Our 13 year old daughter is 12 months into her ITP journey. No success with steroids or chemo although Eltrombopag has really suited her and has catapulted and sustained a count in the 200's which is nothing short of incredible.
Lots of "normal things" were put on hold over the last year. Would it be ok for her to have her ears pierced now?
She has missed out on so much over the last year (lost friends who didn't understand, had to say no to invitations etc when she just felt too exhausted ) and we just want things to start to seem like it does for every other teenager.
Many thanks as ever for your support and views.
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Bellazac1971
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Hi- Yes, it's a treatment in the form of rituximab, designed to weaken your immune system in the hope that the platelets can start to increase again. Chemotherapy has many more uses than the one that typically springs to mind when we think about it.
I am back in hospital tomorrow, my count the last day had dropped from 83.000, to 75.000 while on steroid taper. I think the steroids I was on, also weakens Immune system.
My dose started 1st of June 100MG for two weeks, falling by 10 MG every three days, until 40, then it fell by 5 MG every three days until it stopped on August 2nd.
My Platelets went up to 88.000 from 23.000 after one week, then fell most weeks from there on.
Tomorrow will be interesting as I am off them one week.
I am feeling very tired everyday.
Head pain the last week as well, mostly on left side of head or across the top, then sometimes at back of head.
They mentioned if my levels dip again, the will put me on full dose of steroids again with slower taper next time.
I had heard of the drug you mentioned, but didn't realise it's other use.
We were given a wad of printed information sheets when our daughter was having the first rituximab treatment. It was all a bit surreal as they were sheets produced by Macmillan and the header across the top of the sheets was massive and that's all I could see. You could see other parents looking and wondering what condition our daughter had.
Eltrombopag is working well at present but NICE guidelines mean it can only be given after a number of previous failed treatments.
Fatigue is dreadful for our daughter and she is usually a very strange shade of white/ grey until mid morning. Just trying to get her as much rest as possible during the school hols.
As a family we are glad she's off the steroids as the side effects were not kind to her and the impact will be life long unfortunately.....
That sounds like a good question for the doctor. Besides whatever risk of bleeding might be involved, it would be a good idea to know whether your daughter is at any risk of infection from a possibly weakened immune system. If the doctor thinks it's safe, take her and get her some beautiful earrings to celebrate.
Hi, I'm so happy for you that Eltrombopag has worked for your Daughter that's great news and at such a high level. I have tried everything, nothing seems to like me, I am of to get my spleen scanned tomorrow.
I know one thing though if my platelets stayed that high I would be doing all the things that I was before. I have played football for the last 17 years and have had to stop that, which I hate not being a part of, so I know how it feel's.
I would say just go for it, I'm not a doctor, but I know that if my platelets stayed up that high I would get a tattoo, much to all my family telling me not too but that wont happen as nothing keeps my platelets up.
Have you tried a change of diet?? We will find out how my daughters platelets are tomorrow at the doctors, and I'm hoping she is doing better. She has less bruising and more energy. I pretty much changed her diet and the last time I did that they went up 50000
Good morning. Yeah I have tried changing some of my diet, but that hasn't done anything. What things have you put in her diet? I'm glad she isn't bruising and has more energy, fingers crossed for high levels today, I would celebrate with some ear piercings if they are high 😊 I'm having my spleen scanned today.
It was a new experience that's for sure. spent most the day in there, basically they take blood out and take that to the lab, sieve out all the platelets and put radioactive cells with them, pump them back into me allow them to go round my body for an hour, then I went into a tube for 45 minutes. basically this then takes lots of imagines and will see where mostly my platelets are being destroyed. I have to go in the tube 3 times so they can also see the decline of platelets and put if on a graph. I'm back on Friday and Tuesday then in with the consultant on Thursday so will know for sure then
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but that wont happen as nothing keeps my platelets up. 
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