My 5 year old has had Itp for the past year, the doctors have just started her on promactra. What is everyone's experience who are or have been on this medication.
5 yr old daughter: My 5 year old has... - ITP Support Assoc...
5 yr old daughter
My thoughts and best wishes are with you and your wee one. Bless you.
Hi Irevera1
First of all I must say how sorry I am that you have had this worry for the past year. It brings so much stress and uncertainty.
On the positive side I can tell you that I've been taking this drug (called Revolade in the UK) since June this year and it has been absolutelly marvellous for me. I had tried many other treatments before it and this is the only one that has worked. Within 2 weeks of starting the drug my platelet count had risen to a very safe level and has stayed there ever since. The dose has been adjusted downwards and I'm still fine. I've had no side effects that I am aware of. You do have to be careful about the foods you eat for 4 hours either side of taking the tablet but with such a young child you might be able to wake her before you go to bed and give it to her then perhaps. I'm sure you'll find a routine that works for you.
I very much hope that your little one has a similar experience.
Hiya irivera, where in the world are you? Is this a steroid treatment? My 7 year old boy has had Itp for approx 1yr and 6mths. It has been a roller coaster ride for us as he is a very active little boy and I am on my own with him. Luckily his school have been very supportive. He has had about 4 treatments of immunoglobulin at various points for bad nose bleeds etc. He once had a 4 day high dose course of steroids which seemed to raise the platlets for a couple of days then they plummeted. I did not like these as he was left with joint pain. Please keep in touch and let me know how your daughter is xx
Hi, goodness me we are in the north east of Scotland uk.. No wonder I haven't heard of these tablets yet. Yes do keep me posted xxx all the best xx