ITP Support Association
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Low platelet count of 5

I have been doing so much reading online about my mums case of low platelet count but because her situation is unique I dont really have any affirmative answers. My Mum underwent a stemcell transplant for Renal Cell Carcinoma 14 years ago and ever since has had a lot of GVHD complications but this latest one where for the past 6 months her platelets have been dropping is now more serious, Last week they dropped to 5 so she was admitted to hospital, They have tried things like Intagram, Prednisone and last week gave her a high dose of dexamethasone for 5 days. Platelets went up to 71. She stopped Dexamethasone yesterday and overnight they have dropped back to 52, She is on standby now to have her Spleen removed. I am wondering what the chances are of the spleen removal working and fixing her platelets and because they are dropping so fast after any treatment stops I am really concerned. Anyone that can help or provide more detailed info I would really appreciate

17 Replies
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Try Rituxan. It worked for me

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Hi, Was your situation very similar ?

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It is hard to say as we are ITP patients. However, for ITP patients it is advised that spleen is removed after it's proven that it indeed destroys platelets, there are special tests for this. E.g., I had spleen removed years ago without tests and still relapsed. There are a few lines of treatment available, including rituxan suggested below, MMF, eltrombopag, etc.

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What is the name of the test check the spleen ?

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Indium Dye Test - only done at Barts Hospital - get them to try NPLATE injections long before they start taking spleen out - a count of 52 is considered safe.

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Hello, I had my spleen removed 34 years ago, when my platelets were 10, however it was only a couple of years ago that the doctors at my blood clinic thought that they would test my liver to see if that was having an affect on my count, it runs between 14 > 25, been that way for years, as it happens it tested negative.

Given your Mum's history, I would ask her doctors to also test her liver as well, before the spleen op, that is if they have not done so already.

Chin up, regards

Bill

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Sir you say liver test. What is name liver test? I visit doc and can say just liver test or any special liver test. Pl tell me

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A normal platelet count ranges from 150,000 to 450,000 platelets per microliter of blood. Please check your 5 figure as a person would be deceased with this count. They need to try everything else before they think about removing organs.

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We often refer to our count without the ,000 to make it easier ie 5 means 5,000. As for being deceased from a count of '5', many of us here have actually had a count of 0 (as in zero) and have lived to see another day - the problems of nose bleeds, blood blisters/ ulcers in the mouth, impressive bruises and minor internal bleeding at that count were not pleasant but rarely it proves to be life threatening.

Robert

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My count was 4000 (and I was not deceased) . Has been in high normal range now for 3 months (262,000 and 302,000). I know this was dangerously low, but I did not feel bad. Had bruising and pecteckia (sp) which took me to doctor. It must be different for everyone.

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My mum died last night on the operating table from a massive heart attack during the spleenectomy . I am wry distraught as I was extremely close with mum 😰😰

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I'm so sorry. I just lost my father. Its a horrible feeling.

My thoughts are with you.

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So Sorry to hear that. My condolences to you and your family. With cancer I suppose no operation is an easy or safe one. My mother died from Non-Hodgkins Lymphoma years ago and we were very close too. It's been 24 years but I miss her still every day and am I will forever. Just try to go on, that's all we can do.

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My deepest sympathy.

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Hi,

indium test, I think, your doctor should be able to read up the tests required, I think also there is a also need to check for Helicobacter pylori in the gut that sometimes can be a cause of ITP, once again your doctor can check for this.

I hope this is of some help.

Bill

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Hello I’ve had low platelets 24years I e had one or 2infusions. But now my platelets are 5to 7 my consultant wants me to,have ru taxi about I refused I take 11/2 grams of vit c daily and modicure no drugs thanks they don’t work in the long run what I take keeps me stable so my pharmist tells me

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I had my spleen removed and it made no difference to the platelet count dropping.

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