BESREMi anyone?

Hello, @upnorth94 Hydroxyurea is the classic medication for PV. But it’s not for everyone. You mentioned you didn’t do well with it. Were you having side effects or the hydroxy didn’t control your PV?

I found a couple of other members who are also on Besremi so hopefully they can give you some insights as to what they’ve experienced and how well it’s working for them.

@treeore has been taking Besremi treatment for their PV. (This is the reply mentioning the Besremi.
https://connect.mayoclinic.org/comment/865855/
It’s from this discussion:
~Polycythemia Vera: Just been diagnosed
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
~~~~
@sanjayd mentioned Besremi in this comment:
https://connect.mayoclinic.org/comment/892975/
From the discussion:
PV and fatigue
https://connect.mayoclinic.org/discussion/pv-and-fatigue/
How are you feeling with the new medication? Are you currently having side effects or just concerned about the possibility?

My Wife is about to begin Besremi as her Hematologist just admitted that it is a frontline use drug after a year of harassment for our refusal to use Hydroxyurea.
If anyone out there who has used Besremi could please inform me of how their treatment, side effects and results are, I would greatly appreciate the information. Thanks to all.
Keith

Hi Keith,
I moved your message to this existing discussion:
- BESREMi anyone? https://connect.mayoclinic.org/discussion/besremi-anyone/

I did this so you can see @loribmt's helpful post with several references and so you can connect with members like @upnorth94 @sanjayd @treeore who are on or considered treatment for polycythemia vera with BESREMi (ropeginterferon-alfa-2b-njft).

When will your wife begin treatment with Besremi?

Thank you Ms. Young,
As you may know I am new to this website. My Wife was diagnosed with Polycythemia Vera just over a year ago although we believe it may have begun much sooner. We have attempted the phlebotomy method which has held her hematocrit to normal since January with no phlebotomies. However, white blood cells and platelets have continued off the chart and her iron levels are now barely recovering from the previous blood draws. Sadly, we are scheduled to see a new Hematologist soon as our current one believes Hydroxyurea is the only available front line medication. We would prefer a more natural approach although now my Wife's hematocrit is up to 49 and the Dr.'s notes indicate that I am personally responsible for leading her to a leukemic state. With interferon being produced in the body and when it is well recognized that Besremi is far superior to Hydroxyurea, it appears we may need to pursue that direction. I have read the extensive labelling and although adverse events only occur in approximately 3% of patients, that list of adverse effects is vast.
Any information or advice would be greatly appreciated,
Thank you.
Keith

Hello @akeytoo, I don’t think anyone is fond of chemo treatments but they can be absolutely necessary for some of us in an effort to rid our bodies of cancer cells and to buy us precious time. With blood disorders, at this time there are no natural cures I’m aware of. Hopefully in the future with discoveries such as Car T therapy and biologic targeted meds, this could be a reality some day. I know I would have loved that as I had acute myeloid leukemia and pumped full of a laundry list of meds along with a bone marrow transplant. However, 4 years later, I’m the poster child for success! So there is a plus side to these meds…they work.

Hydroxurea has been on the market since 1967 and is a frontline drug for Myeloproliferative blood disorders (myeloproliferative neoplasms) such as PV, ET, myelofibrosis, CML, etc. It has helped millions of people world wide manage their symptoms for their blood disorders.
As you have learned, without treatment, these conditions can sometimes progress into advanced stages of disease in the bone marrow.

I’m posting a credible, relevant article on myeloproliferative disorders from verywellhealth.
https://www.verywellhealth.com/myeloproliferative-disorders-5209654
Besremi is a newer drug on the market having been approved for use in PV patients by the FDA in November of 2021, though it has been used in other countries for a short time prior. It’s been successful in reducing white and red counts and slowing the progression of the disease. But like Hydroxurea, there are potential side effects as well. So it can be helpful for your wife to keep a little journal of any changes that take place.
There aren’t many members I could find in a search who are taking the drug so it will be really helpful for others if you’ll give us updates on your wife’s progress with the Besremi.

Will your wife be giving herself injections or will she be going to an infusion center?

@akeytoo
Hi Keith, I was diagnosed with PV 5 1/2 years ago, after 2 1/2 on Hydroxyurea I have changed to Besremi. I could not take Hydroxyurea as it made my platelets go crazy, called oscillating platelet syndrome. I will have been on Besremi for 3 years in November. I give myself an injection every two weeks 250mcg and for me it was a life changer. No more headaches, etc. my platelets are within normal range and no phlabotomies for over a year now. I can walk 2 miles a day and do my normal activities. I will be 78 this month. My side effects are very minimal, the itching is not bad at all..all is good!!
All the Best….KAK

@akeytoo aloha Keith! I just started on Besremi a couple weeks ago I give myself my own injections, but before that I was on hydroxyurea for 33 years I am glad to be off of that for now and I’m not having any symptoms from the besRemi yet my dose is only 100 µg right now and I give it to myself every two weeks. My doctor wants me to stay on the hydroxyurea five days a week until I can transition off pending blood test results. The pharmacy that sends me the drug calls me every two weeks to check in to make sure I’m not suicidal or having weird side effects cause there’s so many this is helpful. It’s keeping me in check on my symptoms, which I haven’t noticed any yet. Hope all goes well with your wife and things get under control. Let me know if she starts to have any symptoms too. Take good care Leene

I have been on Besremi for over 9 months; one injection every 2 weeks.
I saw my hematologist last week and he was very pleased with my progress. My blood test results were 280, well within normal range (150-450); down from a high of 698.
I am still on the 'starter' dose of 100mcg.

I no longer have headaches or the crippling fatigue I had before starting Besremi, though 2 days after the injection I do feel a bit tired and look forward to an afternoon nap!
I do have a dry mouth and go through bouts of either not being able to sleep or falling asleep and then waking up after 2 hours. I don't let it stress me and it passes after a week or two.

The doctor asked me whether I feel better or worse since I have been on Besremi and the answer undoubtedly is: BETTER.

I just completed 1 yr on Besremi. I was diagnosed with PV in Dec/2023. I am 74. I too declined hydroxyurea from the outset for various reasons, including skin cancer issues. I’m glad I did. My Besremi was just lowered to 100 every month! I feel better than I have in several years and my blood tests have improved. I am deeply grateful for the MPN specialists who have been so intent on giving me every opportunity to have the best life I can even in my mid-70s. Yes, there will always be some side effects, etc. But on balance, for me it has been a no-brainer to take the best treatment we now have to potentially halt progression and allow us a better quality of life. Best wishes.

I have been on it since June 9. Started out really well from 1400 down to 732 at 50 but then my platelets would bounce up 840 then down to 730. I’m now at 250 and we are going to increase the dose every two weeks by 50 in the hope that kicks it down to at least the 500 range. Really hoping this works as I feel great. Just one day of feeling tired after the injection. A few headaches and sometimes heartburn. My skin is better. My energy is better. My blood tests are way better. Much prefer to hydroxyurea.