Has anyone had a splenectomy and it has not helped ITP? does anyone know any statistics (success rate etc)?

My Husband has had ITP for around 1.5yrs and during this period he has had tried lots of treatments to which none have worked. He has been on Romiplostim for around 10mths and his counts have yo-yo'd however this is due to getting a higher amount of the drug and then the body getting used to this, then his counts go down. Right now he is on 4viles of the drug which is more than the maximum he is supposed to get as the doctor is questioning if there is any other drug to try. He has referred him for a splenectomy and we are a little nervous.

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  • hi , i have chronic i.tp also ,but have had it 10 years now, i had a splenectomy on the 13th feb this year via key hole, was in hospital 24 hrs ,have had slight relapse 2 weeks ago due to a bad chest infection, was put on a strong dose of penecilon help with infection ,platelets rose by themselves still wont know for about 1 yr wether operation worked ,but myself have never felt better , hope this helps , kind regards andrea

  • Hi

    I had a splenectomy on March 20th last year. My platelets went up initially and then after 5 weeks they crashed, so the splenectomy did not work for me. I am now having to take penicillin twice a day for the rest of my life. However, although it did not help my ITP, I do not suffer as much from fatigue, so it has helped in that respect.

    I too am on Romiplostim and my count yo yo's. I dont understand what you mean by 4 viles of the drug. How many micrograms per kilo is that? I had treatment on Thursday this week and we are keeping our fingers crossed that my platelets don't crash and I have to go back to A&E. So far so good.

    Nicky

  • Hi Nicky - Hope you don't mind my asking but did you have a test to find out if it was your spleen killing off your platelets before you had splenectomy?

    Mags

  • I forgot to say that I was told there is a 50% success rate for the splenectomy.

    Nicky

  • hi folks - thanks for your responses. Nicky - we have read your profile and it feels you have had a terrible time of it. we are lucky in that my husband (so far) has not had any sub issues, just low counts. my husband is currently on 10 micrograms per kilo however his body weight maximum - he should only be getting 8microgams. we are doing this i guess as a last 'fingers crossed attempt' before the op. we are nervous about this because ITP is so different for everyone, you cant really do any comparisons but at the same time you are looking for answers. the frustration is the unkown.

  • In the last two weeks my count has gone up to 1400 and down to 92. You are so right when you say it is the unknown. Just keep on going.

    Nicky

  • Hi clh02. As with all treatments for ITP, what works for one will not work for the next. It is very much trial and see. I have had ITP for 20 years, have a count around 10, take not medication unless required to boost count above 50 for surgery but I am fortunate that I do not bleed except bruises. If you are unsure what should happen next consider a second opinion from an ITP expert or attend the ITP conference in York next month and meet many experts from the UK and the USA, and also meet others with the condition. Spleenectomy to me was not an option I would take, but that was a personal choice.

    Sailor.

  • I'm afraid I can't answer your question except to agree with Nicky - I believe there is only a 50% success rate.

    What really puzzles me is if our platelets are destroyed by our immune system (spleen) and one has the spleen removed. Why doesn't this work for everyone??? Mags

  • Hi Mags

    The liver can destroy platelets too.

    Nicky

  • Nicky - Thanks for that. I left a question for you earlier to ask if, before you had your spleedn removed, you had a test to establish if your spleen was the culprit destroying your platelets. Mags

  • I did not have a test to see if it was my spleen destroying my platelets. I was told that by taking the spleen out they would know if it was the culprit or not. The other organ is the liver that can destroy platelets and that cant be taken out so by having a splenectomy I was eliminating one possible cause. Back to trial and error I am afraid.

    Nicky

  • The spleen is not the only area where platelets can be destroyed - obviously- otherwise it would work in every case of spenectomy.There are tests available to determine the likelyhood of the spleen being the culprit but these are only available in limited hospitals. The support group can provide further information but not all specialists agree that it is worth while. Sailor.

  • I had splenoctomy 10 years ago, then relapsed 10 months later and had prednisolone treatment. And 9 years of remission. Just relapsed recently again and am on prednisolone now. So - it did help, partially, in 9 years a few more new treatments appeared. But it doesn't seem to ever go away completely - though, who knows. Researchers say that success rate is 50%.

  • my consultant is considering a spleenectomy for me and is referring me to Dr Provan for a spleen scan in london which will show where platelets are being destroyed and hopefully show whethere a removing the spleen will work

  • I had the test and mine were found to be destoyed in the spleen, I had a splenectomy and unfortunatly it did not work for me. I was also told by consultant that the liver can also take over the job of the spleen(destroying the platelet) as can any remaining tissue that may of been left behind. I too am taking medication for life but it was worth the risk, if it meant that I might possibly(50% chance) be able to beat I.T.P. Regards to all . Jacqueline

  • u had indium labelled platelet test, my mother has been suffering from ITP from 5 years, and doctors suggested spelectomy without any test, may i now how the test is done and can you attch the reports if available with you

  • Apparently ITP can be embedded in the bone marrow so I was told and if that is the case it will always be with you, even if you remove the spleen. Whether this is true as the consultant moved onto another hospital and been told different things since. My splenectomy worked in reducing the severe effects and I didn't relapse till I was 25, I had mine when I was 3. It took a while for the platelets to recover and a dose of steroids before the doctors found that the levels started to rise on their own. I had regular check ups till I was 15, then discharged. It came back 10 years later after a double vaccination for pneaumonia and meningitis.

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