Hello everyone! This is my 1st time posting on here, but I'm a frequent reader and I wanted some feedback from members who don't take medication.
I was diagnosed with ITP last year (2017) and doctors said it was caused my an auto-immune disease (Mixed Connective Tissue Disease) and was put on 60mg of prednisone - plus Plaquenil - I'm in CA so I'm not sure if the prescription names are the same. Everything was going well - platelets were increasing and my steroids were being tapered then this past June my platelets dropped all the way to 5 and I had to be hospitalized. I was given IVIG plus a platelet transfusion and then my prednisone was increased to 60mg and I started CellCept.
Well, this past August I caught a nasty infection that turned into sepsis and had to be hospitalized again and of course my platelets dropped, this time to 18. Currently I'm on 30mg of prednisone and Plaquenil - I've been told not take CellCept until my infection clears up (it's a nasty UTI - resistant to a lot of antibiotics) but I'm wondering if all these immuno-suppressor drugs are worth it. I don't get very many symptoms when I'm low - bruising and petechiae but only when I'm below 10.
I just wanted to know if anyone out there doesn't take medication and what your experience is like, for me it feels like my choices are: low platelets or lowered immune system - both of which may cause problems and now I'm wondering if it's worth it to stay on these drugs or just come off them already.
Thank you! I look forward to reading your responses : )