Is removal of spleen a correct option for curing of ITP

[tpbabu1994]

I am suffering from ITP for the last 18 yrs. i have undergone all the medicines. Finally doctors suggested to remove spleen. shall i go for it or is there any other treatment (even in any other country)

[andrea_41]

i had mine removed after 10 yrs with itp all treatments failed , had key hole surgery, feel so much better now still got to wait for till feb next year to see if it worked but so far so good , i would recommend it , take penicillin twice aday alhad all pre op jabs before hand ,i dont regret it , hope this helps

[4ladylove in reply to andrea_41]

Would mind explaining key hole surgery please?

[NickyD]

Hi tpbabu 1994. I had a splenectomy last year in March - it did not cure my ITP. I did not realise that there were other medications I could have had prior to the splenectomy so I wish I had had them first. However, I do have more energy post splenectomy and am not having to lie down and rest all the time. It depends where you look for statistics - some say there is a 50% chance of a splenectomy succeeding. Others say there is a 70% chance or success. Have you heard of the indium labelling test? It is a test where they take some of your platelets out of your blood, label them and put them back in. They then do a scan of your body to see if the platelets are being destroyed by the spleen or the liver. Obviously if they are being destroyed by the liver - you keep your spleen. I take penicillin twice a day. It is a bind because you have to take it two hours after food and one hour before - when on steroids it is hard to find a three hour window in my day when I am not eating! If you do eat and then take the penicillin before you should, it affects the absorbency of the drug. Hope that helps. NickyD

[lc12345 in reply to NickyD]

Hi NickyD, I live without spleen for 10 years and don't take antibiotics daily. I always have them with me and take only if I feel fever. I was told by quite a few doctors that it's ok to live like that without spleen.

[NickyD in reply to lc12345]

Hi Where do you live? Doctors say different things. Do you find you get more infections than you did before having the splenectomy? I have been taking penicillin twice a day for over a year and it has become part of my daily routine. It is interesting what you believe you need. NickyD

[lc12345 in reply to NickyD]

I live in London at the moment. I always caught infections easily, before and after splenectemy, probably because I have in general weak immune system and am difficient in one of globulines.

[NickyD in reply to lc12345]

American doctors advocate not to take penicillin after splenectomy and give their patients the tablets to take as soon as they feel they are going down with an illness, cold or flu.

Did you feel any difference at all after having your spleen out?

[lc12345 in reply to NickyD]

Not at all, didn't speak with American doctors either but all my London doctors were not advocating antibiotics

[wjoyful in reply to lc12345]

My friend had her spleen removed and she went into remission. She only gets a phneumonia shot every five years and lives a full life. So I guess different places do different things.

[mags4743]

I am told by a very reliable ITP specialist that you should have the indium labelled platelet test as Nicky mentions before having your spleen removed and this will show if platelets are destroyed in your spleen. If they are not you have lost your spleen for no reason and will have to take antibiotics for the rest of your life.

A big decision to make and I wish you well.

Mags

[Rachaely]

I totally agree about the indium labelling scan - my doctors keep talking about a splenectomy for me (am currently struggling through an attempt to take azathioprine at a dose that might increase platelets - but had a very bad reaction last week when went from 50mg to 100mg per day). I am absolutely insisting on an indium scan - I'm allergic to pencillin and a lot of other things, and since my spleen is functioning correctly, I only want to lose it if that's where the platelet destruction is happening. It can be a very successful treatment, but if we can increase the odds of success by knowing if it's the guilty party, then that gets my vote ... currently waiting for Glasgow NHS to agree things with St Barts in London, but I'll need more platelets first I think (been in single figures for 3 months now, apart from a brief spike after IVIg).

[NickyD]

Hi When I had my splenectomy I had a platelet count of 30. To combat the low count they gave me simultaneous platelet transfusions so your count is irrelevant on the day. They did not tell me this until after the operation and could have saved me an my husband many hours of stress and worry. I did not have the indium scan done before my operation. If I had I would not have had the operation - it is upsetting to find out these things when your organ has been removed! NickyD

[lc12345]

Definitely do the test, when I had my spleen removed 10 years ago no such tests were available! And splenectomy didn't help in my case. Though I did have many years ITP-free, so who knows, maybe now my liver learnt how to destroy platelets.

[Hidden]

I did the indium test three years ago and it said that it's my liver doing the killing off of platelets. I wasn't going to agree to a splenectomy anyway but the result stopped my haematologist from suggesting it again. Since then I've moved to a different area and my current haematologist doesn't do splenectomies unless the patient really wants it themselves.

[4ladylove in reply to Hidden]

Can u tell me what they suggested since it was your liver??

[Doris61]

removal of the spleen is not a guarantee! Also, some doctors don't recommend it at all because it is a filture for other issues.