A little bit about me

[thewilson11]

Hi my name is Josh Wilson I'm 28 from Cornwall I was diagnosed over 4 years ago with ITP my platelet count regularly drops below 10 and haven't had a platelet count above 50 for the whole 4 years.

The treatment I receive and seems to work for me is infusions I have it whenever my count is lower than 20.

My consultant still doesn't understand the reason for ITP I have been invited to take part in a study with some doctors from London to build up a file with ITP sufferers has anyone else been invited if so what are you going to do

Many thanks for any replys in advance

From Josh Wilson

[AnthonyHeard Administrator ITP Support Association]

Josh if you email ITP Support Association HQ on [e-mail] they may be able to tell you a bit more about the study or at least find out a bit more.

[Sachmo16]

I have just become part of a study running in London -I am currently on a trial drug. I just have to give blood a couple of times a year and it's to do with DNA and if there is a link.

Are you just getting transfusions - IVIG? Have they not offered any other treatment as IVIG is only a temporary fix, I was given them while they were trying other drugs which did not work until I started on the trial and my platelets are finally stable.

[thewilson11 in reply to Sachmo16]

Hi thank you very much for your reply it's really interesting to know that there are people out there already taking put.

Could you please tell me the name of the drug??? as I have been told of a few by my consultant at the hospital but that they are only being tested at the moment and not available to everyone.

I have also been told that even if they do fine me a drug that stabilises my platelets it my have big complications later on in life because I am so young and they can't guarantee what are the side effects could be 30 40 years on.

So for the time being I will just carry on with my infusions if and when needed which gets annoying with working two jobs ( A school cook by day and a pasty maker by night lol)

Luckily though they are pretty good at the hospital getting me fitted in at such short notice.

All the best Josh Wilson

[scaryteacher in reply to thewilson11]

Josh, which hospital do you go to? Derriford is a centre of excellence for ITP....I don't know about Treliske though.

I've had ITP since 95 (when I was 29), and taught full time secondary in Cornwall for 5 years with a count of between 60-80. I have no meds at all, as I bruise a bit when my count is low, but I don't bleed. I've had day case surgery to remove a large lipoma from my shoulder/base of my neck without having meds to boost my count, even though my count has dropped over the years.

I hope you are producing cheesy chips for the hard working teachers at least once a week, and that there are the odd cheese and onion oggies in your pasty recipes!!!!

[Sachmo16]

I am on a trial drug called fostamatinib but there a many different treatments out there that can work, I tried a few but they did not work which is why I chose to go on the trial. Most drugs have side effects but you just need to find one that works for you - I am surprised they are just giving you transfusions and not trying you on anything else like rituximab or MMF, two treatments I tried but did not work.

[Topography52_-]

I was diagnosed in December 2016 my count bobs from 21,the highest 60 currently now at 46 I have weekly bloods and no meds , my itp is still unkown still under investigation sometimes we never have answers keep your chin up and good luck ... I am in the UK.