Blood counts dropping: Hello there after spending... - MPN Voice

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Blood counts dropping

Samiam1920 profile image
6 Replies

Hello there after spending 2 days in hospital and receiving unit of blood they got my hemoglobin back up to 8. Here we are 5 days later my counts have dropped back to a 7. I am going tomorrow to get another unit of blood. I have no signs of blood loss. So the doctor thinks that my body is destroying it’s own red blood cells? Anyone else have any experience with this? While my hemoglobin is 7 my rbc is now at 2.06 been on steady decline since hospital. Also was taking HU 2000mg daily that has been stopped for 2 weeks now.

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Samiam1920 profile image
Samiam1920
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6 Replies
Paul_1971 profile image
Paul_1971

Hi, I had and do have problems with blood counts falling sometimes. I have no physical signs of loss of blood, but having had an endoscopy it was discovered I do.

Have you had an endoscopy to see if you have a small bleed of any sort? Its possible without knowing its occurring.

Paul

Skeeter1956 profile image
Skeeter1956

Hi Samian sorry to hear your Hb count is falling, you must be feeling exhausted with a count that low . I'm sure your Heamatologist will get to the bottom of it after doing more tests .

Best wishes Skeeter .

lizzziep profile image
lizzziep

I was severely anaemic for months and months with no signs of bleeding, (I had camera up and down) so I was on ferrous sulphate for a long time, finally got back up to normal levels and then had loads of blood in my urine - ongoing investigations into that. I think our blood just does not know how to behave.

hunter5582 profile image
hunter5582

If you were on 2000mg HU daily then perhaps that is the issue. Would wonder if that dosing level overshot the mark. Myelosuppression

is a known Serious Adverse Reaction to HU (source ePocrates). While many people tolerate HU and benefit from it, it is not a benign substance. HU is a highly toxic drug with a low therapeutic index (AHFS drug information 2005. McEvoy GK, ed. Hydroxyurea. Bethesda, MD: American Society of Health-System Pharmacists; 2005:1035-40) .

I am a bit surprised that the doc did not discuss this with you, as it is at least a possibility. That is not to say that this what the issue is, but would certainly consider it. Here are a few links to reliable sources.

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

ncbi.nlm.nih.gov/books/NBK5...

Figuring out whether what you are experiencing is a change in MPN disease state or a serious adverse reaction to the hydroxyurea will be the next step. When people have an adverse reaction to HU, the symptoms will usually abate after discontinuing. It may take a while to see whether this is the case.

I hope you get answers as soon as possible. Also that you will be feeling better ASAP.

Dodders profile image
Dodders

Hi Samian, I had PV for about 12 yrs. My Hb started to drop and I became anaemic. After various tests, including endoscopy, I had a bone marrow aspiration and myelofisis was diagnosed which explained my continually dropping Hb count. I don't know about ET and any possible transition to MF but it be worth asking. If you have doubts about the diagnosis you should press for a second opinion from an expert haematologist who has specialist knowledge and experience with ET/MPNs. I wish you well

Wyebird profile image
Wyebird

I’ve only just read your post. I do hope things gave stabilised now.

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