Spleenectomy? anyone recently had it ... - ITP Support Assoc...

ITP Support Association

4,125 members2,101 posts

Spleenectomy? anyone recently had it done?

lindaireland profile image
11 Replies

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

Written by
lindaireland profile image
lindaireland
To view profiles and participate in discussions please or .
11 Replies
Elaineod profile image
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 profile image
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?

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 profile image
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 profile image
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 profile image
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 profile image
grishma

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

NickyD profile image
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 profile image
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 profile image
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 profile image
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,

Not what you're looking for?

You may also like...

Spleenectomy - good results

Hi everyone, I'm Kasra I had my spleen removed just before Christmas and you all supported me. Now,...
Kasra profile image

Spleenectomy

Hi wonder if anyone has had a spleenectomy to treat their ITP and if so has it been successful or...
Lindylou86 profile image

Spleenectomy

Hi everyone, As I said in my last post, I'm planning to have my spleen removed in 2 weeks, I was...
Kasra profile image

Spleenectomy

Has anyone had any luck with spleen removal?
Whitespot profile image

Anyone had the Indium Scan done?

Hi, I was diagnosed over a year ago when my count was at 5. I responded slightly to Prednisolone...
Codie85 profile image

Moderation team

AnthonyHeard profile image
AnthonyHeardAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.