Upping Hydroxycarbamide dose: Hi all and wishing... - MPN Voice

MPN Voice

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Upping Hydroxycarbamide dose

Kari1961 profile image

Hi all and wishing everyone a healthy, happy 2020!

I went for my first Heam check-up on Monday 30th Dec since starting Hydroxycarbomide on the 2nd December - as a recap I'm PRV Jak2+ since 2012, a stroke survivor and venesection is no longer an available option.

Sadly taking HU hasn't worked on lowering my Hct... so they've upped the dose from .5mg daily to .5 five days a week and 1mg for the remaining two.

It's so frustrating! There was no change in the Hb/Hct my hemotcrit is still sticking at a stubborn .48 - I make sure to drink 2+ litres of water every day, I only eat fresh healthy food - lots of veg & fruit, and I'm a non-smoker!... However WBC and Plt have lowered a bit. My Platelets are now 231 from Nov 389, WBC 5.8 from Nov 8.7.

So, I have two questions - as I take my first 1mg of Hydroxycarbamide this evening!

* Is it normal to have to take a higher dose Hydroxycarbamide after only being on it for a few weeks?

* How low can my WBC & Platelets go before I start to feel REALLY ill?

I trust my Consultants decision, but it doesn't stop the worry, so I'll keep at the meds in the meantime.

9 Replies

I went from 500 per day to alternating 1000 and 500 to 1000 per day. The dose has to be calibrated to the patient. This may take a while and since the issue is your reds, remember that platelets turn over fast. Whites turn over more slowly and reds turn over more slowly still. So this could take a while.

Kari1961 profile image
Kari1961 in reply to charl17

Thanks for the reassurance charl17. Much appreciated.

mhos61 profile image
mhos61 in reply to Kari1961

Hi Kari,

I have ET, but at diagnosis my haematocrit was borderline high. I was put on hydrea due to age alone. I remember that my platelets responded very quickly. The haematocrit eventually lowered to a more acceptable level, but it took a bit longer.

Yes I went from 1 a day for my 1st week to 2 a day . ( Et Calr)

I started on 500 then after two weeks it went up to 1000 a day for about 4 months. Then over the 3 years I have been taking hydroxy my dose has fluctuated between 4500/week to 5500. It's a balancing act -at one point it was the drop in neutrophils which triggered a reduction in doseage.

In terms of how low your white cells and platelets can fall before you feel ill, I guess it will be a very individual thing. I have been very lucky with virtually no symptoms but my WBC have been as low as 3.07. My platelets have never been below 149 (it is the platelets which are my key problem in terms of over production).

Good luck, it will probably take some months of calibrating with your hydroxy.

I also have a JAK2+ PV, but have the reverse situation. I cannot tolerate HU and am on a phlebotomy-only treatment plan. If I do need to resume chemo at some point, I will likely opt for either Jakafi or peg-interferon. Not sure why phlebotomy is not an option for you, but it is often considered a fundamental element of managing PV. Do pay attention to all of your blood cell numbers. If your WBC gets too low, you may encounter immune compromise. The lower limit at my lab is 4.1 for WBC.

This is all a balancing act. How we each reach the best balance is unique to each person. Hope you find the right balance ASAP.

Kari1961 profile image
Kari1961 in reply to hunter5582

Hi hunter5582

Thank you for your reply.

My treatment used to be venesection and aspirin, which worked well for a few years. However, I was needing venesection every 6/8 weeks to lower my Hct... and my veins couldn't cope with it. They tried using a cannula, which failed...they got the Vascular Access team in to scan for decent veins, which failed. I tried using arm weights, hoping my muscles would push the veins closer to the surface, and that didn't work.

I haven't got the veins for someone who needs regular venesection - they are fine, kinked and burried deep. When the vascular access team used to scan for them I used to watch them disintegrate when the huge venesection needle went into them. It was getting to be very traumatic, and didn't accomplish the goal - my last attempt at venesection in November failed after just 80ml. So my Consultant and I decided 'no more'.

So, I will keep my fingers crossed the Hydroxycarbamide works as I am thankfully OK on it...even though it's not yet working. :)

hunter5582 profile image
hunter5582 in reply to Kari1961

Were I in your situation, I would opt for Jakafi or peg-interferon. Jakafi in particular is reputed to reduce the need for venesection. My opinion is colored by my own inability to tolerate HU, but it is shared by some docs, including the MPN specialist with whom I consult. He actually leans towards peg-interferon when chemo is needed.

All of these chemotherapies come with their own risk/benefit profile. None are without the potential for adverse effects. A HU dose of 1000mg/day is not unusual, but will increase your risk of adverse effects. Per the NIH, HU is "a highly toxic medication with a low therapeutic index." Toxic effects are fairly common at therapeutic doses, but not all people have that experience.

It sounds pretty clear that with a history of stroke, controlling the HCT is really essential. I can't help but to wonder why an alternative to HU would not be considered in your case. Please be sure to monitor for signs of toxicity and report them promptly to your doc if they do occur. Some docs blow off patient concerns about toxicity, but hopefully that will not be an issue for you. Your doc or pharmacist should have given you information about what to watch for and precautions about how to handle the HU (particularly if you are still sexually active).

I hope you get the HCT down to where it needs to be ASAP.

What does drink 2 liters of water do for you?

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