On Besremi 100mcgs every 2 weeks.
My numbers aren’t terrible but are going up. I was so happy but now I don’t know. Thoughts?
Should I request a phlebotomy or wait to see what my HCT is in 2 weeks? At what point do they decide to up the Besremi? Is this what happens?
You are doing good for awhile but our bodies are always trying to reach abnormal numbers? Medicine always having to increase? I hope not.
The answer is a bit complex and a bit of "it depends." Bear in mind that while we use HCT to monitor, it is a fuzzy measure. That is why some docs prefer to use HGB to monitor. To better understand your CBC results and PV status, best to talk to your MPN Specialist.
You may recall that my HCT recently jumped up to 47.7. The MPN specialist and my regular hematologist were not particularly concerned and recommend no immediate change. A couple weeks later, the HCT dropped to 44.4 on its own. It really is the trend that matters. We should not take any one CBC out of context of the overall trend. There are a number of factors that can impact HCT beside erythrocytosis.
Something that I assume at this point is that as we allow my iron levels to rise (no phlebotomies) that my erythropoiesis will increase. Without intervention, with PV our bodies want to use the available iron to make more RBCs. That is just the nature of PV. My goal is to use the Besremi at a tolerable dose to manage the PV and maintain quality of life. I hope to avoid using phlebotomy since I feel better with my iron levels higher. Time will tell as the PV juggling act moves on.
Thank you for responding.
agree completely. I’m a jumper. My bloods, especially my thrombocytes can be anywhere from 350 to 900. I monitor every month and go up and down on my treatment. Looking at the average, I’ve managed to stop the progress of my illness and have on the average, reduced this illness. ET. Important is keep any and ALL inflammation in my body down. No chemicals in my food, home or on my body. Stress and trauma work are helping incredibly. I feel really well at 57 than I did at 42. So don’t worry, be happy.
I’m studying up to make a switch to interferon. After 5 years of anlagrelide (it doesn’t like my heart) time for a change. I finally found an MPN specialist that I trust there are in 5 in Austria!
let us know how you are doing
Anag
My Specialist did want me to have a phlebotomy today. 10th Besremi shot later this afternoon. It’s a disease managing day today. So grateful that managing is an option. 😀
Do you have your RBC and MCV results? These make up the HCT result and are good trends to follow also. My Dr is one as Hunter notes that considers Hb to be more accurate trend to follow. Your Hb is not increasing so much. Seems worth discussing with your Dr if HCT stays high.
If you do need more dose, you would be increasing from a fairly low one. I'm currently at 140 but of course we're all different. Are your WBCs ok lately? This can sometimes limit the dose.
Are you otherwise feeling ok?
I’m feeling fine physically. I’ve had some emotional upset over the past month- but I’m ok. 👍
Thank you for responding and trying to help me understand.
It seems your leukocytes are ok from these numbers, is that right?
If so good thing is you're not limited in Bes dose by WBC being too low.
With your MCV being low it gives more room with higher RBC for holding HCT levels. (HCT is MCV X RBC) I can't say what medical significance that has though, just gives us some context.
Wishing you more relaxing times.
Hi, for the hematologists that use Hgb to monitor PV, what is the level that they think is optimal for PV patients. I have heard the numbers for Hct (<45 for males) but do not remember a value for Hgb. Thanks, continued best to you.
I asked that exact question of my MPN expert. He said there isn't a published value since the large relevant studies looked at only HCT. So while Hb is a better number we don't have data how to best use it. So while he mostly watches Hb we end up using HCT also.
He notes that HCT is only a calculated value, (I found that is MCVxRBC). In the 70's it was actually measured by hand. So I like to look at MCV and RBC when checking HCT. Hb is directly measured.
This does point to watching for changes in Hb. In my interpretation, if HCT goes slightly high but Hb changes little one might feel less urgency on the HCT number. But other Drs will have different outlooks.
Thanks. I will try to remember to ask my specialist when I see him in Dec. if there is a specific number to use as goal.
He pretty much said the same as your expert. Said he prefers Hgb but seems to always goes by Hct. He said that the main thing about PV is keeping the Hct <45% for men, studies have proved that. Best.
Well… my doctor did want a phlebotomy today. I get that done at my old hematologist’s office in my town, not Chapel Hill. They always give a finger stick before a phlebotomy. Today numbers are down, hopefully that’s an accurate reading and no phlebotomy was needed. I’m not complaining just never know about them here. 🤦♀️ Does anyone ever get a reading and the doctors hold off on the Besremi for a couple of weeks? I’m taking a shot this afternoon. It is a balancing act indeeed.
My Dr has not discussed short term changes in Bes to address any CBCs. Since IFN tends to act slow it would seem hard to make those quick adjustments. Maybe others have info here.
Interesting on your ok HCT but high RBC. The low MCV is keeping the HCT down even with the high RBC. I hope eventually to understand this area better.
how long you have been on Bes maybe a factor?, I know with Peg it can take some people months or up to two years to get complete Hct control, in the meantime most keep venisecting until the Bes at this dose or increased dose kicks in completely, most US experts would like to see a female Hct around 42-43 , it also doesn’t show dates of the blood tests and I could not see MCV as referred to by EP guy
I suffered the same effect. I decided to wait althought my hemo wanted a phlebotomie. The time gave my the reason. Everything is fine until now. I have been on Besremi for 15 months. Waiting for a new gene test. Nervous.
Hi, please let us know how you new gene test comes out. I am thinking of asking for another gene test next month. I tested positive for Jak2 and DNMT3A 5 years ago. Good luck.
I’ve been on Besremi since June. My platelets and WBCs are coming down, but it seems like the HCT is being a little slower to react. It’s going up more slowly for sure, so the Bes seems to be starting to make a difference. I’ve had to have one phlebotomy since being on Besremi, and it wouldn’t surprise me if I need another at some point. My MPN specialist took the approach of increasing my Besremi dose by 50 every two weeks, as long as I was tolerating it. I have been, and my last dose was 500. It wouldn’t surprise me if he takes it back down once everything is in line. It’s definitely a juggling act, so hang in there. Everything I read suggests that it can take time.
me too. I'm on pegasys 90mg every week. Been on for about 6 months. Whilst hct rising much more slowly, doc not happy to increase dose until hct has reached 0.45. But I feel rotten after 0.42, so not sure what to do.
Persistent symptoms even when HCT is OK?
HCT Jumped 3%. 
ET with high HCT?
