Querying Pegasus dose

[Mymble]

Hi everyone

I’d be really grateful to hear from anyone who has experience of Pegasys lowering their counts below normal but no reduction in dose being recommended.

I’m JAK2+and have a diagnosis of PV through a BMB but it was high platelets (800ish) and an enlarged spleen that led to investigation. I’ve never had high HCT - the highest it’s been is the higher end of normal but I was considered high risk because it was also found that I had a chronic splenic vein thrombosis.( As a result I have portal hypertension and gastric varices). I was started on Pegasys straight away building up to 90 mcg weekly and as my platelets started falling and then went below 150 it has been reduced to 45mcg weekly. I’m also taking a blood thinner (Dabigatran)

For the last three tests (monthly) my platelets have been around 110 and my HCT around 36 but my WBC are now below normal and falling a bit more each time I have my bloods done. My Hgb is just about normal.

I have asked at my last three appointments if we should maybe space out my Pegasys dose a bit but the answer is always I don’t need to worry about bleeding until platelets drop below 100 and it’s my neutrophil levels that are important. But I don’t understand the reason for keeping my platelets below normal when my HCT is well within range and my WBC are low. It feels like my platelets are unnecessarily too close to being below 100 for comfort bearing in mind I have the risk of bleeding varices and I’m also on a blood thinner. I’m also worried about my WBC falling -I’m double vaccinated but still think I need the best immune system I can muster!

Has anyone else had the experience of their doc being happy to keep their counts below normal and was there an explanation for it?

Apologies for the long post and thanks for listening!

Best wishes to you all

Emma

[Manouche]

You said 3 important things:

1) HCT within range

2) Hb within range

3) platelets within range

A dream for many specialists!

Haemos are generally very satisfied with such good figures. Your WBC are a bit low but they prefer low ones than high ones. Most importantly, they are confident that adjusting your dose later on will make your numbers look even better. I believe they are right.

[Mymble in reply to Manouche]

Thanks Manouche. I feel really fortunate that the interferon has worked so well for me with very very mild side effects. But my platelets aren’t within range they are low and my WBC has never been high or of concern, so I guess I’m curious about why we would not adjust my dose to try to get everything WNL now rather than risk my platelets dropping even lower. I have an appointment with my hepatologist in a few weeks and I know she will be questioning the platelets-she was concerned when they were around 150. But as you say the news is good from an MPN point of view. Thanks for taking the time to reply 🙂

[hunter5582]

You are correct in thinking that there is no particular value in having you platelets that low. It is the erythrocytes that need most to be controlled. As long as your Neutrophils and Lymphocytes do not get too low you should be OK. I do agree that it is a concern as I am experiencing the same thing. (NEUT=ant-bacterial, LYMPH=anti-viral) I decided to consult my Integrative Medicine doc abut boosting the immune system without doing anything that would cause problems. She recommended supplementing with Reishi and Astragalus. It does seem to be helping a bit. The proof will be in NOT getting infections.

Given that you are taking Dabigatran I am wondering if you have had a thrombotic event. That could warrant more aggressive treatment. Regardless, you are asking a very reasonable question and your hematologist really should explain the risk/benefit analysis if your current treatment plan to your satisfaction. If you would feel more comfortable with higher target levels for thrombocytes, erythrocytes and leukocytes then you can explore what that would look like in terms of risk/benefit.

I expect this is not a black and white situation. It is about risk tolerance and which risks you prefer to take. It would be reasonable to seek a second opinion from a MPN Specialist at this point. What matters is for your concerns to be addressed to your satisfaction.

Hope you get answers soon.

[Mymble in reply to hunter5582]

Thank you Hunter. I think you have put it well - it is a risk/benefit analysis and I would like to understand the factors involved and the weighting they have been given a bit better.

I have had a thrombotic event - a splenic vein thrombosis. It caused me no trouble so I was unaware of it and it is now chronic, with cavernous transformation portal hypertension and gastric varices. This only came to light after investigations for an enlarged spleen and MPN diagnosis. Hence, treatment with interferon straight away even though I was ‘only’ 50 and my platelets 800 at their highest and HCT always WNL. I guess that’s ‘masked PV’. So what with the low platelets and the dabigatran and the risk of rupturing varices (although I do take another medication to help prevent that) I’m more concerned than I might otherwise be about this quite aggressive approach to keeping my counts low. I suspect that the prospect of returning to the office next month, at least for some of the week, now that COVID restrictions are lifted here has made me question the impact on my WBC a bit more as well.

Thank you again for your thoughts and the information about supplements -and I’m so pleased to read from your updates that interferon is working out well for you.

All the best

Emma