Spleenectomy? anyone recently had it done?

[lindaireland]

I have Itp for 7 years i have had 2 doses of steroid treatment, caioveg then retuximab which lasted me 4 years, i am due more treatment in few weeks which will be retuximab again, but they want me to consider spleenectomy? has anyone had this done? how did it go? thank you

[Elaineod]

Yip I had it gone nearly 3 yrs ago all is well and my counts have been up in the high 300 since I'm from Ireland r u ?

[lindaireland]

Hi Elaineod yep im from Ireland too, that is fantastic ! did your platelets go up after spleen was removed? or was it gradually?where do you attend?

[Hidden]

My platelets were back down to 4000 after splenectomy. Ask them for an indium scan to see where the platelets are being destroyed. Not %100 but neither is taking out an organ. I had an initial treatment of rituxin then 2 other subsequent maintainence doses 3 years apart and am again 3.5 years in remission..Why are you having more treatment now are your symptoms problematic ? have they talked about it being a lower dose.

[trev1679]

I would recommend the indium scan first. I am in a similar position to you. I haved been tried on: prednisolone, ivig, rituximab, dexamethasone, mmf, n plate and eltrombopag. None of them have worked and my count remains in single figures. My consultant arranged for me to have the indium scan as splenectomy was an option, I had it and it illustrated that my platelet destruction is in my liver so splenectomy would not help me at all. I would have a count in single figures still and no spleen without the scan. Ask you haematologist about it.

[lindaireland]

Thanks for the replies treatment is on the cards in the next few weeks unless my platelets shoot up. they have been nose diving the past year and im am suffering very bad bleeding i am just miserable right now. the retuximab worked last time and the plan was to try it again this time but i was in the hospital monday and they said about the side effects later in life and to look up about splenectomy. I will look into indium scan but not sure if it is offered in Ireland. I really do not want a splenectomy. thanks again for all the info.

[PixieKez]

Hi. I had a full spleenectomy done about 6 years ago - I was one of the few cases where my liver adapted and started filtering my blood for me, which meant I was still killing off my platelets. This happens to very few people and because the liver takes so much longer, my platelets sit between 80 and 100 but never drop more than this. Havent noticed any bad side effects - I take penicillin daily as it helps to fight off infections but otherwise all good.

[grishma]

I also had it but it worked only 4 one year nd again there was relapse

[NickyD]

Hi I had a splenectomy. My count went up for four weeks then it crashed. Splenectomy was a complete waste of time. Have the indium test. If you don't need to have the operation then don't. Nicky

[lisacplnd]

Hello, I went through many years of treatment, infusions, hospital stays, etc.... This past Nov '13, I had my spleen removed.... My counts are stable but I have been sick with common illnesses more and they last longer. Having a cold for 3 weeks stinks but its still better than everything I went through with my ITP... Good Luck!

[amberyard]

I tried everything before have spleen removal 11/25/13, I'm 33 and been at this since 4/12. The highest my counts went was 380k and I'm thinking it was the IVIG's I got before surgery since my counts were 12k. Last count Wednesday 3k and Thursday 2k back on Pred 60mg and re count on Monday. So as you can tell it didn't work for me and I still have weird pains and discomfort from surgery.

[Itpnotforme123]

Yes I had I was in remission for 2 years it took awhile for your body to adjust but it’s coming back listen to your doctor though it can save your life,