The Besremi journey began today. I did a baseline CBC two days prior to starting. I was surprised to find out that for the first time since starting on PEG, my HCT had floated up to 45.2%. I hindsight, I had been so tied up with taking care of my Mother in the days prior I may have been a bit lower than usual on hydration. RBCs were not particularly higher than recently. I expect it is just an anomaly. HCT always is just an approximation of your status since it is sensitive to changes in plasma volume, I will be sure to keep up the hydration.
The MPN Specialist had recommended that I start at 50mcg. The doc is being conservative about adverse effects since I am the first Besremi patient at Johns Hopkins MPN Clinic. I had decided to follow the Dr. Mesa recommendation for the 45mcg Pegasys to Besremi conversion of 63mcg. Given that my HCT just popped up a bit for whatever reason, I consulted with the MPN Specialist about starting at 100mcg, which is the standard starting doe of Besremi (unless you are switching from HU). We agreed to start at 100mcg and see how it goes. I will be monitoring at 2 week intervals until we see how the conversion goes.
The first injection went off without a hitch. I do not care for the larger 500mcg syringe since dosing at the lower levels is a bit harder to gauge. It is still doable though. I must say it is disheartening to waste 80% of a medication that costs $7,500/dose. I sure hope PharmaEssentia comes up with a better plan soon.
It will be interesting to see how the switch goes. Will stay in touch as the journey unfolds.
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Hope it goes well. I pondering a switch since Pegasys has not prevented me from moving from Grade 1 to Grade 2 fibrosis. Wondering if this is down to my second mutation, TET2.Have you studied the differences between Pegasys and Besremi sufficiently in order to have a view on whether Besremi may be more effective in circumventing the inflammatory impact of TET2 on pathways used by Pegasys
The short answer is that Besremi might have greater efficacy, but that is not clear. What is more likely is that the monopegyated formulation would allow greater tolerance, enabling a higher dose to be used. I think that could make a significant difference. I do not think we will really know until there is a larger number of people using Besremi over time.
Thanks, my problem is that I’ve had to reduce dosage to only 30 mcg every two weeks since haematological overkill (bloods too low) but I’m now to some extent losing the molecular benefits - JAK2 rising.
So I’m hoping that Besremi may work better on a molecular level, especially against TET2
So excited for you and can't wait for you to share your journey with us. Yes, I agree on such a waste! Wish I could share it with you as the cost is unbelievable.
<<The pre-filled pen may not be used more than twice and must be discarded 30 days after the first use, regardless of any medicinal product remaining in the pre-filled pen.>>
So up to 125mcg/dose, UK needs only 6 small syringes per year vs 24 big ones here. We are the same only if the dose is maxed at 500 per two weeks.
As usual just like our cars, US is less efficient.
Exciting! You will probably be one of the very few with ET to get Besremi. Here in Germany it’s only available for PV patients unless part of a study. Please keep us posted.
My official DX is PV from my 1st Dr even as my indications (BMB, pre Dx bloods) are mostly toward ET. My current Dr says I have "MPN" on the continuum and it's not specific. The lower allele % (I'm 14-19) tends to respond less dramatically to INF, but single mutation (Jak2) tends to good response. I hope to have plenty of stories.
I'm also resuming NAC as approved by my Dr, I had good symptom results in a brief test of my own last month, I described in another post. I should get more info there before my switch to Bes, after which I will continue the NAC.
As Hunter says, NAC is being studied right now in an early trial. It has been used since the 1960's for treating Tylenol (Paracetamol) overdose.
There is a mouse study indicating a signif benefit for PV. It goes after many of the bad things that happen in the bodies of MPNs (inflammation and for example it affects "NETosis" and other important things with capital letters)
US FDA is threatening to prohibit it from the supplement market, if so it will require an Rx.
When last checked allele burden October 2020 as 26% on the stand-alone and 29% on the Intelligen Myeloid Panel. MPN Specialist feels the stand-alone was likely more accurate. That was only up 25% the previous year.
It is correct that the only option is a single use 500mcg syringe in the USA. I already voiced concern to PharmaEssentia. Plan to follow up on this as it would be easier to do the lower dosing with a smaller syringe. Also less wasteful. I actually prefer prepping my own syringe from a vial.
Glad to hear the first dose will be at the doc office. It is a good idea to be observed the first time just in case of a very rare more severe reaction. It also helps to get trained if you have never self-injected. It is very easy to do once you know how. I can barely feel it when I inject. Since I was switching from PEG to Besremi, I just chatted with the nurse from the specialty pharmacy. Told her I did not need any further support to be ready to inject. The nurse will call me afterward to see how it went.
I am sure your first injection will be no big deal and the start of a new and successful journey.
It seems there is an actual medical problem with the current syringe if you're having any trouble at all and it is supposed to be used by a typical inexperienced patient for is low as 50mcg. I'm surprised FDA did not require at least a 250 option. It's part of the Co looking for max $ from the US system.
It comes back to my thought of a compounding pharmacy prepping the doses we need for zero waste. One would think they could put it into insulin pens at the prescribed dose, that would be easiest error proof solution for all. At 7+k per there is more than plenty of money for these contortions.
For in-office, I think my Dr also wants the opportunity to learn in person about his 1st Rx of Bes.
Definitely an element of fleecing the American market. It is a shame but it is what it is.
The syringe is marked for 50-100 and up, however it would just be a guess to estimate the Mesa recommendation of 63mcg. Oh well, will just do the best I can.
The syringe is very easy to use, just way bigger than I need. Note that there is no difference in the needle size - just the body of the syringe.
I expect you doc might want to see his first Besremi patient but the first admin of any interferon really should be observed. The more severe reaction like anaphylaxis are very rare but better safe than sorry.
The part I find so appalling is that so much has to be wasted. It really should be available in smaller dose increments. Sometimes it just is what it is.
Hi Hunter. My deepest condolences for your mom! Be well to remember her. I have hypothyroidism. So Besremi is an interferon? I am not sure if it is suitable for me. I am gathering information from you guys and take notes so that I can ask my doctor when I see him.
It can be checked either with a blood draw(easy) or from a bone marrow biopsy BMB. (unpleasant).
All MPN patients should have this number at various times in our MPN journey. Fibrosis is evaluated with the BMB, but cannot normally be seen with a blood draw.
So sorry to hear about your Mum but when mine died a few years ago I was strangely relieved, as I am sure you will be, that she would not be in any more pain. Felt it was the only way I could cope at that sad time.
My Mother will be blessed to pass. She has been through so much in the last several years. It has been progressively worse in the last several months. Sine the hip break on Jan 4 she has just spiraled steadily downhill. One of the last things she was able to say was that she wanted to "sleep in heavenly sleep." She will soon have the chance to reach that peace. It is sad for us but a joy for her. Thanks for the support.
My thoughts are with you, Hunter. I lost my mom two years ago this month and there are so many days I actually take steps to call her....then I remember. Take care,
Thank you, My Mother was blessed to pass at Noon today. Her passing was peaceful and surrounded by family. She now has her wish to "sleep in heavenly sleep." We will one day be reunited. Until then, we have many good memories of better times.
Hunter I'm very glad for your Mother's peaceful departure from this broken world, and glad for the hope you have of being reunited. Also, I'm continually grateful for your informed and thoughtful comments on this platform. You must spend a great deal of time checking information and writing to people. Every note, from everybody here, is a gift and a kindness to us.
So very sorry to hear about your mom, Hunter. I’m glad she died peacefully surrounded by family. My thoughts and prayers go out to you and your family.
I so agree about the waste. Utterly beyond belief. I was horrified when I learned the price here in the UK of my Peg shot, yet that's peanuts against the waste of your Besremi Hunter.When I asked about re-using the syringe, I met with exactly the same response from everybody. From my doctor, from the phlebotomist and from the hospital: "It is not recommended". Then they repeat the instructions to discard the unused portion of the dose. Only when I heard those exact words for the third time did I get it. They were carefully NOT telling me NOT to do it. So I have been injecting myself with 45 mcl of the 90 in the syringe. I then pop the cap back on the needle and put it back in the fridge for the second dose, 10 days later. Win-win all round. Apart from the saving in cost of the actual drug, my yellow sharps box last twice as long and they only need to courier my prescription down under refrigeration from London half as often. So I feel I am also quietly doing my bit to shore up the heavily stretched and much loved NHS.
I repackage my Pegasys single use vial into three syringes of 0.33 ml (60 mcg) each and use one per week. Syringes are cheap and so am I. Check out cdc guidlines for repackaging, USP 797, here is a web site : cms.gov/Medicare/Provider-E...
Well thank you Flynn. That's really helpful. Indeed a third of a dose a week would be preferable to a half every 10 days, as the half life of the Peg, I understand, is only a week anyway. I am one delighted Daisy. My platelets went down rapidly from around 1000 when I started the Peg in July but have now been hovering around the low 500s since October. Hopefully a slight increase in dose plus this better distribution will get me on the operating table by the summer, for my hip replacement. Thank you.
Problem with the US system is no one, including the insured patient, is financially motivated to fix this problem. If we had to pay even a tiny fraction of the $180,000/ year we would be forced to get creative. But I hate to see inefficiency anywhere.
As I note above UK already has more efficiency for Besremi with smaller and double use syringes.
I'm afraid there's not much about this world that I even begin to understand these days.
Hello Hunter, crikey what a journey so much going on for you, your family and your medical team, lm bowled over with all your experiencing right now and lm sending you and yours my prayers and best wishes. Adiewon
Right on. If a Dr's office starts to get more Bes patients this could work well with cooperation from a compounding pharmacy. Maybe the dose could go into an individual generic insulin pens (I'm not qualified to make that judgement)
I am the 1st one at my Dr's office and the Rx process has been an experiment in its own right.
Given the sums involved, it’s an outrage that patients are forced to waste these meds. I have to squirt half of my 90mcg syringe into the sharps box each week. We can put men on the moon, but we can’t produce simple 45mcg syringes?
It's actually the "men on the moon" precision that got Besremi dosing/delivery to its maximum profits for the maker, via tweaking the US system exactly as required for that goal.
For Bes, it starts at 50 to 100 mcg, and the remaining 400-450 is tossed. If one gets its max dose of 500, then there is no waste. But that max dose will likely be rare.
Good luck Hunter. You know We’re always right behind you. Continuous thanks for all your posts & thanks in advance for sharing your experience moving forward.
It’s interesting that you’re the first Besremi patient at Johns Hopkins. Your knowledge and expertise regarding your illness always astonishes me. You’re paving the way for future patients who want to try this drug. I wish you all the best on this next journey.
Hoping that your new trial on Besremi works for you... & I can easily empathise & comprehend the distractions that can occur when caring for one's mother, as I also have such privileges these days...
The CV–19 ramifications, have proved to be one of the greater challenges I've faced in caring for my mother's health, & that is largely due to the aberrant influence of siblings who have chosen to remain unvaccinated. Leading to my 85yo mother's vacillating equivocations concerning the pros & cons of vaccination, (mum also has a rare blood type which may be prone to more severe CV–19 symptoms & outcomes). However, I have just managed to subtly suggest the 3rd Booster will be required if she hopes to have another hip operation shortly etc...
My mother will be 86yo tomorrow, & is planning to have visitors of the unvaccinated genre,which all highlights another of the many dysfunctions the CV–19 pandemic has wrought across family units & society moreover in the past couple of years...
Anyways, back to Besremi Steve... I have read a great deal about many of the known "side-effects" that can occur within a variety of different people etc... Knowing your love of deep research, I am sure that you have seen and considered all that needs consideration...
In Australia, (just as there has been in Europe & the USA), there is a hard push to have Besremi available here too for PV patients on our PBS scheme etc...
One of the more noted side-effects is that of severe depression...
Earlier on in my own treatment, I had trialled Ropeg Interferon, and I too succumbed to intense depression, (along w/ suicidal ideation), during that period...
However, the list that I have recently observed on a Bloomberg article, was far more comprehensive, and I include here below for your further interest...
Obviously, and as we have all learned through our MPN journey, we are all made just a tad differently, and what works for one may not for another etc...
Stay safe, happy & well my friend...
Steve
(Sydney)
Bloomberg article:
PharmaEssentia’s BESREMi® (ropeginterferon alfa-2b-njft) Now Available for
the Treatment of People With Polycythemia Vera in the United States
BESREMi^® is the only therapy indicated for adults with PV regardless of
treatment history
PharmaEssentia introduces holistic services program to support prescribed
I did, of course, check out the IFNs thoroughly before deciding to use them. Fortunately, I have no hx of depression so I was not unduly concerned about that issue. I have an issue with arrhythmia, but it has not been a problem with the PEG. I doubt Besremi will be any different.
The whole COVID infection certainly made things worse. She was apparently asymptomatic but had to be on the COVID unit, which meant we could not visit her. I could not visit anyone since I contracted it. I suspect we were both exposed in this truly dreadful Rehab facility that the hospital originally discharged her to. Crummy place overall and COVID is rampant there. There were several staff there not bothering with proper mask protocol. The rest of the care was terrible too.
I hope your Mother's birthday can be safe and enjoyable for her. Perhaps the unvaccinated sibs will take over additional responsibilities since their choices are affecting other family members. One can only hope.
Hoping that your Besremi journey continues in a positive manner...
As to my siblings... One believes that God told her NOT to be vaccinated, (BTW this is that same Christian deity so popular in many forums - father to JC etc).
Apparently, she has little comprehension of her mother's age & general health, not to mention her rare blood type...
In any event, I have finally managed to arrange her 3rd Booster, fingers crossed now is about the best I can hope for, I suppose...
The level of uninformed ignorance out there I find stupefying... The absurdity of being a human being... (?)
How odd. I am pretty sure that same God was just fine with me getting vaccinated 3x. One wonders just to whom is talking when they are hearing such irrational things. Perhaps is as the Church Lady on the old Saturday Night Live sketches used to exclaim.
Yes correct Steve, and as one other simple cliche usefully depicts, "...fact is often stranger than fiction..." although seeking clarity where none exists is another of those ill–defined "wicked problems" in my view...
I've thought long and hard about questions such as these, and many others that have plagued my perception & understanding concerning the nature & actioned rational of humanity, (& what we know of historicity).
In my simple analogy, we are all driven by the central desire to first serve "self"...
I warned you it was simple!
Pertaining to self amusement, I sometimes feel a tad like an Alien race swept across our world one night, (must've been a night where I actually slept for more than an hour uninterrupted), and during that brief foray, they replaced my family w/ facsimile clones, and I know longer recognise those family members, nor their logical application to problem solving in this 'Brave New World' where far more has been laid bare & let loose from Pandora's box..
Pardon the puns, couldn't resist the temptation, ever feel such urges yourself Steve?
Praying that all goes well for you. Also for peace for your mother in her closing hours. And for yourself. Losing a loved one is difficult and painful even though there can be relief to see the suffering end.
Good luck! Please keep us posted! Are the injections intravenous?? And why don't they arrange for more people to have the rest of the medicine at the same time and thus not waist it?
Hi Hunter, just seeing this. Who is your Dr at Hopkins I also go to Hopkins and I have been on Besrimi since last April 2022. I'm up to 200, not much improvement yet but still hopeful!
I was seeing Dr. Braunstein but he left Hopkins. Now seeing Dr. Tania Jain. Have some more recent updates, the short version being that on 150mcg Besremi my allele burden has dropped from 38% to 9% but recently liver enzymes are up and needed to do a phlebotomy as HCT = 47.9%. Could not raise the Besremi dose due to the LFTs. First phlebotomy in over 2 years though. On the whole, very pleased with the response to Besremi.
It’s interesting reading about others starting on besremi and titrations up slowly. I was put on it mid Sept last and my oncologist has ramped it up every 2 weeks do that now I am at 500 ug the top dose. Still needed a phlebotomy 2 weeks ago and oncologist view is it can 6-10 mts to see an effect. Luckily no obvious side effects to date……
It is interesting how differently we all respond to Besremi. It speaks to how important individualized care is in treating MPNs. We all need hematologists with the requisite expertise in these rare disorders to ensure optimal individualized care.
Glad to hear that you are tolerating the besremi so well at the maximum dose. Wishing you all the best moving forward.
Hey Hunter - I too am a patient of Dr. Jain. I have PV w/JAK2 mutation (diagnosed in 2018). Went through typical protocol:
-Phlebotomy
-Hydroxyurea
-Jakafi
Referred to JohnsHopkins in Dec 2022. Dr Jain recommended switching to Besremi. Started my first dose (100mg) Dec 21 2022, second dose (150mg) Jan3 and my third dose (200mg) Jan 18. No real side effects (thankfully) but platelets have been increasing quickly since being off Jakafi. Yesterday's PLT was 1146. And my potassium levels are high. Not sure if this is due to high PLT counts or possible issues with Besremi... I have to hydrate today and go in for another CMP panel.
Anyways - let's stay in touch since we are both seeing Dr. Jain and on Besremi.
I have been through several MPN Specialists at Johns Hopkins. Dr. Jain is a great doc. Glad to be consulting with her now. It sounds like you have both erythrocytosis and thrombocytosis as a function of the PV. I have this same profile, but my PLT have never been as high as yours. I have responded well to the Besremi at 150mcg. This seems to be the max dose I can tolerate at this point. You can read more about my journey with Besremi in my updated posts.
Suggest you talk to Dr. Jain about the possibility of pseudohyperkalemia, which can be associated with thrombocytosis. Others on the forum have reported this as well.
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