Suffering ITP for 17 years. Any Tips please

I have a brother who is suffering from ITP since 17 years. Now he is 18 years old. Till now his condition has not improved. He has developed secondary complications like joint pains and swelling, blood boils, destruction of sweat glands and complete loss of ability to sweat. His body is not able to maintain body temperature and heats builds up rapidly which has to cooled by pouring water or being AC all the time. PLEASE HELP by giving some suggestions. We have tried almost all kinds of treatments and almost in the state of giving up. He was administered steroids for about 10 years.

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  • urgently change a doctor to an ITP specialist. ITP Support used to have a list of consultants though I can't find it anymore, email them and find the one closest to you. Steroids for 10 years - this sounds ridiculous, it's considered to be a very temporary solution by ITP specialists, winning time to find another - modern - treatment.

  • I dont know where to find an ITP specialist in India.

  • UK specialists may have contacts in India, worth checking wtih ITP Support Association!

  • thank you

  • U should go to your hematologist there is no ITP specialist.

  • Ignore tpbabu1994. This is a rediculous comment and is not called for or helpful to anyone.

    Where does your brother live?

    IC12345 has the only correct advice. Contact the itp Suport Group and they will provide a list of consultants here in the UK and I am susre through their connections, in certain locations in Europe and the USA who will be able to offer advice.

    Like many, I have lived with itp for 20 years but am very fortunate that I do not bleed (except with trauma). I have a regular count of around 10 and take no medication unless necassary for trauma or procedures. I live a normal working life even at 67 and travel regularly by road, rail and air.

    Keep us all upto to date with developments

  • thank you for the advice. We live in India and have contacted many doctors. None of them could provide proper help. They only force us to go for splenectomy. My brother has the bleeding problems, especially from nose. There were about 4-5 episodes of vomoting blood continuously till platelets were given intravenously. His main concern is that he is not able to lead a normal life like others. He becomes sick very offen and most of time, he is under medications.

  • Hello Pravana, I am so sorry to hear that your brother has been having such an awful experience with ITP. Like Sailor suggests the best hing I can suggest to you is to have a good look at the ITP Support Association website itpsupport.org.uk which has a great deal of useful information about ITP. Another good source of information is the American website pdsa.org

    I would also suggest you email the ITP Support Association on info@itpsupport.org and they may be able to suggest specialists that you can refer to . I am sorry but i do not have information about specialists in India but they might be able to make a suggestion.

    I have had steroid treatment like your brother and they worked for me to some degree but as soon as I was taken off the steroid my ITP would return. They also have some nasty side effects as well of course. I had a treatment called Rituximab in August 2010 which seems to have worked for me so that might be something you could ask about.

    Having the spleen removed does not work in many cases. In some people if platelets are NOT destroyed in the spleen then having the spleen removed will NOT improve the platelet count. Before having the spleen removed it is important to have a test to check whether or not the spleen is the place where platelets are being destroyed. In some people platelets are destroyed by the liver.

    In addition it would probably be useful to have a bone marrow biopsy as this will indicate if platelets are actually being produced properly.

    As you can see there is quite a lot involved with ITP.

    Anyway, I hope this helps a bit but do keep in touch.

  • Thanks you so much for the help

  • Hi pranava17, I agree with both Sailor and Anthony. I have had lots of treatments including steroids. I have had my spleen removed but that did not make any difference to my ITP. I have not had the bleeding episodes that your brother has had so my heart goes out to him. It is hard for the person with ITP but it is also very hard for everyone else who has to care for that person. There is no sure fire cure. We all know that. I am on a drug called Romiplostim and am hoping that this will work for me. Contact the ITP support groups. They may be able to help. Just remember your brother is not alone. We are here to help and support in any way we can. Keep us posted with developments and give my best wishes to your brother. NickyD

  • Thanks you the help and support. Its gives us so much confidence.

  • HI, My sister in-law also suffering with ITP past 1 year. She also using steroids from 1year.

    So, Pls suggest a doctor in India.

  • There is no doctor for ITP in india. My brother used to get treated in Child Trust Hospital in Chennai (Kids Clinic)

  • You can contact a hematologist in India in one of reputed hospitals. One suggestion could be P. ANoop who is a pediatric hematologist at Apollo Hospital, Bannerghata Rd, Bangalore. Other is Dr Ashish Dixit in Manipal hospital, Bangalore.

    P. Anoop has written several informative articles on ITP in reputed journals. His contact info is as follows:

    apollohospitalsbangalore.co...

    Good luck and god bless

  • Hi Pranava, How is your bro. now.....

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