Doctor wants to take the spleen out if my counts gets to 120,000 I've been on nplate for 3months and my count hasn't been higher than 39

[cjoh]

Has taking the spleen out helped anyone. I've had itp since August 2013.

[tinkerbelle77]

Have they not tried rituxamab that worked for me. My levels vary between 45-90 x

[alice_sportyauthor]

I was diagnosed when I was pregnant some 15 years ago. My count is normally between 10 and 20 platelets. They tried various treatments and then they wanted my spleen, with (by then) two small children I declined a dangerous operation, and declined, and declined, eventually it was decided (mainly prompted by me) that I was a 'functioning' patient, ie/ I have a low platelet count but I function okay. So I was discharged into the care of my GP and I wear a Medic Alert bracelet that says I'm a bleeding disorder and I have to report (txt) head injuries to my husband (just banged my head on a cupboard door) just so if I go a bit 'iffy' he knows to get me checked out. But it take five years to reach that point. Hope this helps

[Lynnek]

Hi hun. My platelets are usually between 9 and 22 and I am only monitored by haemotologists. I do not take any medication and monitor my self. I always have bruises but if I think they are worse than usual, I arrange a blood test. I must admit, I prefer to monitor myself as I know me better than anyone. I wear a MedAlert bracelet and get checked out if I have severe headaches or a knock to my head. Everyone is different and ITP affects everyone different - understand your body, learn as much as you can about ITP and you will know what is best for you. Surgery is an option but MUST be the last option. Some people it works for, others it doesn't - in the end, it's your decision. Good luck x

[GWR1947]

It is not a problem having the spleen removed if that is the source of the destruction of the platelets. They should run some more tests before they resort to the knife. Particularly looking for anti bodies. Have you tried Vinchristin and the other drugs. I was running at about 1-4 Platelets before I had Vinc and Romplos. but they are now up at 117. I know it is very worrying but the short answer to your question is there are not to many problems associated with splenectomy but "if it a'int broke don't fix it "

[5052]

I am 61 I had my spleen out in 2004 in England they have a test I think it's called idium test it finds out If the destruction is in the spleen or liver. I did not have this test but they took my spleen out I was in remission for 9 years it came back last year So the usual predislone then Elbombatrang did not work on it for 10 weeks. Then had 4 does or Rebuxtum then put on NPlate it took a few weeks may be 6 for it to kick in the platlets went to 700,000 mad really up and down any I took my last NPlate on December the 3 rd platlets now 435,000

[kered]

Hi Cjoh, Doctors are fixated with platelet counts rather than on the symptoms of ITP. In the US they tend to be more ready to use a treatment that is now 100 years old than we are in the UK. At best splenectomy gives a remission in about 66per cent of the cases, but then how long does that remission last. Also removing the spleen will put you at permanent risk of infection.There are now many other treatments available, although they may not work in all cases.

People with chronic ITP may choose not to be treated because of the side effects of the treatment, but the aim in difficult cases is to get a count of 50 to 60,which is safe for most clinical circumstances. The TPO's such as nplate and rhomoplostim (revolade, promacta) is to get such a count and not much higher. The treatment available will depend on what insurance you have in many countries. Some of with ITP would regard these lower counts as "normal" for us and some would be delighted to get such a count. Hope that helps.

[22-patience]

It certainly did not help me. I think there is about a 60 per cent chance of success with that surgery. It does present new problems for your immune system without your spleen. I took the chance hoping mine would be a success story but it didn't happen but wouldn't it have been wonderful if it had worked. Knowing me and knowing what I know about ITP, I'd take the chance again. It would be soooooo wonderful to have a life AFTER ITP!!!! I've had ITP since 2007 and it never gets better------just goes on and on. So frustrating that someone can't find a cure. I'm sure some day that will happen and hope that I'm still alive to enjoy life again!!!!! Good luck with your decision----whatever it ends up being.

[Elaineod]

I've been in remission nearly 3 yrs now since my operation best thing I ever did

[Hidden]

If you arent symptomatic then 39 is pretty good and perfectly fine to live with