Update

Me7 minutes ago

Hope you're all ok, I haven't been on for a while. Been really struggling with my itp. I was on high dose predisolone which made me feel awful and I didn't respond to it, I was then given ivig to buy me some time. Basically it was all going pearshaped !! Anyway I was started on rituximab treatment and had to continue with the steroids. Anyway all done consultant felt I may need one a week for six weeks. She booked four weeks to start with. Well low and behold, my platelets are at 64 ! So not having anymore ritux. Still on predisolone however starting to reduce the dose slightly. So so pleased, and just to see my family happier and not worrying has to be worth it's weight in gold. Anyway it's been several months since I was at 9 (in hospital due to bleeding) ,but hopefully, I can now start to get better and back on track. I was already disabled due to fibromyalgia (which I managed). Now all I have to do is lose the 28lbs I piled on ! So onwards and upwards to getting better and hopefully remission. Thank you to you lovely people, in the same boat who help me to be positive. Love and speedy recoveries to you all. Xxxxxxx

5 Replies

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  • Hi stay strong I hope your count stays up x

  • Thank you xx

  • Hi Olivia2812 , it is a hard illness to get your head around I struggled at first I now know what my body is saying to me fatigue joint aches headaches I take afternoon naps which I have never done beforehand seems to help I get weekly bloods monitored no meds as of yet had treatment but to no avail nothing worked all said and done we have to keep well and try not to let stress into our life apparently another factor easier said than done I know :( your family love you build on that and the weight you should lose when you start to taper of steroids I found with steroids my face went like a blowfish :) you keep happy positive which it seems you have in the bag and keep posting it helps when others know how we feel HAPPY SUNDAY : )))

  • Thank you for your lovely reply, have a peaceful and relaxing evening xx

  • Olivia2812, you are very welcome and as a famous advert says its good to talk another thing of itp I forget more easily we have to laugh : )

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