Platelets back in range now, thought my Hct continues to elevate which I get a monthly phlebotomy for...though my white blood count has consistently been dropping and is now well below range.
Only on 45mcg - I have a follow up on thursday next week.
Anyone else deal with balancing the benefits of lowering platelets while also lowering wbc?
This can be an issue with Pegasys. Hope your WBC has settled down in your next blood test.
Hi I had a similar situation when I went on Pegasys. It didn't completely control the HCT so I had to have regular and then random venesections. And they caused the platelets to rise and fall. The white count had gone to 26 and was the reason the haematologist decided on medication. But over the years it has gone too low and then up again. It is more stable since I stopped having venesections. And I achieved that my keeping HCT at around 39. Once it gets to 40 it jumps to 44 and I have an agreed cut off of 42. At that and above I have bad headaches and very red face plus other symptoms. I is good to keep a spreadsheet of results. On your next visit the doctor can bring up the hospital copy of them on a graph and focus on the white results. Then you can see the pattern. It's a very helpful analysis and when I am shown it for the HCT I relax.
Good luck and i hope your white count stabilises.
Mairead
Hi I have been on pegasys for 2yrs but I am having problems with my WBCs and platelets gradually keep dropping and both are now right at the bottom of normal although my HCT remains around 40-41, this is despite only injecting 45mcg every 3weeks. Hoping it will just stabilise and not keep dropping as doing well on Pegasys. Amazing as at the start platelets were well over a million and WBC 20. Be interested to know how you get on.
I’m in same boat. I assume it’s your RBC that is the problem?
My WBC and Platelets responded very quickly but my RBC took maybe 18 months and at one point I was on 120 mcg every week.
Now on 25mcg every 2 weeks having overcooked everything!
My lesson was don’t chase RBC too aggressively. Better to tolerate venesections, keep WBC in normal range and hope that with time RBC comes into range. RBC is normally last to respond
The good news is that despite my low dose, my AB keeps coming down, was 80% two years ago, now 10%. Hence Pegasys works in mysterious ways so once it’s working, give it time.
ie in my case, it now appears to be working well at very low doses.
You don't say how long you have been on Pegasys. Platelets turn over very fast. Whites turn over slower and reds turn over even slower. In my case it took 4 months to get my hematocrit below 45. I don't think 6 months is uncommon.
It is interesting and informative hearing the variety of answers from other members on the forum on this topic. It also supports the approach the MPN Specialist I see uses. He does not support "sanitizing" blood cell numbers. He focusses on the actual symptoms the patient is experiencing. We each seem to respond differently and need an individualized approach. For me, this means keeping HCT between 40 - 45, letting platelets cycle between low 500s - mid 700s (note - they have done this for 30+ years with no thrombosis), not worrying about iron levels unless HCT<40 (take very low dose iron if positive for symptoms of anemia), do not worry about leukocytes as they are WNL.
I think the question to ask is whether you have had symptoms (e.g. thrombosis) when your platelets are over 450. With your leukocytes significantly below norm, you may well have immune compromise. Some of the current research is showing that the greatest risks with PV is not the thrombocytosis per se - it is the erythrocytosis and/or leukocytosis. There is not a straight line correlation between your platelet levels and risk of thrombosis when platelets are below 1 million.
So the answer is a bit complex. What really matters is that the answer depends on your unique MPN profile and how the condition affects you. The standard treatment protocols are general guidelines, not necessarily the right treatment plan for you. Getting effective treatment means actively engaging a doc who is a MPN Specialist (not just a general hematologist) to address your concerns, your symptoms, and equally important - your preferences about your treatment.
Based on what you stated - it sounds like your treatment plan needs to be tweaked. Suggest you think about your own history with the MPN, what symptoms and risks are your primary concern, and what your preferences regarding treatment are.
Hope that helps. All the best to you.
As usual, thank you Hunter for an incredibly thoughtful response. I am only 4 months PV JAK2+, 11 weeks on peg....All kicked off after having experienced a TIA in Jan with platelets at the high end originally at 595. So I hear you on it not being a straight line correlation for risk of thrombosis.
I have a follow up with my hematologist on thurs - so we’ll see what he thinks. Much appreciated. And love hearing from others too going through a similar thing. Thanks all.
So you are likely symptomatic for thrombosis, unless they specifically said this was a hemorrhagic event. Kind of the opposite of what I experienced with the brain tumor that was hemorrhagic/surrounded by edema. With a TIA having already occurred, I am thinking you will likely want to be a bit more aggressive with treatment to ensure you do not experience a full-on stroke. The combination of erythrocytosis + thrombocytosis is particularly dangerous. There is a recent piece of research that theorizes that part of the problem is that those of us with PV have particularly "sticky" erythrocytes and this is what predisposes us to thrombosis. It is just a theory, but it does make sense that it could apply to at least some of us.
Hope you can get your leukocytes back into the WNL range while still controlling the thrombocytosis and erythrocytosis ASAP. I am confident you can find the right approach and get things balanced out in a better way.
All the best to you. Stay well and stay safe.
Thats an interesting thesis about the stickiness of the RBCs....how would one detect the relative “stickiness” of a person w PV vs a more “normal” individual? I know the docs can look at size and quantities of blood components under a microscope, but detecting a quality like that I presume would be more difficult for visual inspection?
Here is the article I was refencing. ashpublications.org/blood/a... .
This is very high end biochemistry/cellular biology. Way over my head. I had to look up quite a lot of the references just to dimly comprehend what it is saying. Once I have a better basic understanding of this, I am going to look to see what else is out there on this topic as this has peaked my curiosity. The article is not a recent as I remembered (2007). Perhaps there is more out there on this topic.
Meanwhile, I do hope you get some answers to your current concerns. There are some drug combo approaches that look promising. I have not dived into the current research on PEGylated Interferon/Ruxolitinib in combination, but my understanding is that there is some promise to this approach. It may be that you just need to dial back the Pegasys a bit.
One thing I would do is to be sure to do whatever you can to strengthen your immune system. There are some complementary health approaches that might be helpful. If you are interested in this, I would consult with an Integrative/Functional Medicine Specialist as most traditionally trained Western medicine practitioners are not familiar with these interventions.
All the best. Stay well and stay safe.
Whoa - yeah the title alone is daunting! I’ll go through it. Much appreciated Hunter!
Pegasys starting dose
Update on Pegasys for ET
Pegasys
Pegasys!! 
Pegasys
