PCV and Monocytes

[lucieboo]

I have had PCV for nearly 11 years, well controlled with Hydrea, re. haematocrit, red blood corpuscles, but the white cell level has gradually increased and this year Monocytes have gone from zero to a quite alarming level, now 1817/mm3. No idea why and the doc doesn't know either. Is it a problem? I see the haematologist in February.

[ChattyPanda]

Sorry, I have no idea about monocytes. I was hoping for some insight from others’ replies to you. I hope it doesn’t matter much and that you stay as stable as you’ve been.

[hunter5582]

"Monocytosis is an increase in the number of monocytes circulating in the blood. Monocytes are white blood cells that give rise to macrophages and dendritic cells in the immune system. In humans, monocytosis occurs when there is a sustained rise in monocyte counts greater than 800/mm3 to 1000/mm3." Wikipedia.

The short version is that yes it is a concern. PV can also cause leukocytosis and thrombocytosis in addition to erythrocytosis. Leukocytosis increases the risk of thrombosis associated with PV. I have a mild elevation in basophils. It is a function of the PV and somethin we keep an eye on. Monitoring the totality of blood cell levels is part of managing any MPN. Watching for signs of progression of the disease and modifying treatment as needed is the core of MPN treatment. The good news is that there are other treatment options that may be more effective than HU. Many people are getting excellent results with PEGylated Interferon and Ruxolitinib for PV.

Suggest you get ion touch with your hematologist ASAP. If you are not already seeing a MPN Specialist, it would e a good time for a second opinion. Here is a list just in case you do not have one. mpnforum.com/list-hem./

Hope you get answers soon.

[lucieboo in reply to hunter5582]

Thank you very much. I will talk to my doc and see if I need to visit the haemo earlier, it might be a good idea. I am in France and my regular haemo left so I have an appt with a new one at the cancer hospital in Toulouse. As they have had to take on extra patients it may not be possible, but I can always try. My basophils are up too and I think this is the main cause of the itching. After 11 years and at my age it would not be surprising if the disease is progressing. Good luck to you.

[hunter5582 in reply to lucieboo]

You are correct in linking the increase in hematopoiesis to the itching. Deregulation of the JAK-STAT pathway causes a downstream impact on the release of histamine, hence the dreaded itch. Ruxolitinib is known to be particularly effective at treating this issue.

I hope you are able to see a MPN Specialist rather than a regular hematologist ASAP. Meanwhile, all the best.

PS-FYI - I get itching, but it is related to eczema outbreaks. My dermatologist treats with Eucrisa (crisaborole) which is a topical PDE4 inhibitor. It is very effective. The dermatologist told me it would work for pruritis as well.

[lucieboo in reply to hunter5582]

Thanks Hunter, I've noted that down. Ruxolitinib may be a possibility if it has become cheaper, otherwise I may not be eligible at my age (78)..I'm lucky to be alive still...I have heart problems also. Sobe it!

[hunter5582 in reply to lucieboo]

A big alas to ageism in the practice of medicine. Just because HU is cheaper does not mean it best meets your needs. Formularies in some healthcare systems are overtly discriminatory when based on age. What matters is which medication best suits your needs. Hopefully the itch (pruritis) may tip the balance since that is a clinical indication for the use of RUX. That and it may be more effective overall with less toxicity than HU. Sadly, some systems may not care about the latter. I hope that is not the case where you are and you can access the right med based solely on your needs.

Hang tough - which it sounds like you already are doing the young age of 78. I am merely 65 - not as spry as I used to be but still getting along.

Meanwhile - all the best you you.

[lucieboo in reply to hunter5582]

Thanks again. Yes, I am pretty tough! I don't know that they discriminate against the aged here in France, but for sure less so than in the UK. If Ruxo. is better for me it is probably cheaper for health and social care in the long run and they do consider those things here. The health services here are excellent, but a bit stretched here as elsewhere due to Covid. Keep going Hunter, take plenty of exercise, walk in the countryside and above all keep cheerful, we only have one life. Good luck!

[hunter5582 in reply to lucieboo]

I am really glad to hear that ageism does not play a role in healthcare decisions where you are. I have heard others say positive things about the healthcare system in France. Here in the USA, healthcare is all over the map. We have everything from gold-standard high-end care to systems that actively work to limit people's access to doctors, especially specialists. Medicare, while better than nothing, does not improve access to healthcare for many of us who already have insurance. In fact, going on Medicare can make your healthcare cost more if you are in the upper middle class.

I do maintain an active lifestyle and seek to hang tough. I had put on some weight, so I lost 50 pounds. I have been practicing Qigong and recently added learning Gung Fu to the list. I live in the country so walks are easy to take. I live in the mountains, so walks usually involve hills. In the last couple of years I have had several surgeries, including heart and brain surgery, so hanging tough has been a must. PT for a bad knee has helped to ratchet up the cardio. Exercise and attitude do have a lot to do with aging well. And sometimes as our military friends say we just have to "Embrace the Suck." Happily, it is not all "Suck." Plenty of good to still enjoy.

All the best to you.

[lucieboo in reply to hunter5582]

Wonderful! Yes, the USA is difficult for healthcare. My younger son lives there and can afford insurance whilst he is working but says it will not be possible when he retires...so I think it will be Europe.

Keep on going on and all the best.