case in which scenario they would have just removed the spleen...also the line of medicine treatment initially was the same - no treatment for first couple of months till platelets fell to 30..then prednisone for next 6 months...the 2nd biopsy in July’16 changed to 25% marrow functioning with hypocellular cellularity after which the medicine changed to revolade @ 50 mg per day to begin with and then 100mg per day which gave some results and she was alright till April’17.
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