Hi all, I was diagnosed with itp in July last year and wrote a couple of posts at the time. Sorry haven't been in touch for sometime; it was greatly reassuring to talk to other people about their experiences at the time and people were very kind.
It's fair to say it's been a bit of a roller coaster ride. Been on the steroids, immunoglobulins but was resistant to these treatments. Was then put on romiplostim; count bounced around everywhere and I got flu-like symptoms which persisted for a number of months. I was then placed on eltrombopag in September 15. Counts were reaching dizzy heights of 30 which was good for me. Unfortunately, after Christmas stopped responding to this. With a count of 2, they started me on rituximab and I have now had the last of the standard 4 treatments yesterday. Side effects have been awful: chills, fevers, nausea. Count only at 3 yesterday. I'm trying to stay positive but it is so hard. I know that this latest treatment can take a number of weeks to take effect but in the back of my mind is obviously what next if this doesn't work?
I am often covered in bruises and get prolonged very heavy periods. Last week blood all over my pillow from bleeding gums. Looked like I had been chewing on raw meat in the night!
Am just very worried. Was off work for three months last year. Managed to get back and have been in until this latest treatment. I really don't want to be off long-term again but often feel quite unwell. Sorry, hate saying this as know people have it a lot worse and receiving treatment in a chemo ward with lots of very poorly people does put it in perspective. Having said which I don't have much quality of life. Sleep when not at work and go to bed at same time as ten year old daughter.
My dad passed away suddenly a few weeks before Christmas which has been devastating and wonder if the stress of this may have lowered my count?
Sorry if this post is a little long winded but would appreciate any feedback.