I am about to start Besremi. Just looking for some reassurance. I am 40 year old working mom. I was diagnosed over a year ago. My HCT has been great, 8 mos in between my last phlebotomy, but my PLTs are crazy high and my wbcs are coming up. Just hoping someone can tell me what to expect.
Besremi : I am about to start Besremi. Just... - MPN Voice
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KLCTJC
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Have you been on any other meds? What is your PLT?
I'm on Bes and getting good response, with some added fatigue and possible eye issues. But it's better experience than HU was.
From posts here, Bes sometimes is slow or resistant on the HCT reductions, while good, or too good, on the WBC reductions. PLT seems ok usually response if not right away. Don't expect instant results, it can take a while. These are just my qualitative take on various posts.
Since you don't need much on HCT that could be a good starting point. Don't start too high dose, or increase it too fast unless Dr has a good reason to. The trials for it dosed enough to get CHR (blood numbers all in range) but not more than that. They gave it about a year to all stabilize.
The needle is very small, and I don't even feel it going in.
I haven’t taken anything. My PLTs last month were 1.6 million, likely responsive to the phlebotomy I had 1 month before. They have been between 1 million and 1.5 million almost the entire time. My MD Anderson doc didn’t care too much about them, but my wbcs have increased in the last 6mos and were 14.5 a month ago. So I wasn’t surprised when he said it was time. I am a Derm PA so I am familiar with injectable drugs of all kinds, but it is different when it comes to yourself! My husband is a PA as well and will give me the drug at home. My doc is recommending starting low and slow. He said it may take a year and my labs don’t have to be perfect. Wants wbcs normal and platelets under a million. I just hope I have a good experience and I am able to live my life. I run a busy practice and I have a 4 year old. Just hoping this helps me live a long happy life!
MDA is a top clinic, so you should be in good hands. Are you with one of their MPN experts?
That is a high PLT, but we've seen here many Drs consider plt less critical than HCT; MDA is not worried about that level in your case. Did they say why your WBC changed like that?
I like their plan for low and slow.
I am seeing a MPN specialist and I have a local doctor. I don’t live that far from Houston so my two doctors are working together. This has been great because my local doctor has never treated a young person with PV. My doctor did say why my wbcs started going up. Just made it sound like it was something that happens. But it was why he wanted to start treatment. I do think Besremi being available was another reason he decided to treat. My wbcs had always been high normal or at 11, then they went up to 13 for 3 mos, then 14.5 for 2 mos. I really appreciate all of your help
For what it's worth, the reading i have been doing says that elevated WBC #'s may contribute to having thrombosis even more than RBC and Platelet #'s, so it sounds like he is reacting well to your change.
Also FWIW, [and from what I have been reading] - not only is the progression to frank leukocytosis part of the natural history of PV, although it also sounds like you may have a primarily ET variant of MPN, Besremi is our best hope for disease remission instead of just symptom control.
I [a Family Practice PA with multiple other subspecialty experiences, now working in Corrections] had elevated H&H's [tx w/ donations to the blood bank via double reds] for about a decade prior to developing frank erythrocytosis per my pre-physical yearly routine labs in 4/22.
That generated an immediate referral to my general Heme/Onc MD in 5/22, where the initial CBC revealed hyperpoesis across all my cell lines [RBC/WBC/Plts] and + JAK2 mutation.
That MD immediately started me on Hydroxyurea and weekly phlebotomies, even before the JAK2 result came back. I'm on a low dose [500 mg/day] but have had daily headaches, balance issues, dyspepsia, and skin healing problems since day 1 of HU.
So that [in addition to the worse long-term side-effects of HU, and the hope of achieving minimal residual disease [CHR and Molecular response] is why I'm trying to get my MD to prescribe Besremi.
Sorry for such a long diversion, but it's my way of saying that I think it may be a good choice for you long term, if you tolerate it well.
Also: hematologyadvisor.com/home/...
I am a PA too. I worked in family practice at the start of my career and been in dermatology for over 9 years. After hearing others talk about how well they are tolerating Besremi I agree it is the best choice for me. And I have read that about the wbcs as well. Due to my age I would prefer to avoid HU. Plus, it doesn’t even have a chance to possibly stop progression. The phlebotomies have never bothered me, but that could be partly due to that I haven’t had to have them frequently. I called my local oncologist OV again today to check on the status. I am just ready to be moving in a positive direction and to see some better control over my numbers. My biggest issue was being afraid of taking something that would make me feel horrible when I have pretty much had no symptoms of PV after I got diagnosed. But everything I have heard so far doesn’t sound bad. And hoping because I am young, have no other health issues and I work out 2-3 days a week this will help. I am just planning on living life and having a positive outlook for once since this started! Being in Derm the new “hot” drugs are all Jak inhibitors. And since I have been diagnosed I have been thinking to myself why couldn’t they come out with something to fix PV. I know about Jakafi and that particular drug had crossed over into Derm as a topical! So, when I discovered Besremi, I knew it was at least a HUGE start towards an answer. Praying it will be the answer to mine and my families prayers!
Hi KLCTJC,
I know- I read your profile page, otherwise I mightn't have included my info- aside from my screen name, I try to keep a low profile re: my professional life- I'm not on fakebook or any other soc. media- except Medscape and Doximity- but I guess those are more like medical sites anyway.
Anyway, best wishes for your ongoing medical experience.
I just recently saw the first information about Jakafi as a topical- but I didn't know that JAK2-inhibition was a derm thing too.
I'm an old geezer-[ish] so I just started this corrections position [in 3/20] as a pre-retirement gig to sock away some funds and hopefully get a state pension and medical coverage- then the PV dx popped up- which wasn't totally a surprise.
But it was only then after I was diagnosed that i started reading and found out what a huge difference the current understanding is from my PA school hematology training was in the late 90's- when phlebotomy was pretty much the only standard therapy for it...
😱
You're awfully young [not the youngest I've seen here though] for this diagnosis- do you have any family history that might've contributed to that?
It may be somewhat reassuring that the guidelines all say that the treatments other than HU [e.g., IF's] are better for younger-onset patients.
Although as an older than 60 y/o, and therefore higher-risk, despite not having had any previous thrombosis patient, my thought was, that was because in us without so many years to live, they don't care about causing secondary skin Ca, transformation to leukemia, or progression to MF?
😏
I also have a low profile. I do not do any social media. This is actually the first social media thing I have ever done.
No family history that I know of. Just the lucky one!
And I was in PA school from 05-08 and phlebotomy was all they mentioned then as well. In fact, Jak was never even mentioned to my knowledge on anything.
Well, just got the news insurance denied Besremi which is no surprise to me. I deal in injectable drugs for psoriasis and atopic dermatitis daily. So many require appeals. They denied me due to my age. So, now I get to go through the appeals process! I do think it will be approved just have to jump through the hoops!
Best of luck- I too have spent many hours on the phone appealing for approvals- you'll get it [eventually]!
In solidarity.
At 40 you're young; this is traditionally where INF was Rx, before Besremi showed it works for old guys too. You should be able to show ins co the historical use in younger patients to an advantage
I think it will get approved. Just have to go through the process. I am so used to this at work with ordering injectables for patients. Just stinks because they were supposed to be working on it over 3 weeks ago and local doc just went on vacation for 2 weeks! I am just ready to get the show on the road, but insurance is a process.
I was denied initially also; but the doctor appealed for me without my input and it was a success. I did not need to remind the hematologist that Besremi is the only first line drug approved for PV.
Given what you describe, Besremi is a good choice for cytoreduction. I actually started on a low dose of Pegasys, which dropped my PLT by 200+ in just 8 weeks. I later switched to Besremi when it was approved. It has by far been the most effective treatment option for my PV variant, which includes both erythrocytosis and thrombocytosis. It has also been the easiest to tolerate. I am HU-intolerant. I found the side effects from the phlebotomy-induced iron deficiency to be worse than the PV symptoms. I feel much better now using Besremi to manage the PV.
The only side effects I have had from Besremi are some itching and mild leukopenia. All WBCs have been decreased, particularly lymphocytes. Neutrophils have decreased to a lesser degree. The itching has been well controlled by Claritin, so is not a big deal.
Starting on the interferons was a very good choice for me. I only wish I had not waited as long as I did to start.
All the best to you moving forward.
That puts me at ease. Thank you so much!! I am hoping to get started very soon just waiting on approval. I am looking forward to getting this under better control! Thanks again
Good luck and keep us posted please
It sounds like you’re in good hands with MD Anderson. Dr. Verstovsek is a leading MPN specialist, so whether you’re seeing him or one of his colleagues, that’s a great place to be.
I’m no expert, but have been reading a lot since going on a drug myself when I turned 60 a few months ago. Dr. V and my local doctor both recommended Besremi, given its ability to manage the counts AND possibly stop disease progression. Since I was diagnosed many years ago, my disease had progressed some and I desperately wanted to get on Besremi to have a chance of stopping that from going further.
It took some work to get the insurance company to approve it, and then I started on it about two months ago. I’ve tolerated it well so far — so far, so good anyway. The only thing I’ve noticed is some fatigue and one bout with mild nausea (which a Zofran took care of quickly). I started at 100 and went up 50 each dose. The doctor said to go to 250 tomorrow. I’m a little anxious about that, but I’m going to give it a go.
Everyone is different, but given its potential to stop disease progression and your age, Besremi seems like a great place to start. I wish you good luck with your journey!
He is my doctor! He has really been reassuring over my journey. He has reassured me that this is all about management. I am just ready to get started since my wbcs have changed. And it is reassuring to hear other people are tolerating Besremi well. Thank you! I knew when I first saw the drug it was in my future since it has potential to stop the progression. I am just hoping I tolerate it as well as everyone else has. Dr. V made it sound like I would do great. So, fingers crossed he is right! Thanks again!
It seems for you Dr V is proposing a slow titration of Bes dose. For GardNerd it is more aggressive. Has Dr V said why he wants the slower one? I assume it's our individual differences, but we can learn here if we can understand more.
He didnt’ say, but I am little. I am 5’2, 112lbs. Not sure if it has to do with my size. And I asked him if this could put you in an “operational remission” and he said yes. He did express that progression is unpredictable. My husband was pretty blunt with him at the last OV to try and make me feel better. And he has told me from the beginning that I can live a normal life span and he feels I will do well. I don’t know if this answers your question, but I sent him an email today to recheck I heard him correctly on how to titrate mine. He told me start at 50mg, go up every 2 weeks til I hit 150mg and then only increase once monthly if needed.
We've had posts about weight vs INF dose. The current INFs (Bes, PEG) do not seem weight dependent (but I'm also small for a guy at 130lbs) An earlier INF was dosed on weight. So your third dose will be 150.
I think Dr V is evolving on his thinking for Bes, there is a recent report on the 6+ year results for the Besremi trial that may have influenced him.
I love that "if needed" part. How does he define "needed"? I assume by blood counts.
It's hard to measure the dose, but I go for increments of about 20.
That's wonderful your husband is kicking it around for you. Can you say what the dispute was in this case?
That is correct, my third dose would be 150mg. When I first went to MD Anderson he drew some crazy panel that is only available to MD Anderson and then called me personally and told me that he didn’t see any markers that would lead him to believe the course of my disease would be bad. He didn’t go into it, he just told me he thought I would do well. I can’t access that panel, but I wouldn’t likely know what it would mean. I just know it was $20,000, thankfully my insurance covered it.
He said that he would love it if all of my numbers were normal, but he would be ok with my platelets just being below a million. We will just have to see. I hope I respond really well, but he told me it could take a year. My HCT has responded so well from the beginning. Hoping everything just falls in line once I get started, even if it takes a year. I just want to see it moving in a positive way.
One thing that I didn’t mention before that I really believe is what was the primary reason things went nuts is in August 2021, it had been 5mos since my previous phlebotomy and I finally needed one. My HCT was 47. I went to my local doc and I know everyone there, they put me in the back to have my treatment. Well, she thought it was flowing slow and they left me back there by myself. And I tried to yell for help, but they didn’t make it in time and I passed out. They took off 1000ml at one time. It was really hard for me to recover, they gave me 1/2 bag of saline and I was short of breath the next day and had to go back for a liter. After that nothing has done well. My labs were great all last summer and my platelets had dropped to a million prior to this happening. And things just haven’t been right since. It did take 8mos to need another phlebotomy, but I believe this has definitely affected me.
And my poor husband has had to deal with his anxious wife annoying him for almost 2 years! Since we are both medical, it is a blessing and a curse. If I am not worrying about one thing, I am worrying about something else. So, my husband wanted it on the record that I can live a normal life with this disease and just flat out asked him. The last visit was the first time he could come with me due to covid restrictions. Dr. V told me this on my first visit, but I still struggle with anxiety from this. He told me that he sees lots of young people with this. He basically said he feels like we seek him out!
From that description and price I think you got NGS (nexgen sequencing) I looks for 50-100+ other mutations. MDA likely looks for even more than that. I had that also. But MDA likely has insights to the results that others don't.
You probably had no other mutations based on their response. My report said this explicitly, you might find that somewhere in the report.
That's a great HCT response, we've seen here on INF it can be slow.
That's terrible they were so negligent on your phlb. Was that at MDA? I understand your husband's reaction.
Reply to GardNerd
Has Dr V said Bes is likely to help with progression? Another of his patients on the forum has said Dr V remains unconvinced of the benefit for reducing allele (MR) which progression should be one.
Are you getting or approaching CHR (blood counts in range) on Bes yet? You're on an aggressive titration which also seems familiar from at least one other patient of Dr V. I'm at 120 and feel 100-120 is best for me as I felt better at that level and have CHR low as 75, but my Dr wants at least 200.
I posted before reports closely correlating CHR to MR, but Drs don't know or seem to care about this.
The Ropeg (Besremi) trial used a dose to reach CHR but not more than that; there is an inconsistency in this vs our Drs' plans. I'm always interested to know about Dr V's thinking.
I’ve seen Dr. V just once for a consultation, but he’s not my treating Dr (too far away). So he and I haven’t had an in depth conversation about his thoughts on treatment. Following my one visit, he felt Besremi would be worth trying, and my treating physician agreed. My blood counts aren’t in range yet, since I’ve only had three injections so far. But hopefully that will change in another few weeks or so.
Remind me the difference between CHR and MR? I’m definitely in the learning phase of the treatments. I just lived my life and didn’t worry about it — with phlebotomies and aspirin — for about 16 years. I wish I’d learned more sooner, because I probably would have asked my Dr about taking Pegasys several years ago.
I think CHR is just complete hematological response. MR is molecular response. The thought is Besremi has the potential to put this in full remission if it completely suppresses the JAK2 gene.
I was hoping I would be able to avoid a medication for longer, but he recommends we start it because of my wbcs. He is definitely directing my care, but local doc will be ordering and monitoring it. I am only 3 hours from Houston. I am grateful for him because my sweet local doc is clueless with young people. Dr. V has had multiple conversations with him. And I go back in January to MDA
KLCTJC here explained CHR. It generally refers to getting the three main counts we care about in a good range. For HCT in the US it's 45 max for male, 43 max for female. PLT is less well established, 450 is the most common limit, but 600 is used by some, and as KLCTJC notes, "My MD Anderson doc didn’t care too much about them" with Dr maybe ok with 1000. WBC is about 10-11,000. With any of these a rapid change either way and various details are important.
MR is how much your mutations go down, for example a Jak2 allele burden of 50% could go down to 10% (just an example) while taking INF.(PEG, Besremi)
A third item we care about is marrow histology, the shape and types of cells in the marrow. This can change over time and sometimes improves on INF.
It's never too late to start INF if Dr agrees.
Here is a plot that shows the mean reduction of allele after 5-6 years of Besremi. Note HU was less effective. But each individual person will likely see different results.
Ropeg5+Years
Thank you both for this additional information. My WBCs and PLTs aren’t coming down yet (WBC around 17-18 and PLTs generally run 700-800. HCT is in a good place, but that could partly be due to a phlebotomy not long before staring Bes.
EPGuy - Are there any downsides to titrating up rather quickly, as long as it’s tolerated? I noticed your comment about rapid changes. Also, can they measure the allele burden without doing a BMT?
Thanks to you both and well wishes!
I wouldn’t think their would be an issue. It is how the drug is supposed to be dosed according to drug company. I do think that it may take longer to respond than you would expect and if you give it some time between increases you may find that the lower dose will work if they give it time. That is why I am assuming Dr. V recommended only increasing once monthly after I reached 150mg. From what I have seen or read Besremi can continue to work the longer you are on it. So, it may be a conversation you could have with your local doc. And if you have seen Dr V you can send him an email and get his opinion. He may say just keep going or say only increase once monthly. I have already told my local doc I will be following Dr. V’s instructions, not what is recommended on the package insert. And I emailed Dr. V yesterday just to clarify I heard him correctly. I think you will be ok either way.
That makes sense that your HCT was responding to the phleb, it's otherwise unusual to see HCT respond so fast vs the other counts on INF. But "everyone is different".
Two months is very short for INF, so you can most probably look fwd to good progress over time.
The titration plan is for you and Dr to decide based on your particular conditions. Here is the actual titration that was used in the Ropeg (Besremi) long term trial:
<<every two weeks, the ropeginterferon alfa-2b ... dose level intervals were determined in 50 µg steps; until (1) the individual, (disease response) maintenance dose was achieved, or (2) if no further dose level was available, the dose remained in the highest dose level (i.e. 500 µg ropeginterferon alfa-2b). >>
Disease response was:
<< Complete hematological response- Hematocrit < 45% (females usually 43) without phlebotomy (at least 3 months since last phlebotomy),- Platelet count < 400 x 109/L,- Leukocyte count < 10 x 109/L, and - Normal spleen size (≤ 12 cm females, ≤ 13 cm males);>>
According to that, we should stop increasing if/when we get CHR or get maxed out on the dose. But as we see in this thread, esp PLT levels are mushy among the experts so maybe your Dr won't push as hard on that. WBC has been shown to be important for prognosis in some PV studies so it's worth attention, as PhysAssist noted above in the thread.
Regarding rapid changes, I meant disease conditions, adverse reactions to meds, blood counts etc. Any medical condition that changes alot or suddenly is worth close attention. In my case I've had some unusual eye things that happened suddenly since starting Bes.
I have a bias to slower from my personal experience. I have responded well to low doses as I noted above while I get troubles with each increase. My Dr wants to keep going up even though the trial protocol would have me staying at the low doses. But in your case, Dr wants to get the responses under way, and you're tolerating it ok, so higher doses makes sense to me.
You're getting regular CMP bloods (liver etc) right? This is tracked frequently as INF begins and increases and can define a dose limit for some. The label is ok with up to 3X top normal on some liver values at least for a time.
AB is usually measured from your blood test, although it can be measured by BMB as was mine. Normally they give similar results.
Thank you so much for all of this. It’s so helpful. I see an MPN specialist (one of the doctors on the list that’s shared here frequently) and plan to see Dr. V at MD Anderson annually for a second opinion.
I’ve been getting labs weekly, although he’s going to make that monthly for now. So far, the liver scores have been very stable. I had a routine dental appointment yesterday, and they noted some tissue overgrowth in a small area of my gums. I’m not sure that’s related to the Bes, but it’s new and a listed side effect. I’ll need to up the oral care (I’m now the proud owner of a water pic!) and talk to the MPN specialist about that in a couple weeks.
Re: Marrow Biopsies findings: ...and also Reticulin and Collagen [fibrosis] staining levels- mine were negative as of my [1st] 7/11/22 BM Bx..
That's a great result. Did they also report cellularity?
Great results for me. Hope it is also the same for you! My lab tests since injecting Besremi in Feb 2022 are documented on my page.
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