I am 50yo diagnosed with PV/JAK2+ since 2018. I went through HU and then Jakafi before MPN specialist at Johns Hopkins recommended switching to Besremi for longer term complete blood response.
I started Besremi titration Dec 21, 2022 at 100mcg. I have been increasing 50mcg every 2 weeks after CBC checks. I am currently at 350mcg however my last CBC had PLT at 1209. Now I am starting to get daily headaches…
Questions for those on Besremi -
1) I see many people on Besremi (or even PEG) but at much lower doses. For those folks - did you ever go though higher dosages during initial titration and then lowered down to your maintenance dosage?
2) My PLT were not controlled when I switched from Jakifi to Besremi so I am assuming it is going to take awhile for thr PLT to come down. For anyone on Besremi - when you started initial titration phase - where your PLT already controlled or were they high like mine? I am just wondering if those who have always been on a lower dosage were able to do that because their starting PLT were lower.
3) What side effects from Besremi did you encounter? I am not sure if my recent headaches are from increased Besremi dosage or from PLT levels being so high.
hunter5582 - your mantra of this being a marathon and not a sprint are ringing in my ears…. I am just frustrated with the slow PLT response.
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RyanCB
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Besremi is indeed a marathon. It takes time to do its thing. We all respond differently and at different rates. If your PLTs were not well controlled before beginning Besremi, it seems likely that it would take some time to reach your treatment goal.
I was fortunate in having a rapid response when I initiated treatment with Pegasys 45 mcg. My PLT had ben cycling from the 700s - 900s. I was in the mid 700s when I started on PEG. It took about 8 weeks to get down into the 400s. PLT stabilized in the mid-high 300s and stayed there when I switched to Besremi. I have gradually increased the Besremi dose from 100mcg to 150mcg. I may need to go up again as the erythrocytosis picked up as my iron levels improved. Hopefully, tolerance will not be an issue.
I recently did a phlebotomy, the first in 2.5 years, as we could not increase the Besremi dose from 150mcg at that time. My liver function tests were running at almost 3X upper limit of normal. The LFTs have since returned to normal. The other adverse effects have been mild lymphopenia, borderline neutropenia, and itching/rashes. The latter are well controlled with Claritin. I also started on Milk Thistle extract to support liver function as recommended by my Integrative medicine doc.
Given the timing of when the headaches began, I would be suspicious of a Besremi adverse effect. That would be an important issue to review with the MPN Specialist. It definitely impacts dose titration.
I’m currently on Besremi 500mcg and still can’t get my platelets to stay in normal range. My platelets were 900k , it’s been one year on Besremi. I’m being told it takes awhile to work, but now my liver enzymes are increasing very high , I don’t get headaches but lots of stomach issues. I hope you have better luck than me.
thanks for sharing. I am trying to be patient with Besremi but it is tough. I am praying it will work as the long term benefits of complete blood control and potentially stopping progression into myleofibrosis are worth it. It is just sort of like playing the long game in the stock market…. I was getting some quick returns on Jakafi but longer term interferons seem like a better option. Day by day I guess. Cheers.
I had two doses of Besremi before I had labs. I had a 50mcg and 100mcg. My platelets were 1.6 and they dropped to 1.1. It also dropped my wbcs to normal range. My HCT has always responded well to phlebotomy for months like 1 will keep me controlled for 5-6 mos. My MD Anderson doctor said once you get to 150 mcg he only recommends going up in dose once a month as it is a long acting drug. So will be on 150mcg for next two doses then will get labs. So far no side effects. And my MDA doc said you don’t need tight platelet control. Just under a million. Maybe your doctor should give it longer before going up. I can’t really say too much because I just started. I hope this helps.
There seems to be such a wide variance on titration dosages. My MPN specialist at Johns Hopkins is following the standard recommendation from the manufacturer which is starting at 100mcg and increasing by 50mcg every 2 weeks. besremihcp.com/dosing/. My hematacrit and WBC are ok. It is just my PLT that has stayed high >1000 for months. What is also strange is that my PLT has dipped down into 800s twice in the past two months only to go back up. My hematologist added Jakafi 25mg back in awhile back to try to help bring it back down but it has t helped. When I was on Jakafi the levels only started coming down when I was at 40mg/day. This week I actually stopped taking Jakafi due to oral issues (extreme rawness in lips and sensitivity to spicy/hot food). I will see what my PLT levels are this Friday.
My doctor basically said you can prescribe this drug many ways. Not necessarily a wrong or right way. Just said be patient and may take a year. It is all up to your doctors experience with the drug.
Good Morning RyanCB, I recently diagnosed and just started Besremi from Specialist at Moffitt in Tampa. He stated would take six months. I have been one 100mcg weekly for 2 months. I go back this week. Plan to post update. My platelets 700-800 prior. I have been suffering headaches but have really forced myself to hydrate (above and beyond normal). I do love this forum to have a glimpse of other people’s journey. Best of Luck my friend. Thanks for the post.
Thanks for sharing. See my comment above and thr wide range of dosing strategies being recommended by doctors. I am following the manufacturer’s recommendation- besremihcp.com/dosing/.
yes someone posted that in a different thread. This is newer research and I am guessing the manufacturer was recommending starting on the lower dosage due to black box warnings. There is a loooooooong list of severe side effects including death. My hematologist made me double confirm I wanted to start this treatment before we began.
Hello, RyanCB. Great questions here, and I sure hope your Besremi experience is good for the reasons you stated — the longer term potential of slowing disease progression. I’ve been on Besremi since mid-June 2022.
1) Titration: My doctor, an MPN specialist, took an aggressive approach on titration. I started at 100, and he increased it by 50 every two weeks. He said he wanted to do this as long as I could tolerate it, and then we’d back it down to the level needed to keep things under control. I’ve been at 500 since mid-October, and now he’s monitoring things with the goal of backing it down. Like Hunter has said, this is a marathon; and even my aggressive doctor wants to see me on less interferon.
2) The drug does take a while to get things under control. My platelets have historically run in the 700-800 range. It took about 4.5 months to get them into the normal range, but I feel like the drug started making a difference on the platelets after 2 months (when I got to 250 and above on the dose). That’s when they dropped into the 600s for the first time in many years. (The only part of my CBC that’s being stubborn now is the hematocrit. For a few months, it was hovering just below 45, which is where my doctor wants it. Then it went to 47, so I had a phlebotomy. It was my first one in 6 months, and I used to get them every 2-3 months.)
3) I’ve tolerated it pretty well. I’ve experienced some of the mood stuff, but it’s been manageable. I’ve had a little nausea now and then (use Zofran occasionally) and some skin dryness. Really nothing that’s made me want to stop (given the potential for long term benefits).
Best of luck to you. This is a great place for information,.
thanks for feedback. Looks like we are on similar dosing strategies. I am hoping these headaches subside or we will have to maintain or even decrease slightly to remedy.
My local hema/onc doc also has me going up the Besremi ladder by 50 mcg every two weeks, but I'm only on 200 mcg so far. My platelets are over a million and hematocrit being kept down by intermittent phlebotomies. This week I had more reaction, I think, to the drug, as I was emotionally drained and had trouble generating energy for things I'd looked forward to. (Why does Besremi affect mood?)
This tiredness and ennui might also be due to awful insomnia, but I have not read that insomnia can be pinned on Besremi or PV! I will probably go through with a night at the sleep apnea clinic, though I really doubt that is the cause of red cell numbers. I know that sleep is like a weak link for some of us--must keep food, drink, exercise, relaxation and so forth well balanced. I'm glad to read all the stories above; I don't want to have false hopes of a fast reaction.
I have ET. Plt was at 650. I started at 100mcg Besremi last mid October. I went up to 150mcg begin Feb. I had reduced my Anagrelide by 1/2 and the heart palpitations, fatigue, brain fog was better but the PLTs remained stubborn at 850! 2 woks later I made a mistake and took 200mcg instead. I got dermatitis (?) for the first time in my life. Maybe an allergic reaction? 3 days of antihistamines helped. Spent 3 days in bed exhausted! I haven’t been able to pinpoint another cause.
I went back down to 150mcg last Monday and felt good. The skin problem is back since yesterday. Blood test coming this week. Apparently, Besremi takes up to 6 months to stabilize. I’m wondering if my detoxing my liver and metals was reducing the effectiveness of Besremi, but my doctor said no. I can’t find any info on this, so I stopped the detoxing a month ago. I’ll know more on Friday. Patience…..patience….. oof
My doctor has patients on 500mcg.
by the way, Besremi is produced just 6km from my home in Vienna Austria! I find that amusing it’s been available in Europe for more than 3 years already, in the States a believe just over a year.
Hi Anag,I was not aware that Besremi is manufactured in Austria. My understanding was that AOP Orphan just packages the ropeginterferon sent by Pharma Essential, which is produced in Taiwan. The only manufacturing facilities are in Taiwan and this may be a problem for the MPN pacient if a a geopolitical crisis arises in Taiwan that may interrupt the supply chain.
I tried to check into that. It does seem that it comes from Taiwan and that makes me extremely nervous. If there’s political unrest, which could break out anytime, there will probably be a shortage of products!! My husband went for 9 months without proper meds because there was not enough being produced. His health suffered. 😕 I’m contacting the company about this. They actually 2km from my home. I find that so amusing.
I have PV and before starting Besremi my PLT count was around 550. I had infrequent phlebotomies (2-3 times/year). I took it slowly with inreasing Besremi and I am fortunate that both HCT and PLT are now within normal range. PLT were the first to respond to Besremi, HCT last. I believe this has to do with the much shorter half-life of platelets compared to red blood cells. I am currently at 130ug Besremi every 14-17days. I have been having chronic headaches and decreased mood. Both improved significantly after starting Lexapro, an SSRI antidepressant some 3 months ago. I have been at the current dose level for ca. 7 months now. My Platelets are at 190, HCT=43.7, Neutrophils and WBC are below the lower limit at 1.5 and 2.7, respectively. I probably would give it some more time and as Hunter suggested discuss any side effects with your doctor. I opted for approaching the efficacious dose slowly as I didn't want to discontinue Besremi due to potential intolerable side effects at elevated doses. Wishing you well and hope your blood values will improve as you continue with Besremi.
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