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Can't decide whether this is good or bad

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12 years 10 months ago #29650 by alisonp
Can't decide whether this is good or bad was created by alisonp
Dougie is booked in for four weeks of rituximab starting 9th January. The doctor was VERY disapproving of his activity level at his last visit (ie. too much) and Dougie himself has had enough. So he is going to try rituximab on the basis that he needs to have tried that first before the NHS will fund any of the TPO drugs for him. I am totally in two or even several minds about it, but I think at 14 Dougie needs to be the primary decision maker. I will let you know how it goes - better work or I will have been through all this angst for nothing! :P

Ali
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12 years 10 months ago #29661 by Brandi
Replied by Brandi on topic Can't decide whether this is good or bad
Good luck!
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
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12 years 9 months ago #29703 by tacmom
Replied by tacmom on topic Can't decide whether this is good or bad
Hi Ali...glad to see you on here! I could not log in for the longest time! For some reason, it wouldn't accept my usual login name & pw and I did not want to take the time to change it. Just tried again & it worked! :)

Sorry to hear Dougie is still struggling with low counts! I see he is still as active as ever! I truly hope Ritixan will work for him so you don't have to worry about the TPO drugs. But, if it comes to that...it is comforting to hear that the results of the long-term study on children still has positive results and no harmful effects!
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...
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12 years 9 months ago - 12 years 9 months ago #29799 by alisonp
Replied by alisonp on topic Can't decide whether this is good or bad
I had a problem like that about 6 months ago - the site just wouldn't let me sign in.

I hope the rituximab works too. I'd hate to think of giving him that stuff and it not working - partly because of what happened when Caitlin took it! But your're right, its good to see the results of long term use of TPOs aren't harmful, and for me its quite reassuring that the consultant thinks he could get the NHS to pay for Eltrombopag - because until recently that just wasn't a possibility. :)
Moderators: jaycharness
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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