ET AND LOW NEUTROPHILS

[Mardihel]

Hi all, I have ET jak2 and have been taking Hydroxy for 5 years, my platelets now 395 but I have low neutrophils, catch cold easy and can sleep for England. I prefer higher platelet count and better white blood cell counts, any advice will help. I am presently on 2x500mg hydroxy daily, anyone else with this problem.

[AndyT]

I’m on Pegasys rather than HU but have also had low neutrophils at times. When that happens we’ve adjusted my dose down a bit or increased the interval between doses, to let the neutrophils recover and touch wood that’s always worked OK.

Maybe discuss with your doctors whether you could adjust your HU dose a bit to increase your neutrophils while still keeping your platelets under control - it’s a balancing act that sometimes needs fine adjustment!

[Cassandra61]

I am on Hydroxy too and I think it hits my neutrophils too. I had a year of really struggling to get over anything such as a cold and I had COVID twice and it took weeks until I felt better. I am now on 500 Mon to Friday and nonr at the weekend which seems better. My last neutrophil count was 2.75 which they seemed happy with but I still worry a bit. I try everything to keep healthy and keep away from infection if possible. Have you picked up any tips? I suppose it is a balancing act though and I hope you stay well.

[Mardihel in reply to Cassandra61]

Thank you so much

[mhos61]

How low are your neutrophils? Are your Haematology team concerned by this?

Quality of life is important when considering treatment, and it maybe time to consider a lower dose of hydrea and see if there’s any improvement or consider Pegasys as a treatment. Many members have had good results on this treatment.

[Mardihel in reply to mhos61]

Thank you for your comments 1.7 lowest ever feel full of cold always

[Mardihel in reply to mhos61]

1.7 I agree with you am seeing consultant ASAP.

[mhos61 in reply to Mardihel]

Let us know how you get on!

[hunter5582]

You are correct to think that HU affects all types of blood cells. It works by interfering with DNA activity in hematopoietic stem cells, suppressing all hematopoiesis. HU can compromise immune response, which is why things like live vaccines are contraindicated.

It is very reasonable that you would prefer higher platelet count and better white blood cell counts. There is no evidence that there is a significant benefit for people with ET to have platelets under 400. There is no linear relationship between PLT levels and risk of thrombosis. That is why some MPN Specialists use 600 as a target when a numeric goal is used. silvermpncenter.weill.corne... Other MPN Speciaists now consider the delta (degree of change) to be the more relevant target.

The key is to have an individualized goal based on each person's MPN profile. The benefits of achieving that goal must be balanced with the adverse effects. Neutropenia that results in increased infection risk is a significant adverse effect. My care team monitors the neutrophils, with the requirement that NEUT > 1.0 [10^3/uL]. While mild neutropenia may be tolerated, anything less than 1.0 is clearly contraindicated.

Suggest that you review your treatment goals and plan with a MPN Specialist. It sounds like a different strategy should be considered.

All the best.

[Mardihel in reply to hunter5582]

Awgh thank you so much Hunter, have requested personal meeting with consultant, and I am taking less hydroxy neutrophils 1.7 lowest ever been.

[Mardihel in reply to Mardihel]

Does anyone take supplements on top of hydroxy?

[hunter5582 in reply to Mardihel]

I do take supplements on top of Besremi. Curcumin, L-Glutathione, and SPM Active are to help control inflammation. I also take a reishi-astragalus blend to boost immune response. The last time I was on hydroxy, I was taking curumin. It was not a problem for me.

Note that I consult with an Integrative medicine doc regarding the use of supplements and let my care team know when I decide to take something. I also check with a supplement-drug interaction app. reference.medscape.com/drug... If something is biologically active enough to help you, it can also hurt you nd interact with things. Complimentary health intervention can be very helpful but must always be used in the context of you unique MPN profile.

[hunter5582 in reply to Mardihel]

NEUT > 1.7 would not usually be a problem. Your doc may not be concerned about the number. If you truly have a greater propensity for infections, that is something to discuss. Do also note that there are other leukocytes to pay attention to. Lymphocytes are also important for fighting viruses. Basophils and eosinophils also have their own roles in immune response.

Hope your meeting with the consultant goes well. If you remain concerned, you may want to seek a second opinion from a MPN Specialist.