Sharing important information for AA India

[Tanusree]

Hello Everyone,
I was diagnosed with SAA in 2010. I received Horse ATG in Jan’11 and my cyclosporine dosage went on till mid 2013. I don’t have any siblings.
From 2013 till 2018, everything was normal. My Hb levels used to hover around 8.5 to 9.0 which is pretty normal in my place, and platelets used to be below 100K, WBC 3K range. Suddenly in 2018 May, my blood levels started to drop.

All this time I had been regularly seeing my hematologist and he advised a series of tests, including Bone Marrow aspiration. With the past experience of that test, i refused and went through the other tests. None of them indicated any relapse, but levels were falling and Hb went to 5. I had to take transfusions and hematologist started a course of Stanozolol (20mg per day) and cyclosporine (400mg per day). There were some adverse reactions due to which the dosage had to be stopped on and off, and finally from December 2018, I was able to continue the dosage for 3 months. In March 2019, my Hb came 11.3 and platelets above 200K. I was jubilant. Hematologist stopped the medicines immediately.

THAT WAS A BLUNDER!!!

Within September 19, my blood levels started falling again. Hematologist advised dosage of Revolade (eltrombopag) initially with 25mg and then 50mg for 2 weeks each, by which the platelets returned to 272K in machine count, but others were low as usual. Hb is presently hovering at 6 level.

I had a show down with him and told him to stop revolade and restart Menabol (stanozolol) and cyclosporine, which was working for me earlier. That’s because I’m 34 years old, and there are serious side effects which can lead to sudden death in case of long term eltrombopag medication. Moreover, it is hard to continue revolade as it is very costly, and the suggested dosage for AA is 150mg per day.

I want to warn fellow AA sufferers through this post regarding the dangers of medication. Please do not allow your hematologist to stop cyclosporine/ eltrombopag or any other steroids WITHOUT Tapering. If the medicines are not tapered, the counts will magically rise for a short term and then start falling again. Beware! There are a few hematologists who treat pancytopenia or partial relapse patients with prednisolone / stanozolol, and these therapies have been known to sustain patients for years together, although you have to take the medications many times, as the counts would fall within 5 or 8 years.

Be sure of who is treating you. Do not let your Doctor dictate medicines or treatment without proper discussion. Be sure to put forth your concerns. If the Doctor is not friendly change immediately. And Study yourself! My blind faith in my Doctor has cost me immense trauma and prolonged medication.

Best of luck!

[Tanusree]

After my ATG course, although the platelets were in the 100K range, actually they are now a mixture of normal size and large sized platelets. Initially they were not detected in hemogram machines, but new machines like the Sysmex 1000 detect these.

Large platelets are known to be more effective for clotting, but with eltrombopag, the effect on large platelets is to make them conjugated and create giant platelets, which can clog blood capillaries. This can lead to sudden heart attacks or brain haemhorrage in the long term. This is the reason I came away from the eltrombopag treatment.