Blood levels other than platelets

[WileyFrench]

I have ET, no mutation. My platelets have nicely come down to below 400 with my current dose of hydroxy. Not surprisingly, I guess, other counts like white cells are down too. I’m interested in others’ experiences - do your blood levels show lower counts overall when taking hydroxyurea?

[Sarahjane100]

Hello. May I ask when you were diagnosed with ET? And did you have a BMB to confirm? Sarahjane.

[WileyFrench in reply to Sarahjane100]

I was diagnosed in early 2017, and did have a BMB. I only started taking hydroxy in July of this year after a TIA in May.

[Sanmob]

Hi ,Yes, I have PV. Hydroxy keeps my platelets down but I need to have a venesection if my red count goes up. My haemo

tells me that Hydroxy works on the platelets. Having said that, my red count has been stable for months until a few weeks ago when my HCT rose and I've just had a venesection.

All the best. Have a good Christmas. Sandra

[WileyFrench in reply to Sanmob]

A merry Christmas to you too, Sandra.

[Wyebird]

I’m confused, i thought that if you had ET you had a mutated gene. If not then your ET is secondary, meaning you have an infection somewhere in your body.

X

[WileyFrench in reply to Wyebird]

Hi Wyebird

My haemo says it’s primary (aka essential) because I have elevated platelets for no apparent reason. BMB concurred as did second haemo.

[CalrType1 in reply to Wyebird]

If no evidence of another disease causing the high platelets, and no mutation found, then et is the diagnosis. I can not remember the term. I will try to look it up.

[WileyFrench in reply to CalrType1]

I’d certainly be interested!

[CalrType1 in reply to CalrType1]

“Triple-negative patients” is the term for no mutation. You can find criteria for diagnosis of et on google search: World heath organization diagnosis criteria for essential thrombocytosis. Best to you and yours.

[WileyFrench in reply to CalrType1]

And to you. Thanks very much.

[john0084]

Do blood levels show lower counts on hydroxy? I think they should but my white counts have hovered around 11 since September. I have Pv take 5 hydroxy a week. I think it's kept my platelets normal and heamacrit at below 45 . I imagine if you didn't take them counts would prize.

[WileyFrench in reply to john0084]

Hi John - yes that’s my question indeed. I know the hydroxyurea lowers platelet counts and it appears to be nicely doing that with me. So I’m wondering if other people have also had the effect of it lowering the other counts as well.

[Kelly2 in reply to WileyFrench]

Hi, I was told by my doctor that they will eventually lower but they take longer than the platelets.

[CalrType1]

Hydroxy does suppress the production of all blood cells, especially platelets. I have et and doctor watches my CBC monthly to be sure platelets under control and to see status of other cells. Does not want others to go to low, and to watch for any evidence of transformation to MF.

[WileyFrench in reply to CalrType1]

I’m still doing blood work every two weeks - till the doc is satisfied with stability. My BMB showed no fibrosis which I was happy about (as are you I’m sure!), but I wonder what the blood results show that would indicate MF or progression to.

[CalrType1 in reply to WileyFrench]

My understanding is hemoglobin drops too low and white blood count rises is bad for us. But I am not a doctor. Mine CBC is stable now. Have a great day!

[CalrType1 in reply to CalrType1]

Not just once, but a trend.

[beetle]

My white cell count was consistently low on HU. The haematologist would mention it every now and then but was never overly concerned about it it seemed

[WileyFrench in reply to beetle]

Thanks Beetle. That seems to be my case too - at the moment anyway!

[Ladygolf]

Hi. I was diagnosed with ET 12 years ago. I am triple negative and had two BMB 10 years apart. Still is ET. I was on HU for 11 years taking 19 per week and my platelets never got below 550. My other counts - red, white, hemoglobin and neutrophils would routinely drop to dangerously low levels My hematologist would stop the HU for 10-14 days until neutrophils rebounded, then restart. He seemed happy if platelets stayed below 800. I am 65 and 6 months ago HU stopped working on platelets but continued to lower other counts. I am now on Anagrelide which has brought platelets down to 450 and all other counts are almost up to normal range. Good results but Anagrelide side effects are intolerable. Anyway, that is why we are monitored so closely, to make sure all counts are in an acceptable (not normal) range. Hope this helps. Merry Christmas to you and yours.

[charl17]

I have early MF. Took 1000 mg/day of HU for 4.5 years. My platelets went to high normal, white cells were normal, hemoglobin dropped slightly. red blood cells got large and the number of cells dropped. I developed an ankle wound and it refused to heal. I am now on Pegasys.