eltrombopag

[salmagal]

Hi all just want to update on eltrombopag sadly looks as if its stopped working counts of 6 on 28th june have to go back to clinic on Monday so so disappointing but will have to see whats next

[teddyeddy]

Hi, so sad To hear your news, wish you all the very best on the next stage of your journey. Keep in touch and good luck.

[salmagal]

Thanks teddyeddy for kind wishes i am grateful and will keep in touch

[catherineb]

sorry to hear this salmagal, my little boy started using eltrombopag on the 1st june, unfortunately at this time we have had no positive results, his count still sits at 3, dissappointing as we too dont know where we are going next, we are really running out of options!!!!! hope things start to improve for you its truely not a easy road!!!!

[salmagal]

Hi catherineb thanks for good wishes i hope something works soon for your wee one it must be so hard for you both at 3 he will be just starting to run around im a 60yr old so can slow down as i dont work now i have to take eltrombo till 12th jul but taking it at 4am in the morning to see if it makes a difference this is so none of my other meds can interact as with count at 6 consultant not sure why there's a drop then they will try next trick i just hope your little boy grows out of it soon

[AnthonyHeard Administrator ITP Support Association]

Hello salmagal and catherineb, just wondered if you had tried Rituximab (UK) /Rituxan (USA) ?

I had Rituximab in August 2010 and have been in remission ever since , thank goodness. Just wondered if it had been suggested/discussed as an option for your children?

The following link is an interesting piece about Rituximab....hematology.org/News/2012/83...

[4ladylove in reply to AnthonyHeard]

Anthony do u know if this will work if the spleen has been removed?

[salmagal]

thanks anthony will try this link

[Hidden]

The children's doctor at the recent conference said she wouldn't use rituximab for children because their immune system is not yet mature and it could cause damage. I don't remember what ages of children she was talking about but I'd check that out carefully before using it if I were you.

[AnthonyHeard Administrator ITP Support Association in reply to Hidden]

Thanks for your comments CamdenGirl, I appreciate that Rituximab may not be appropriate for younger children but I suggested it as a general option without knowing the ages of the people involved. I have also been advised that Rituximab would probably not be appropriate for treating young children but I suppose all cases are different and as ever with ITP it is a matter of discussing all options in full with your specialist. It is so frustrating that as usual with ITP there are no definites apart from the fact that NOTHING IS DEFINITE !

[salmagal]

im okay as im 60years old so dont know if theres a prob with this but will surely ask consultant about rituximab is it taken in tablet form thanks salmagal

[AnthonyHeard Administrator ITP Support Association in reply to salmagal]

Hello salmagal, Rituximab is taken via IV line. It is given in four separate doses and each dose can take anything upto 8 hours because the specialist is keen to monitor very carefully any adverse reaction you may have to it. In my case my first dosage took about 7 hours because an hour into the transfusion I got a very sore throat and they stopped the transfusion for an hour to make sure I got no further reaction . The transfusion was restarted and given quite slowly but I did not get any further adverse reaction. Each subsequent transfusion is given with a gap of one week after the previous one. In my case the second, third and fourth transfusions were gradually quicker as I had no adverse response to the treatment. My platelets responded very quickly, going up from 35 to 119 within a week of the first dose and they have remained over 100 ever since. Last platelet count was 164 at end of April. Obviously Rituximab has worked for me and I have had no medication since my Rituximab treatment in August 2010. As usual with ITP, we are all different and all respond in different ways to the various treatments on offer. It is all a bit trial and error but anyway I hope this is helpful and good luck. As with all treatments the final advice is to discuss all options in full with your specialist, including the side effects.

One other thing to mention about Rituximab is that it is quite expensive, so this is obviously a factor depending on what part of the world you are located in. Luckily here in England, the NHS covered the cost which I was told would be about £20000 to £25000, albeit I don't know how true that is.

[salmagal]

thanks again Anthony as you say nothing is definite but at least its another option to discuss

[lindylou45]

Hi any information on eltrombopag would be appreciated and if anyone had experienced side effects. My daughter is starting this drug to see if her count will increase and perhaps stabilise. So many drugs havd been tried on her that we are hoping eltrombopag works . Any info would be appreciated . Thanks

[peruvian]

Hi! I started to tke Revolade (eltrombopag) for about 2 weeks. Has anyone else was taking this medicine? Wich are the side effects? When you stopped the treatment your platelets go down?