hi all I haven’t often posted about my own situation but am now looking for some insights and possible directions. Background is Post ET MF stage 2 diagnosed originally in 2002. CALR2 TET2
I recently returned from a 7 month trip through various countries which was exceptional. Whilst away and even prior my white cell count started rising. I was put back on HU X 1 Tab 3 per week and ( Pegasys 45mcg per fortnightly. I stopped using HU whilst away ( had serious side effects in prior use) due to numbness and tingling in lower legs.
I have watched my WCC rising to 4 times above upper limit and RCC dropping to give me anaemia platelets which had hovered around 5-600 for years is now dropping though just recently slightly above normal.
the main issue now is severe fatigue and breathlessness, lost half my hair, and chronic and constant cough slight expectorant but no purulence. Also eyes having great difficulty both vision and dry. My Heamatologist says not sure why whites so high so I am having another BMB in a few weeks times. The main thing that concerns me is the possible development of an auto immune disorder from ongoing usage of Pegasys. I am being transitioned to Oojara very soon but am not sure if this is the right path now with Any input or your own experiences would be most appreciated right now.
TIA