Higher platelets and RDW 1 mth on 500 mg hydroxyurea and aspirin daily

[patriciapugliese]

On Hydroxyurea for 1 month platelets went from 818 to 823 RDW went from 14.8 to 15.6 Jak2 V617F positive quantitative value 10.8 I seem to be going in the wrong direction. HELP

[hunter5582]

Not to worry too much at this point. A few key points.

It is normal for RDW to increase when on HU. HU induces macrocytosis. This causes RDW to increase. Some docs use increase in RDW to monitor patient compliance since it is expected. NOTE RDW = Red Cell Width distribution. It is a measure of the range of size of RBCs.

Platelets normally range by up to 100k in a single day based on what is going on in your body. It is the trend over time that matters, not a single lab. While HU is faster acting, it still takes time to have a clinical benefit. What matters is not the absolute number of platelets. it is the symptoms you experience and how your blood cells behave.

MPN treatment is a marathon, not a sprint. It is important to take the long view and not sweat things in the short-term. The aspirin is very effective for most people in preventing thrombosis and microvascular issues. Give the HU time to take effect. if it turns out not to be the right choice for you there are other options.

All the best.

[patriciapugliese in reply to hunter5582]

I started taking pycnogenol 100 mg as well as baby aspirin. I have my appt today. You have a calming effect on us newbies. I don't like my doc but he's the only one around have appt in July with MPN specialist (soonest I could get) Because Pycnogenol is over the counter I'm pretty sure my Doc is going to frown on it but I guess I'll tell him today.

[hunter5582 in reply to patriciapugliese]

Definitely tell the doc, but it is your choice not his. It is true that Pycnogenol has the potential to potentiate the blood thinning impact of aspirin. That is true with a number of different supplements. If you feel Pycnogenol benefits are worth the potential adverse effects then it is your right to choose to use it. Note that this is why I consult with an Integrative Medicine doc who has the requisite expertise in complementary health interventions and how the interact with medications.

[patriciapugliese in reply to hunter5582]

Are you in the US I never heard of Integrative Medicine until this blog

[hunter5582 in reply to patriciapugliese]

Yes i am in the USA. There are two very similar approaches to medicine. Integrative and Functional medicine. Some docs do both. These docs are found in many countries, but not always as part of a healthsystem. patronusmedical.com/blog/fu...

Functional Medicine docs

ifm.org/find-a-practitioner/

Integrative Medicine docs

fonconsulting.com/resources...

[Elizka in reply to hunter5582]

IMO, if possible, you need a functional medicine doctor, hematologist, and our regular GP. In the US anyway.

[hunter5582 in reply to Elizka]

That is that I do. I have a whole boatload of "ologists" 🥴

[Solyesh]

We are all different but it took couple of months for me to see any reduction in platelets on HU. 818 to 823 is essentially stable. Are these values the running rate for your platelets? The first indication I had that HU had started to work was that it halted my upward trend in platelets (before they started to come down).As Hunter said the increase in RDW is normal and expected and my MPN specialist stated - "that's how I know you are actually taking the medicine".

[Elizka]

And only the GP and the HEMO collaborate. I'm the one that connects the dots.

[EPguy]

Here is a plot of my response to HU. The 1st month is similar to your experience, no reduction. See my next reply for RDW.

So your results at least match mine so far, and if that continues you will be in a good place for PLT.

PLT vs HU

[EPguy]

Reply #2, RDW

Here is my RDW plot. It went nuts at the start. I do have some that are out of bounds, corpuscular and hemoglobin volume are two. My Dr is not worried, as Hunter says, some of these can be an HU compliance check.

RDW vs HU

[EPguy]

You indicate your allele of 10.8 is in the wrong direction. That is low among MPNs. Has it changed from an earlier test?

[patriciapugliese in reply to EPguy]

JAK2 Qt, Rfx CALR/E12-15/MPL

Test Current Result

and Flag Previous Result and Date Units

Reference Interval

JAK2 V617F Mutation Quant Rslt ⁰²

POSITIVE

The JAK2 V617F mutation is detected in the provided specimens of this individual.

Quantitative Value: ⁰² 10.82

%

Background: ⁰²

[EPguy in reply to patriciapugliese]

Thanks for the info. So your Jak 2 has one reading so far at 11%. The .82 is actually more precise than possible as I understand it. This number does not normally change very fast, usually measured in years, while the blood numbers can change much faster.

Did they check for other mutations? This is "next Gen Sequencing" and is useful to have for future reference. Mine checked for 54 others.

I started HU at 1,000/day till just after the low point seen in the PLT chart here. I was miserable and Dr agreed to reduce to 500/day. PLT rose to the high seen in July and I felt a bit off, so I now take just over 500/day on average. Still don't feel great but it's all relative.

If I did it again I would be ok on the lower dose to start and a slower reduction, but there is a risk while the numbers are high so my suffering probably made sense to get lower fast as possible. Dose should also vary with weight but I don't know if they actually factor that.

[patriciapugliese in reply to EPguy]

Thank you! They doubled my HU to twice a day (500mgx2) go back 2 weeks; Did you double your HU after a month?

[patriciapugliese]

Only the test I just posted

[catkinspolymer]

I have been on HU and aspirin since 1996 , I started on 18 x 500 mg a week but this has steadily dropped to 9 tablets a week . I t does take time to find the correct dose and for the body to settle down . I am still quite well but get some fatigue . I have outlived all my healthy college friends . even the blood counts have to be monitored.all the best Town Crier