Today I'm taking another vacation day for a dr. visit. I haven't had my Nplate shot in two weeks. I'm starting to feel sluggish, developing Petechia spots, bruising and nose bleeds.
My Dr and I are discussing making an appointment for a spleen scan at St. Barts in London.
September will be my 2 year anniversary with ITP.
Hello, I don't post very often but you are welcome to follow me. Now in my 6th year with ITP and all its associated problems. We all seem to have different reactions and side effects, but undergo the same treatments, I am on Nplate at the moment, an increased dose, that to be honest is making life a little miserable. Try not to worry too much, treatment is not straightforward but the consultants always try their best to help us.
Good to read you are going to have a spleen scan before they even think of removing your spleen. I have had ITP for over 20 years, lived on a steady count of 10 and no meds. You can live a near normal life on a low count, just need to be cautious. Good luck
Im impressed you don't take anything with such a low count. Do your drs say thats ok? Was this your choice? Do you go in for blood counts often? Are you always tired? Sorry for all the questions!!
Hi there. In short for 10 years I was teated with various drugs and the only drug that worked was Ivig. Each year I took the infusion, the time between infusion reduced and eventually I was going into hospital, one day a week. That was when the brains of ITP in the UK & USA decided that if you did not bleed, try a wait and see approach.My haemotologist suggested this, tried it and never looked back. Now I have annual checks only. If you look at the ITP Support Association you will find the recommended treatment of ITP from the experts. Fatigue yes, but I can live with that. Take a power nap when needed.
Now coming up 72. Had heart bypass 2+ years back, had eltrombopag to raise the count then but stopped as soon as the op was over. No problems.
Be positive, keep smiling and take the advice of those who specialise in ITP. There are several centers around the UK, see ITP Forum on the web site linked above. If your not a member, join. It's a great organisation with a convention coming up in 3 weeks (in Wiltshire) with many specialists speaking from the UK and abroad on a variety of subjects concerning ITP and treatment. All details on the web site.
Your story is so inspiring!!! Any updates? My father is in a very similar situation as you. Any advice would be so appreciated.
Nplate experiences please
Nplate didn't has any effect
Take both Nplate and Rituximab at the same time
ITP with counts less than 10, is revolade is dangerous?
