Not so good news - after 11 months of Besremi, WBC, RBC, Hemoglobin, and HCT were all below normal

[Pat032018]

For the last 11 months, WBC, RBC, Hemoglobin, and HCT were all trending lower; and in general CBC and CMP numbers have been normal for the last 9 months until last week (the 11th month).

I hope this is just due to a higher dose than necessary. I just had 100 mcg of Besremi, and it was 150 mcg for around 6 months. I will have lab test on mid-February.

Best wishes to all!

[hunter5582]

It certainly could be that all that is needed is a dose adjustment. Sometime we overshoot the mark. that happened to me when I was on phlebotomy + hydroxyurea, then phlebotomy-ony. Ended up with HCT at 32%. Actually had to take iron tabs for a while. Hopefully your labs will look better soon.

Please do let us know how you get on.

[Pat032018 in reply to hunter5582]

Thanks for the comments Hunter. You and my MPN specialist have the same opinion - and I hope that will prove to be the case.

[Anag]

hello Pat

I am now in Besremi. When I was on Anagrelide, I was having heart symptoms. Because it was working well we tried to keep the medication low and the platelets higher in a non-danger zone of about 600 and I wasn’t having the heart palpitations. I personally and also my doctors, don’t find it necessary to keep the thrombocytes in normal range. They say it is better for the thrombocytes to be a bit higher be symptom free and feel better.

I have been on 100 µg until now and depending on my blood test tomorrow, Monday I’d start with 150.

wishing you all the best!

Anag

[Pat032018 in reply to Anag]

Thanks Anag for sharing your thoughts.

[ainslie]

Pat

The most likely explanation is too high a dose, correct me if I am wrong but I think you were diagnosed in 2018 so it would be very very unusual for anything else to be wrong, we’ve all been on the worry step when things APPEAR to change, I have overdone. Venisections and my Rux dose and had similar concerns about lower counts. The retest in Feb may not give you the results you want as it may take a while for a dose reduction to show in your counts, try not to worry in the meantime, if I could change one thing about the last 12 years with my PV is to not spent so much time unnecessarily worrying about things that proved to be just fine.

[Pat032018]

Thanks Ainslie for the statements to not worry so much about it. Yes, I was diagnosed in 2018 and have been asymptomatic for most of the time. I started Besremi last year but was not on any medication prior to it (only venesections).

[william-Indo]

It is time for your MPN doc to adjustment the dose of Bersemi

[Pat032018 in reply to william-Indo]

Yes, the MPN specialist agreed/advised to have the dose reduced from 150 to 100 mcg

[Wyebird]

hi how often were you having FBCs? Maybe it’s a silver lining and it’s because you need to lower your dose.

[Pat032018 in reply to Wyebird]

I agree that those lower readings coud be a silver lining - maybe a prompt for lower dose.

I have monthly CBC testing.

[Wyebird in reply to Pat032018]

do keep us all posted

[Pat032018 in reply to Wyebird]

Will do.

[Manouche]

I’ve got a very similar low blood count for almost 2 years. I wouldn’t call it a bad news. Quite the opposite. My haem didn’t want to change the dose even though my HCT is at 36, platelets 180, hemoglobin 12, etc… There’s no risk to keep a below « normal » blood count (within a certain limit of course). As long as you feel confortable with a « high » dose, don’t change it. It could even prove to be more efficient against the JAK2 allele burden. I believe that’s a possible explanation for my good jak2 molecular response to interferon ( from 83.8% to 3.9 % in 3 years).

[Pat032018 in reply to Manouche]

Thanks for the advice Manouche! However, the haem had already indicated to lower the dose from 150 to 100 mcg and I am a good follower so as to keep good relationship with my doctor. It was nice to hear that low readings like what I had was not that bad of a news!

[Manouche]

Your haem has done the right thing. His job is all about tuning your haematological engine. The aim is first to make sure the blood count is stable and you’re responding well to interferon which is brilliant.

[Pat032018 in reply to Manouche]

Thanks Manouche. I agree that my aim is to get the CBC counts within range - and any incidental molecular benefit is a bonus.