Always my go to site for some good insight. My Hematologist is talking about me considering Besremi. Thus far I have not been on any meds. He believes I maybe be a good candidate as I have no had any MPN events. I like the fact it does target the JAK2 gene and I am game to try it.
My question to any of you that maybe on this drug how are you doing with side affects? Of course you read the side affects and there is reason for caution. Any information you may have I would certainly appreciate it
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josup26
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I have been very pleased with my response to Besremi and Pegasys. The IFNs have been more effective and much easier to tolerate than either hydroxyurea or phlebotomies-iron deficiency.
There have been some minor side effects. I have mild lymphopenia and borderline neutropenia. The levels are not so low that it is a significant concern. I have also had some mild itching and small pop-up rashes. This is well controlled just by taking Claritin.
On the whole, the benefits of Besremi far outweigh the risks and adverse effects. I hope you find the same to be true.
I have been on Besremi now for over 1yr with no issues. It makes sense to be aware of any potential side effects, but my experience is that it is well tolerated and has the benefit of suppressing the disease.
Thank you for the question. I am waiting to be approved for this medicine. After reading about the side effects I have been so scared to take it. To the point of tears! Every positive response to the question helps to ease my fears. A special thank you to Orangeboykitty for sharing her experiences with me.
Some long time Pegasys users have found Besremi is much harder to tolerate and does not do a better job of controlling blood counts so they have switched back to Pegasys. So if you find Besremi hard to tolerate, keep in mind Pegasys could be worth a try.
We're all so different! I've been much better on Besremi than I was on Peg. I've been on it for 5.5 months and my blood counts are controlled with no need for phlebotomy the whole time I've been on it. I'm on the lowest dose of 50mcg/2 weeks. The only side effect I experienced was a slight feeling of wooziness (not really dizziness because I was able to function). That went away after just a little while.
And I'm finding that PV symptoms are slowly going away. No more bone pain. No more neuropathy. No more numbness in my fingertips.
On Peg I was always fighting diarrhea, food intolerances (almost autoimmune stuff), and it did nothing for PV symptoms.
Been on Besremi for almost 4 months after 5 years of baby aspirin and phlebotomies. So far so good. Pruritis or itching after showering or sweating has been the only known side effect so far. My blood counts have been under control and so far so I have not needed phlebotomy so some of the adverse affects of the many phlebotomies over the years have improved dramatically. Everyone is different of course but for me it has been a net positive so far.
I was also hesitant to start Besremi given the warnings. I had not taken any medication for my PV since dx in 2016. I've been on Besremi since January 2022 (5 months) and the only side effect I have so far is migraines. I had migraines before, but with Besremi I can get a streak of them the week after the shot. They seem to have abated after Emgaity and Nurtec as well as other supplements.
I'm glad I started it. There is no way my disease was going to get better just doing PB and aspirin.
Thank so much for your note. After hearing from many people on this wonderful sight I think I am going to jump in. If I can't tolerate it i'll come off it.
I just read your post and very interested because I am on Besremi now for 3 months and just developed a strong headache on one side of head for almost 4 days. I am very concerned because I also have elevated blood pressure. How common are headaches with Besremi? I didn't experience it until now. What is Emgaity and Nurtec? Prescription drugs for headache? I am a person that never got headaches. I do see the MPN nurse in few days to have an extensive blood panels done. Appreciate your response.
I do get headaches from time to time. I don not have high blood pressure. Headaches are a side effect of Besremi. I find if I take some Tylenol i get relief. However this is something I would speak to your MPN nurse about. For me the small side effects I have I wouldn't stop the Besremi as the benefits for me have been excellent. Best of luck!
Hi there. I think the elevated blood pressure along with headache is concerning and should be addressed right away with your hematologist/doctor. Emgality and Nurtec are prescription drugs for migraines. Yes, headaches were seen in the clinical trials. I have always had migraines, but I did get on a terrible streak of them when I started Besremi but they are much better with the drugs mentioned above. What dose are you at? Have you increased it recently?
I am on 100mcg of Besremi and have been at that dose for 2 months. I never experienced a headache until this last dose( 24 hours later). I will be adding a BP med this morning to see if BP comes down, currently at 160/90. Maybe I will need to reduce the dosage and continue to give it a try. I was so pleased with my WBC, Hct, Hg and platelets all moving in the right direction that it will be disappointing if I have to discontinue. I will know more tomorrow with the MPN nurse.
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