I'm currently on a 1 month holding pattern of 100 mcg.
I got new bloodwork yesterday. WBC is down to 7 from a high of 15, PLT are 466, the lowest they have been maybe ever since being dx.
But, my HCT was 42.6. Up from 38 three weeks ago. Which means, I'll need a phlebotomy as I keep it at 42 or lower. I think I'm going to wait a few weeks and see if my HCT drops. I'm starting to see my ferritin increase for the first time in 5 years. It was 13!
My nails are growing and not breaking off and I have more energy. Not thrilled if I'm taking Besremi and still need to get phlebotomies, but time will tell.
Side effects: I've had a few days where I felt like a zombie in the afternoons. I have had that before so maybe PV? Or maybe, age-related? Who knows.
The increase in migraine frequency seems to have been abated with Emgality and Nurtec.
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Good progress on the blood counts. I've posted before that some of us on INF may some day add Rusfertide if/when it becomes available to control the HCT.
That sounds like a good plan. I am in pretty much the same boat. My HCT jumped up t0 46% on the last CBC. Checked with the MPN-doc. We decided to give it a bit longer and see if it drops back down with continued 100mcg Besremi. If it does not, then we will have to either increase the Besremi dose or do a phlebotomy. The doc does not want to up the Besremi dose due to the lymphopenia I am already having. I feel so much better with my iron level higher that I may choose to risk it and see what happens. Time will tell on that one.
Glad to hear that the CGRP inhibitors are working. They have really helped me too. I hope more with migraines get a chance to try them,
I don't know much about our diseases except for my own ET. But-- I know what often causes either headaches/migraines and "runny stomachs and that is ACID.
Believe it or not. But when you go through literature or hospital cases or simply daily day natter, you can't miss the facts that diets, moods, reactions and medics -- and diseases, are playing a huge role in the "life of" our pains. And why : When you are angry, worried or irritated you are seldom relaxed (at least if you aren't a pain freak😜)-- and when you are not relaxed, you contract muscles. Most often in head, neck, shoulders and lower arms.
When your muscles are contracted the bloodflow is slowed and the acid in the muscles are high (that is one reason for not eating hunt-stressed game or badly butchered pigs and cattle).
Another thing which causes a rise in acid is 1, the medical treatments we get, itself. 2. when lots of bloodcells are killed -- as in ET patients, there will be a lot of "garbage" in our bodies. Acidic stuff, which we have to get rid of as fast as possible.
Painkillers are most often pure acid bombe themselves. Sadly.
So (sorry for babbling) the contraction of the bloodbanes causes a decreased bloodflow to your head which causes headaches and some migraines .
One way (beside of gymnastics and other ways of muscle manipulation) of lessening these pains is to eat more base-containing food or help it of with base-creating minerals such as "Basica Compact". I won't say it does-- as a rule, but certainly most often it does.
I appreciate your reply. I'm not sure I understood some of it but I think the gist of what you are saying is the emotions, stress, and diet impact headaches and migraines.
I don’t know much about Besremi yet but it is very similar to Pegasys and for some on Pegasys it can can take a year or so before it completely controls Hct, probably worth waiting for though.
The iron and platelet improvement is great news and glad you are feeling better. I just had my fourth dose of Besremi. For comparison my doc is more aggressively increasing dosage in my situation but dosage is subjective of course. I just pushed fourth dose at 300 mcg yesterday per docs instructions after starting at 100 mcg for first two doses and 200 for third. Feeling great relative to my past monthly phlebotomy days and no AEs at present. I have had not prior treatment for my pv in five years prior beyond phlebotomy and aspirin which is apparently relevant to starting dosage for Besremi. I feel much better and no longer have foot and leg cramping presumably due to my iron increase and improved labs from Besremi. Have had one phlebotomy since starting Besremi as hematocrit creeped above 45 to 46. This sounds similar to you and Hunter in term of early hematocrit effect. My hematocrit increase is currently still present but slower than before Besremi. Will get labs next week and will be interested to see effect on hematocrit after doses 3 and 4. As someone else said it could take a while to achieve intended effect on hematocrit per the studies but my doc seems intent on aggressively targeting hematocrit control and thus the dose increase. As others have discussed the issue of dosage increase is still a bit of an educated guess and depends on the patient. I am watching my labs closely as you are, to advocate on my own behalf but so far I am glad I am giving Besremi a try based on quality of life issues alone. I have some doubts regarding the rapid early dosage increase but ultimately have to listen to the experts and the prior studies involved patients getting 500mcgs for most of their treatment with Besremi. Time will tell. Best of luck to you!
Thank you, mfh7 for sharing your current counts and doses. 300mcg! Good for you.
My HEM allows me to decide what I want to do, within reason. As I shared, I'm going to stay at 100mcg and get CBC in two weeks. If HCT has gone up more, I'll increase dose to 125 or? (with that syringe almost impossible to know exactly what you are getting) and wait another two weeks. As Hunter has shared, we all have to do what is best for us. I want the "operational cure" but not at the expense of my QOL or causing serious issues for other parts of my body.
I totally get it. So true about lack of ability to control exact dose with these syringes. I am skeptical regarding my doctor recommended rapid dose increase in 100mcg increments after the first two, but so far my QOL has improved, so sticking with the plan until my labs or the way I feel change that approach at which time I will dial the dose back down. It seems that even with the small sample size of those posting in this group that there is a large variation in how we are responding to Besremi which makes perfect sense given our different ages, diagnosis dates, allele burdens, and other variables. My doc, who is a well credentialed mpn specialist involved in ongoing studies, seems to think that for me the best approach is to gradually increase to 500 mcgs as tolerated since those in the prior studies were on 500 mcgs for five years. This is my first drug for pv which is relevant to dosing. Still it seems counterintuitive to me and that the minimal dose that is still effective would be the preferable path. Maybe if I get to max dose of 500 mcg with full control of hct and labs are good we start to work backwards to find lowest possible dose that works. I plan to ask this question at next visit. Best of luck to you.
Thank you for the reply. Well said. We'll all learn together. I had almost no issues from PV with the exception of mild itching in a small area of my back and occasional fatigue. It was a big decision for me to even start Besremi, but I'm glad I did. I will keep increasing slowly....but as we've all said on this platform, we are in a waiting game to see if it is determined what an ideal dose is. Your MPN doc seems to be well versed on the research. I find it interesting that our HEM's have different opinions on dosing.
I recently posted about INF and effect on WBC vs HCT. My Dr said WBC gets hammered bec it is renewed ~ every 6 hours while Hb is on a weeks or months schedule. So reducing production of WBC has a disproportionate effect vs Hb. So we see the WBC being a tolerance limiting factor.
I've been on Besremi as first drug taken for PV for 4 injections beginning Feb 2022: 50mcg, 75, 100 and 150mcg. Last phlebotomy was Oct 2021. I'm still titrating to find the optimum dose for me, as we all experience a bit differently. From pre-Besremi to 1st week after last dose my blood count changes were:
HCT 45.8 to 41.7 %
RBC 6.3 to 5.5 mill/mcL
Platelets 386 to 241x1000/mcl
White blood cells 12.9 to 5.7 x1000/mcl
Hgb 13.1 to 12.3 g/dL (negative direction)
Ferritin 12 to 30 ng/mL
Iron 23 to 98 mcg/dL
So, pretty quick positive results overall. However, I am going to start next dose today back down to 50mcg and hold there for next month or so until next CBC. The reason for dose reduction is negative reactions of huge flare up of pruritus (none prior to Besremi), significant alopecia (none prior to Besremi) and material increase in retina inflammation of right eye (less sever, but present, prior to Besremi).
I know these doses are materially below clinical trials that demonstrated in some cases remission after a few years, but my personal goal is to maintain normal blood counts at the lowest possible dose given my advanced age and desire to minimize adverse reactions or events.
I've started on 50, just posted a summary, and it had a clear effect. I'll be increasing to 100 next.
Retina is an important area to watch on INF, so lower doses seems reasonable in your case, but also close coordination with an eye Dr and your MPN specialist.
Hi pepper. Thank you for the all the details on what is going on with you. It helps us all. I was telling my family about conversations I've had with this community. Because of this site, we now all "know" people with our rare disease taking a new medication!
We can share our experiences and insights. In turn, that information could help our own HEMs. Mine only has two patients on Besremi so far, so I do share with I learn from our community.
As far as alopecia. I don't have that, but my hair has gotten thinner as I've gotten older.
Thanks for sharing. You and I are essentially at the same stage in terms of Besremi ie we are both at forth dose and this is also my first drug for PV. The increase or onset of pruritis seems to be common with Besremi and I have that as well. Had it before but it’s much more pronounced right now especially as I increase dosage. It’s terrible when I get out of the shower. Other than that I have not had any known AEs even after increasing the fourth dose to 300 mcg per doctors orders. I have only had one set of labs since starting Besremi so am curious as to what my results will be this week especially in terms of hematocrit ie need for future phlebotomy. After just the first two doses my platelets decreased from 1500 to 1100 and I am guessing they are even lower now. Can’t really tell what the effect on hct is yet since it was at 46 after two weeks of Besremi and I had to have a phlebotomy. That didn’t tell us much because it was almost time for next phlebotomy when I started nearemi. I was averaging a phlebotomy once every month and a half before Besremi so that is the personal benchmark I will use to determine effect of Besremi on hct going forward. My initial goal is to eliminate need for phlebotomy with hct control so that my iron level increases back to something resembling normal. I was having all kinds of problems with fatigue and muscle aches with the phlebotomies and speculate that a lot of that was the iron deficiency. I can now exercise again and feel much better. Best of luck with the Besremi and in general.
I’ve done 6 injections already and no change in my platelets(still one million)and this Saturday I’m up to 200mcg. I’m still on three hydroxyureas also. Have you all on Bestemi been alternating injection sites? I’ve been doing the stomach only but trying my thighs now
I've started with stomach, alternating sides. It turns red in a small area for ~ 20 minutes then like nothing happened. I can't see my dosing if I put it into the leg.
I assume you cannot see amount of dose if inject into leg because your syringe contains more than what you want to use at time of injection and positioning prevents clear view of syringe markings. Best if you first eliminate any amount in syringe in excess of what you want to inject, and then inject all of what is left. This way you get the exact dose specific to you and no need to monitor while injecting. Specific advice from PharmEssentia is that each syringe is one time use only. Caution to maintain manufactured potency dictates following their instruction.
Agree on the PE instructions. Interesting that in Euro they have two doses per syringe. Only the needle is changed. So it is known for multi use applications, but I believe FDA considered the Euro device or instructions too complex for us Americans. In fact FDA rejected Bes in March 2021 partly bec of the "administration" instructions.
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