ukadultitpregistry.com

veronica · Joined: 18 Jun 2010 Posts: 7 Location: Greece

Hi everyone!
Well I would like to encourage those who suffer from Itp! I am seventeen and I diagnosed with itp in september 2009. Firstly, I took steroids for one month and a half, but they did nothing to me. Then I had my splene out but I was not cured. So I took romiplostim for one month and a half and I was cured! Thanks God! Now I have about 370.000 platelets! Fortunately I am fine! For all who suffer from itp: Do not be afraid ,just be patient ,calm and try to look on the bright side! Do not lose your courage! I lost mine when I was taking romiplostim but I was wrong! I was cured and I love my life! There is still a hope that you overcome itp!!! I was wondering if there is someone in this forum who has taken romiplostim or is taking it now? I am open to questions about romiplostim ! When I had itp and I was taking romiplostim I couldn't find anyone in the internet to tell me his own experience with romiplostim and give me courage!

Ann · Joined: 11 Sep 2007 Posts: 244 Location: London

Hi Veronica,
What do you mean by cured? Do you mean that you no longer use romiplostim at all? So you are in remission? What was your platelet count when you started using romiplostim?

I am using romiplostim also but it isn't generally available in the UK so I'm on a trial. It is working well for me. I've been using it for 10 months now and my last count 3 weeks ago was 131.

veronica · Joined: 18 Jun 2010 Posts: 7 Location: Greece

Hi Ann,
When I started taking romiplostim I had 8000 platelets. I took the first dose and after three whole weeks my platelets were up to 40.000 and two days after they were 600.000! The other week their number fell to 20.000. I took immediately the other dose. I was taking one dose per week and the result was:for one week my platelets were at normal levels and the other my platelet counts were low so I was taking the next dose. I took seven doses and after that I never needed to take another dose because my platelets were at normal levels, they never fell until today. I do not take romiplostim any more, nor other medicine. I took romiplostim for one month and a half after splenectomy. Yesterday I had my monthly blood test and I had 370.0000 platelets. Obviously if you are still taking romiplostim means that you are doing well and have possibilities to overcome itp and be totally cured such as me! It might take time but do not give up! I would like to inform you that the period of taking romiplostim until you are cured is different for each person. So I was cured after taking it for one month and a half. Other people may need more time. I am also seventeen and young people, teens and children are usually cured sooner than adults( my doctor told me that). Finally you have to know that people who haven't got splene have more chances to be cured with romiplostim than those who have splene, according to medical studies( I 've read it to a web about romiplostim) ! Wish you good luck! Hope you are cured soon! Have faith and everything is gonna be ok! Sorry if I have some mistakes with my English since I am from Greece!