Hi guys,
I feel like I'm at the end of my tether with the Doctors I see.
Diagnosed sept 2006
Steroids may-dec 2007 - didn't work, got all bad side effects and put on 4 stone in weight
Rituximab nov 2007 - remission for 2 years
win rho june 2009 - didn't work
rituximab august 2009 - remission for 2 years
ivig june 2011 - bad reaction
For the last year my count has been between 4-26 and the doctors refuse to treat me with rituximab again due to the minute possibility of PML and that it can harm your immune system
(Rarely, a serious (sometimes fatal) brain infection (Progressive Multifocal Leukoencephalopathy-PML) has occurred in people taking this medication)
They still want to take my spleen out - but seem to be unaware that this would harm my immune system more than anything I get given!!
They have said that I would be an ideal candidate for eltrombopag however I would have needed to have either had my spleen out and then my count to have dropped again or have the indium screening and be unsuitable for splenectomy.
One Doctor told me that the likelyhood of my platelets being destroyed ONLY in my spleen after me having had ITP for 6 years and my age was extremely unlikely.
I have a job where I drive all around Scotland mon-fri and do not have the time to take off to have the week long indium tests or the finances to go and stay in either London or Manchester.
They have now referred me to the other hospital in Edinburgh, where they have told me that although its a second opinion, I will be told exactly the same.
I am so frustrated and feel like there must be more to life than this.
Has anyone had rtiuximab a 3rd time or had eltrombopag prescribed without having had a splenectomy etc?
Please help, its getting me so down now
Thanks Corran x
Topic Author