Confused !!

[ciye]

Spoke to my haematoligist earlier, my count was 461 she suggested uping my hydroxcycarbnmide I already take 1000 mg daily with clopidgril so said no. Lots of people on here have much higher numbers and only take aspirin. I seem to be over prescribed she did ask if I was well as bloods indicate otherwise.... They always do.

[Swede]

Hi,Clopidogrel is an antiplatelet medication I take Hydroxycarbamide aswell and mine are between 350-450. You need to ask the doc for an explanation.

[Mostew]

Which I had those levels!!!!!!

[ainslie]

those numbers are good, some haems dont treat platelets unless they are way over 1000 unless the patient has symptoms, and of course less drugs the better, maybe worth a second opinion

[ciye in reply to ainslie]

That's why I'm confused. Hopefully my nexr consult will be face to face and I can get some answers. I feel at the momente it's a case of she is a doc and I am not.

[PhilReade in reply to ciye]

I’m on 1500 mg a day and my platelets are 450 I’m 65 with prior DVTS and TIA and on Apixiban was originally on Clopidogrel I’m on two blood pressure medication also and statins

My platelets was around 1000 when I was 59 and had a angina attack that’s when I started Hydroxycarbamide

I’m under Professor Sommervaille at the Christies hospital Manchester he’s one of the top MPN experts in the country

[SusieG60 in reply to ciye]

How old are you and have you had any problems. Your levels arnt that high maybe theres another reason to increase meds or maybe your doctor just panics, i had a temporary dr that wanted to up my hydrea i refused. X

[ciye in reply to SusieG60]

59. Apart a slightly enlarged heart, no. I had a lower right lung lobectomy in Oct, but that was a separate issue I have been on the 1000mg since June.

[Hidden in reply to ainslie]

Dead right!!

[Yorkstyke]

Hi, well I'm on 100mg Monday to Thursday and 150mg Friday to Sunday. My bloods were almost 1600 when diagnosed, holding at around 380 with meds. If I reduce it quickly starts to rise. I found the meds difficult at first, now my bodies adjusted and coping. Never feel 100% but definitely better on the meds.

[Bluetop]

As we always say on here we are all different and I guess it depends on your other blood counts, symptoms, trends, frequency of testing among other things. My platelets had been 350-400 for about a year then shot up to 650, I increased my hydroxy by 500mg/week and they have come down to 470 over 3 weeks (normally I have blood tests 3 monthly). My haem has suggested waiting another month and if they don't come down below 400 then, we will increase the dose once more. My other counts are generally good but he is keen to keep platelets below 400, but also willing to test my blood more frequently when things aren't right. To try to keep the platelets down I also take curcmin regularly and try to use my diet -it doesn't always work, but like you, I don't like increasing my hydroxy dose.

Good luck with those platelets!

[Lifam]

With your platelet level is just, only just merely over the normal range, I really think you need a second opinion. When I was first diagnosed after BMB, my platelets were 670, I was put on HU 500mg daily with 75mg clopidogrel and platelets have been within normal range ever since with good diet and keep active. I don't understand why you have to take 1000mg of HU and need to to take even more now. Is your haematologist a MPN specialist? Hope you have it work out soon.xx

[ciye in reply to Lifam]

She is not a specialist. Not even sure how to find one.

[Runner999 in reply to ciye]

I take 1000 HU per day plus clopidogrel that I was already on for peripheral arterial disease (8cm stent in thigh because there was only 15% blood supply to lower leg). They upped mine when platelets refused to reduce below 500 on 500g daily They have since been mainly 300 - 400 - but as 460 is near normal levels it would seem odd to increase - especially if is just latest reading.

[Wyebird]

Age and other medical conditions especially stroke will have an impact on your dose. I’m on 100mg a day 150mg on Saturday and Sunday plus 9 anagrelide a week x

[Lifam]

I thought yours is a haematologist. I live in Australia, If you live in UK I am sure some members in this group would have some idea where you can find a MPN specialist, MPN specialists are experienced treating our conditions whilst most doctors even some specialists are not even familiar with our conditions. Wish you could find a solution soon. X

[Cja1956]

Did she say why she wants to increase your dosage? I’ve found it really depends on your symptoms. My hematologist would be very happy if my platelets were at your level. They are barely above normal. My platelets are in the 600’s and I also take 1000 mgs of hydroxy every day. I’m post ET MF, so I take another pill called Inrebic to keep my anemia at bay. I agree with the others, it might be better if you got a second opinion.

[hunter5582]

Suggest it is time for a second opinion with a MPN Specialist. Here is a listmpnforum.com/list-hem./ . Many hematologists lack the KSAs to provide optimal treatment for MPNs due to their rarity. Given that you not only have a unique presentation of your MPN but also complicating cooccurring medical conditions, consultation with a MPN expert is especially important.

As others have indicated, there is typically no need to sanitize platelet levels to a certain number. It is about controlling symptoms, not lab values. Bear in mind that platelet levels can vary by as much as 100K in a single day as a function of normal bodily responding. Due caution in preventing thrombosis is certainly warranted given your complicating medical conditions; however, you have to balance the risks/adverse effects with the treatment choice you have. There are less toxic options than a higher dose of hydroxyurea available to you if you do need more aggressive cytoreduction.

All the best to you.

[Jsb45]

Ciye,I'm here in the USA and just had a phone visit with my hematologist. I have PV and my levels are controlled through phlebotomy and Hydroxyurea. They have stayed low using this combination. He asked me if I wanted to increase my hydroxy, I said no. And asked why would I? I am ok with a phlebo about 3 times a year, checked every 8 weeks. I get drained if my HGb goes over 15. The Dr. said he was required to offer a change in meds at every visit and I was NOT required to accept that offer. So I didn't. Maybe this person being new confused offering and requiring you to up the dose.

Best wishes