ITP SPLENECTOMY vs

[Jesse150]

Hi I live in Western Australia & have had ITP for about 8 yrs. My platelets have gradually been dropping & currently sit around 5 or under (1 this week). I am under a lot of pressure to have my spleen removed from my specialist. In Australia I am unable to access any of the ITP drugs such as Promacta/Eltrombopag etc unless I have had a failed splenectomy. I am now considering splenectomy as I have run out of options & sitting dangerously low. Does anyone have any suggestions?? I have tried Rituximab (didn't work for me) I have read of many of you who are successfully using ITP drugs overseas & wondering how they are being accessed. Desperately trying to hang on to my spleen as long as I can as apart from ITP I have always been very fit & healthy. Sandra

[Dahle2424]

Hi Jesse, I would recommend a 2nd opinion. Once the spleen is removed there is no going back. I refused that option and still have my spleen and live with a count of 3K with no issues. That is my "normal" count. Please read my Posts regarding my open heart surgery back in March 2020.

[Mark_Hudson]

Hi Jesse,

Do you know if it’s a hospital based ‘guideline’ because from what I can see your government subsidies the drug servicesaustralia.gov.au/or...

I can’t find anything about any national guidance on the issue, but what I would say is removing the spleen rarely works as the liver takes over a lot of the destructive duties in regards to platelets but it would reduce your ability to fight infections and leave you on antibiotics for the rest of your life.

An Indium Labelled platelet spleen scan sometimes can help show where the destruction happens, I know with mine they saw it was equal load between spleen and liver and it ended the discussion. I’m not sure what else I can offer, I hope this helps

[Robert1959]

Hi Jesse

See if you can get your hemo to approach Amgen for you to be put on NPlate (Romiplostim) on a trial basis. I am from Sydney and this happened to me when I had ITP 6 years ago now. I still had my spleen and was given a large quantity of NPlate by Amgen which was held at the hospital where it would be administered each week or when my platelets dropped too low. Thankfully my ITP went away and has never returned and I credit NPlate for this. Interestingly I was also taking prednisone and Cyclosporine at the time and there was thought that this combination of treatments may have had something to do with me going into remission.

I hope that you are able to gain access to this treatment as it was the only one that had any effect on my ITP.

Rob

[Alex_MC]

Kindly ask your Hematologist to have Nplate (RomiPlastin) as ab alternative from Eltrombopag/Retuximab.

Though costlier (in Doha, Qatar) it cost USD1K/week for One Vial (250Mcg).

Effective for me after the failed two last mentioned meds.

Be safe.

[Camdenjane]

Have you tried Win Rho.

With me it last about two months before it drops in the 30’s