Itp. Any cures known

[alfsmum]

My son has had itp since he was 3. We have been thru numerous blood tests. Bone marrow tests and iv immunogloblin. Does any one know of any other treatment that could be used as his consultant is seriously lagin in the treatment side. His pltelets are rarely over 5 and has jumerous bleeds and bruises. Please help am at the end if my tether

[AnthonyHeard Administrator ITP Support Association]

Hello alfsmum, sorry to hear that your son has had such a terrible time with ITP. I was diagnosed at the ripe old age of 46 in July 2006 with a platelet count of 4. That was a major shock for me so I can only but imagine how difficult it is for any parent coming to terms with ITP in one of their children

Firstly I would reccommend the ITP Support Association website at itpsupport.org.uk if you have not already had a look at it. The website has plenty of information about ITP including the various treatments.

Another useful source of information is the PDSA website (they are the American equivalent of the ITP Support Association) at pdsa.org.

You may also like to have a look at the following link which is to Dr Drew Provan giving a lecture on the upto date treatments for ITP. Dr Provan is one of the leading experts in ITP and is based at the Royal London & Barts Hospital, he is also one of the medical advisors to the ITP Support Association......fhs.mcmaster.ca/medicine/he...

If you are UK based you might also wish to get a second opinion from one of the ITP specialists listed on the following link. As ITP is quite a rare condition many doctors and specialists are not that familiar with ITP so you are quite right to seek the opinion of an ITP Specialist at ......

ukitpregistry.com/itpforum/.... Unfortunately the UK ITP Specialists cannot comment on non UK based cases.

Sadly there is no cure for ITP, albeit there are numerous treatments which work in different ways and to different degrees of success in different people. Because we all react differently to each treatment it is a matter of trial and error to some degree, albeit much depends on previous medical history, age,severity of bleeding and or bruising and lifestyle. All these things need to be discussed at length with your ITP specialist.

I have been in remission myself since August 2010 when I had Rituximab treatment and that has keept my platelet count over 100 ever since. The last platelet count I had was 164 on April 30th. Before Rituximab I hasd Prednisolone 4 times over the previous 4 years and each time my platelets would go up quickly after going on to the Prednisolone but then fall as soon as I was withdrawn from the drug. I was also tried on Azathiaprine but I reacted very badly to it with violent sickness, dizziness, fever, rashes and I was taken off it after only a week.

Rituximab has worked for me albeit I realise that it might not work forever. There are many treatments available for ITP but I think the most difficult part about it is that no single teatment works for everyone, it is so random and so therefore very worrying and frustrating.

Anyway, I hope all this is of some help but do let us know how you get on.

[NickyD]

HI Alfsmum. I have had a lot more treatments than Anthony. I have been on Prednisolone, IVIg immunoglobulin, Dexamethasone, Rituximab, Romiplostim and had my spleen removed last year. I am still not stable with my count. Two weeks ago I had five blood tests, last week I had two and this week I am scheduled to have two. I back up everything that Anthony says. There are many different treatments to try. I am hoping to go on another drug called eltrombopag and if I cant do on that (because the government have not agreed to fund it in England) then there are some other immunosuppressant drugs I can try. Anthony is lucky to have a stable platelet count. You just have to keep on trying until (hopefully) you find one that works for you. There are hospitals that are going to be centres of excellence for ITP - get referred to one of those if your consultant is not helping. I see my consultant every week and get guidance - that does not mean I am stable and my count goes up and down all the time. I have to go in for transfusions when my count is very low. It is a very frustrating condition and there is no sure fire cure. Many children grow out of it. Remember you are not alone and many of us are walking the same path. NickyD