Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Just wondering how everyone got on with the oral cyclosporin when they got home,nausea etc ?
Days 196 before my Cyclosporine was stopped...... as I had some GvHD.
They are not great to take but I was never sick with them. But felt sick every time I looked at them. I found taking them with some sparkling drink helped get them down as they are big and taste disgusting - sorry
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
My nausea continued for quite a while, I was still loosing weight 9 months after I came home as I was eating so little. However I don't know if I can blame the cyclosporine - I put it down as a ongoing reaction to the chemo drugs.
Daughter had hers in liquid form as she’s not good with tablets (combination of whooping cough when a tiny baby and radiotherapy to mediastinum) and used a strong black currant drink with fizzy water to mix it with but it still tasted disgusting and she can’t now face black currant drink or fizzy water!
hope you manage, it may be you need a way of disguising it as she did, but make sure it’s something you can afford to never have again!
Me too, Tessa.
I ended up being on cyclosporine for 3 years.. firstly for about 100 days then a break of about 12 months and then another 19 months. To be honest I found it much better than the IV version.
Sure the taste wasn't great but it wasn't that bad. To begin with I just asked for lower dose tablets so they were easier to swallow but after a while I just got on with it. I didn't get any nausea with the oral tablets but the IV made me feel rough so I got off the IV asap after the transplant (about 4 days from memory)
I just used to knock them back with what ever I happened to be drinking which ranged from water, fruit juice and even some red wine in the evenings after the first year!
I guess it is like all meds.. some you get on fine with and others you don't. See how it goes and find out what works for you.
Good luck and hopefully you will just be on them for around 100 days and wont need o go back on them!
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