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Old Tue Nov 21, 2017, 11:13 AM
Sarah Roman Sarah Roman is offline
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Join Date: Jul 2016
Posts: 27
Feeling confused!

Its been a while since I posted but was just wondering if anyone can help for anyone that has read a post before I live in Spain but I am English my treatment has been good I do feel that I have been looked after but there is always a but! my consultant seems very rkaxed about most things!

So I had Ratg Sept 2016 along with Ciclosporine and Eltromopag so to cut a long story short I came off Ciclo in January and carried on with Eltromopag things seemed ok none of my 3 bloodlines have never quite reached normal but as I read so many times maybe for me that was my normal. So I have had bloods 3 monthly and April until July my platlets dropped 40 thousand but my other two bloods were not to bad then July until last wk I know have 40 000 the have dropped so from January until niw they have dropped 103 000, I feel worried as all 3 of my bloodlines last Friday had 2 stars beside them they were all below what they should be, so consultant has upped the Eltromobag and I am now taking Ciclosporine again. Please my question is out of a possible 15 tests in the CBC 10 of them had double stars does this mean my marrow is rejecting the medicine. I still believe this is all a dream and I do not believe the results when they come back, I feel like a fraud as I dont look so bad but I have lost my appetite and inside my body sometimes feels like its sleeping and tingling, I do hooe I am making sense to you.

When I try to speak to him he is like "oh dont worry" so not quite sure how to approach this. I go back Dec 15th to see how things are I worry that time is passing and maybe he should be looking a bit deeper into this. I have had 3 biopsies at the beginning should he be doing another?

Feeling lonely and it all feels a little sureal Please help?

Much love to everyone x
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