ITP Spleen removal

So, I was diagnosed with ITP October 2014. Ever since I have had a single figure platelet count, proving non responsive to pred, IVIG, elmotrobag, romniplostim, rituximab, MMF.

My options now are to have my spleen removed. I have requested an indium scan but been told that I do not have enough platelets to scan so this is not an option. I am really confused about whether to go ahead with the spleen removal or not, as it is unclear as to whether my platelets are being destroyed in my liver or spleen. One top consultant I have seen has said that another option would be to live carefully with a platelet count of 3, however I am 34 with four children under 6, and in limbo with where I stand with my life as an active mummy and career as a police officer. Any thoughts or suggestions? Thank you xx

13 Replies

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  • I was also non-responsive to the treatments that you mentioned other than Romiplostim (NPlate) which thankfully worked for me. I did have some others though which, while they did not work for me, I thought that you might like to know about them.

    These were Cyclosporine (used for organ transplant patients to suppress the immune system) and Dapsone (use to treat Leprosy) - I had neither of these conditions but understand both are also used for the treatment of ITP as was in my case.

    I had read that Cyclosporine can be used in conjunction with Romiplostim (which it was for me) and was having good results which some remissions.

    Do you have any nose bleeds and blood blisters in your mouth at 3? I certainly did and was glad that I was able to get my count back to normal and they disappeared.

    I hope that things turn around for you soon and that you can avoid having your spleen removed.

    Robert

  • Hello, I heard quite bad reviews about removing the spleen , I would say do you researches very good . Read a lot and ask a second opinion (different hospital or doctor ) I am having constant low platlets too, I am taking revolade. It does not help me much either . :(

  • I had my spleen removed and it made no difference to my platelet count. I am now susceptible to infection and would advise against it if at all possible. I take penicillin twice a day to counter the effects. Nicky

  • Hi , have you tried Romoplostin , nplate, .i have the same history as you ,and this is the only thing that has worked. My platelets are up to 206 . I injectect myself every week. But i have to do it in hospital . But hopefully ,one day i will be able to do it at home. Good luck to you

    cissy

  • I have recently had my spleen removed after my Revolade treatment gradually stopped working. No other medicine has had an effect so far on me (except IVIG but that's only temporary) Unfortunately when you are still young you have to weigh up the risk of taking medicine against removing the spleen. All medicine can have side effects and taking it long term is obviously risky. Now I am free of the medicine and my count is fluctuating quite a lot but always a safe number (so far so good). Spleen removal isn't a lifetime fix but if you are lucky it will be many years until a relapse.

    I have to have a flu vaccination once a year and some jabs against pneumococca, and other similar bacterial infections every 5 years or so.

    The surgery was keyhole and I was home the day after. 2 weeks to recover so I could work again.

    I understand how you feel I am very active and have kids, but I did not want to remove my spleen, however in the end I had to accept the risk it might fail and bit the bullet.

    Jason

  • our friends` daughter had her spleen removed and it was disastrous!

    With several weeks in coma, internal bleedings, multiple drugs keeping her alive and long rehabilitation process. She survived but needless to say, spleen removal didn`t do any good for her

  • My daughter was in the same boat as you tries everything and more them what you listed....she is almost 10 years old and had she spleen removed almost 3 years ago on July 9th. She has been doing amazing !!! No IVIG no treatments our Dr's appointments are now 6 mths apart. She can come out of remission with a viral infection but we keep an eye on her make sure she does not get a fever and she is good :) perfectly healthy little girl :)

  • Well to counteract that scare story my father had his spleen removed in the 1940s, had no medication after and lived another 35 years with no illnesses and conceived me, all before Itp was recognised.

  • After 4 years on WinRho, had my spleen removed and had remission for 8 years. I had a normal life, was not sick more often than before. A nasty virus 5 years ago started me back on various treatments which either didn't work or were short term with bad side effects. Now I'm on Nplate every week and it keeps me safe and pretty even, around 50 if I don't get sick. Best of luck to you!

  • How much count need for teeth withdrawal?

  • Over 50,000

  • Thank you all for your replies, it's really interesting to see how different we all are. My consultant is referring me for surgery now, think we are taking the plunge as all else has failed. I am no where near safe at a constant count of 3 so have nothing to lose. I will keep you all updated. Thank you again xx

  • Hi Katewag, I was in a Similar state, but i did respond to prednisone and my platelet counts came to 70 ~ 100K. But its only with Natural Indian Medicine (Ayurveda), my counts came back normal (241K on my most recent test).

    I personally didnt not have any side effects while consuming the Natural medicine other than heat boils and few Acnes on my face.

    If i were in your position, would definitely try out all other options before Spleen removal. I live and work in Seattle USA and can give you more details about the medicine, please write to sripsg@gmail.com

    Standard Online Disclaimer :-) I am not a doctor and my views/comments posted above are from my personal Experience.

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