Hello All~ I have been on hydroxy for ET for 9 years and have tolerated it well. My MPN specialist has talked to me about switching to Besremi. I also have JAK2 and ASXL1 mutations. I understand the benefits of switching to Besremi. I am wondering if any of you would kindly share what side effects, if any, you have experienced and how long it takes to adjust, especially if you are going off of HU to Besremi. My doctor's only concern is not knowing how Besremi will effect the ASXL1 gene and she is a MPN researcher. You would think they would have some data on that. I still work, so I am wondering if during this transition if it will effect my ability to work or will I need to adjust my hours the day after the shot. Any feedback greatly appreciated.
Side effects of Besremi? Switching HU to Besremi - MPN Voice
Side effects of Besremi? Switching HU to Besremi
I have PV with thrombocytosis as part of the condition. It used to be ET but progressed to PV about 12 years ago. I have been on hydroxyurea, Pegasys and Besremi. I was refractory to and intolerant of HU. The side effects of Hu were worse than the PV, I switched first to pegasys before Beremi was approved. (note that HU and Pegasys are both used off-label for ET/PV). I responded much better to the Pegasys both in terms of efficacy and tolerance. I later switched to the other interferon, besremi, when it was FDA approved for PV. I have found no difference between Pegasys and Besremi. Effectiveness and side effects are the same.
I also have a non-driver mutation (NF1) that increases my risk of progression beyond what is experienced with just JAK2. This is a significant part of why the interferons are a better choice for me. The IFNs are potentially disease modifying. HU cannot offer this benefit. My JAK2 VAF has reduced from 38% to 10%. While some still debate the important of reduced VAF/disease modification, I believe it is in my best interests to seek this goal. In addition, I feel better now than I did 10 years ago . my quality of life has improved on the IFNs.
I have experienced mild but manageable side effects on the IFNs. These include mild itching/occasional rashes that are well controlled with cetirizine. I experienced an elevation in LFTs to 3x/ULN. A daily dose of Milk Thistle Extract returned the LFTs to an acceptable level. The IFNs cause mild lymphopenia and borderline neutropenia. This is a dose limiting factor and I am maxed out at 175mcg. I take an immune boosting mushroom blend to boost my immune system. Note that I have not been more prone to infection and recover normally if I do get sick.
We are all different in how we respond to these medications used to treat MPNs. My response does not predict yours. I would not hesitate to switch from HU to Besremi (or Pegasys), particularly in the presence of a non-driver mutation. The only way to know how Besremi will work for you is to try it. You can always change if it does not work.
All the best.
Thank you, Hunter, for taking the time to respond and for sharing your journey with MPN and relevant, well researched information. It is hard to think about switching because I have responded so well to HU, but with the elevated risk of progression..... why not! I do live in the US and will need to get insurance approvals.... the next hurtle. Your feedback was kind and comforting.
Besremi is very expensive, costing $17K/2 doses (monthly dose) on on insurance plan. It can be very difficult to get it approved, particularly off-label. Pegasys is much less expensive at $4K/4 doses (monthly dose). Getting PEG approved can also be a challenge, but not as much as BES. It helps that PEG has been in common use treating ET for decades and is recognized as a preferred treatment in the NCCN Guidelines.
Due to the change in manufacturers, there is a shortage of PEG in many places. Some in the USA have reported they are still able to get PEG from their specialty pharmacy Septically, Caremark CVS has been mentioned. It would be worth calling around in advance of making a decision to see if it is still an option.
Note that of your doctor cannot get a medication approved, that is not the end of the process. Patients can file their own appeal that can succeed when a doctor-originated appeal fails, This is what happened to me the first time I tried to access Besremi. Navigating the appeal process requires a lot or work and knowledge about how to manage the process. Some choose to hire a professional patient Advocate for this reason.
Wishing you success moving forward.
That does sound daunting. Do you live in the US? My doctor has gotten approvals already to treat ET patients. It will depend on my insurance. Because of Medicare, I will only be paying $2,000 a year which I am grateful for. My insurance companies preferred pharmacy is CVS so maybe that is promising. Thanks for this additional knowledge. My doctor has never suggested PEG as an option. We will see.... 
in Australia peg on government subsidy $32 x4 135mcg in pack actual price on pack $600
Besremi not approved and not for sale
Sorry, I insist on a clarification: $17,000 for 2 doses, how many Mg? in the USA? Thank you
In the USA, monthly dosing of Besremi comes in 2 - 500mcg prefilled syringes. These are not designed for multiple injections so the balance of what you do not use is wasted. In my case, that means that at a 175mcg dose I waste 325mcg of each syringe. At $8,500 per syringe, it makes my skin crawl, but there is no alternative. Fortunately, I have good insurance. My out of pocket is $100/month until I reach my annual cap of $2,000. After that, all meds are covered $100%.
Not so bad in UK. I was given a pen containing 250+ mg and two needles so it is used for two 125mg doses. That is fine so long as the needles don't fail. It's a complicated procedure to set the dose and prime the needles.
hi just about to take my first ropeg tonight
While very grateful a bit apprehensive as I’ve tolerated peg very well
Any tips gratefully received
My tip is to read the instructions carefully and work out how to use the pen first. If it is the same as mine, the needles are protected by a blue sheath. As you inject, press it down first so the blue sheath is completely retracted and the needle is in, then press to deliver the dose. When you withdraw the needle, and the blue sheath is released, a red plastic thing pops up to cover the needle. I wasted a dose because I pressed down slightly on the blue sheath to see the needle better, and it triggered the red protector, so that needle could no longer be used. They are trying to make the process so safe that it is too complicated!
Best of luck with your first shot and hope you have a great response.
In a prior thread I noted some research on AXSL. Maybe your Dr has some updates on that as a researcher.
healthunlocked.com/mpnvoice...
I went from HU to Bes. I had split nails, bad odor (per my husband) course hair and generally felt no good on HU. On Bes these particulars went away and blood counts were still good.
Your question on side effects with Bes, most don't have bad ones from posts here. My main one was malaise and/or fatigue. Also some strange eye effects, super light sensitive at one point and an apparently durable improvement in my vision. You should discuss your dose with Dr and whether a minimum effective is best, this can minimize the sides. It would have best been for me.
I would have adjusted after about three months if Dr had not insisted on higher doses than I wanted. Finally my dose was limited by WBC counts as Hunter notes. But my Bes experience ended badly. My details were unique but an important side to watch for is autoimmune conditions, either new or increased. Sjogren's in particular is of interest as we do see it here. Thyroid issues are also well known and usually treatable.
The shot is long lasting so its effects, for me at least, were not much sensitive to when the shot happened, except maybe the 20 min or so after. If I were going to get the malaise etc it could be any time between shots.
Thank you EPGuy for responding to this post and the previous. I was sorry to read how Besremi affected you with Sjo's. Your strength is inspiring! I have appreciated greatly all your posts and the links to research and have learned so much. I have tended to keep my ET diagnosis on the back burner until now to consider switching meds. My appt is in a week to discussing next steps....... again thank you for your time and sharing your story!
Hello, if you have tolerated HU well for 9 years, then it doesn’t make any sense of switching unless it serves a calculated and better purpose than HU. HU is also a cost effective option for you compared to IFNs. This is just my personal opinion. Again, it’s upto the decision made by your doctors and you. All the best 😊🙏🏻
Hello~ There are also risks with staying on HU for extended time and HU does nothing to lower your JAK2 allele burden. I do also have a non-driver aggressive mutation, if I do progress, I am not sure how effective Besremi will be. I appreciate your feedback and believe me is one of my questions. "If it ain't broke, then why fix it."
Hi, I switched from Hydroxy to Peg a couple of years ago and it was a disaster for me I’m afraid to say. I experienced almost every side effect on the long list and had an awful 2 months. I was advised by my consultant to stop and go back to Hydroxy which I did gladly! I think the level of side effects differ greatly from person to person so I wouldn’t worry too much about what I experienced but I thought it was worth mentioning. Good luck with it, Inteferon is great if you can tolerate it, I wish I could but I’ve had to accept that it’s not for me! X
I am sorry to hear your experience with Peg. It has taken me six months to consider and interrupting my current quality of life is strong consideration and worry. Glad you are back on take with HU. Thanks for your response.
Hi, I’ve never taken HU - I went straight to Besremi shortly after PV diagnosis (and after multiple phlebotomies left me with very low ferritin and major fatigue). As I increased dosage (max I reached was 350) I had fatigue, flu-like symptoms 3 days after injection, and some rashes. I started daily Claritin and all of the side effects cleared up for me. My liver enzymes were also elevated for a while. Besremi has been extremely effective for me and now I’m down to 200 dose once a month, and actually have been able to skip a couple months recently so I’m currently at once every 2 months.
Thank you for your response! It is very encouraging to hear stories of those who have tolerated it well and have had good results. Love the idea of once a month or less.... take care.
Advice on blood counts, switch to Besremi
A follow up to my post about switching from hydroxyurea to interferon. Questions about switching to besremi or anagrelide.
Switching from Pegasys to Besremi
Switching from Pegasys to Besremi
