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BESREMi anyone?

Blood Cancers & Disorders | Last Active: 11 hours ago | Replies (41)

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Just saw the oncologist at UVA and he’s recommending that I start Besremi treatments for my PV. I researched it and the side effect that worries me is peripheral neuropathy.

What can I expect?

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Replies to "Just saw the oncologist at UVA and he’s recommending that I start Besremi treatments for my..."

Hello, I have PV JAK2+ Diagnodes 3 1/2 years ago at age 55. I’ve been on Hydroxyurea since day one. The doses have changed and now taking it daily. I have severe photosensitivity, nerve pain, especially teeth and I have neuropathy mostly in my hands and feet/legs. It is random and I just pay attention as I lose my balance easily and sometimes roll my toes from not picking up my feet enough while walking. Honestly I thought it to be the PV more than the meds? They tried to switch me to Jakafi but that sounds scary with side effects? Where you taking Hydroxyurea? I haven’t inquired about Besremi because they said this drug is the least damaging. Please keep us posted. Good luck!

Thanks for your feedback. I just found out I had PV roughly 4 months ago (Jak2+) by a bone marrow biopsy showed. To date, I’ve only had phlebotomy and taking aspirin. Saw the specialist at UVA and he strongly recommended bypassing hydroxyurea due to side affects and that it only treats the symptoms whereas Besremi targets the Jak2 mutated gene. Not only that, there is data showing it can put PV into remission. There are side effects and recommend you check k them out as well. My Dr seems to think Besremi is, by far, the best treatment option.

Best of luck to you.

Hi there, I have been on Besremi for a year now and it has effectively reduced my platelets to the normal range from over a million with minor side effects - dry mouth, mouth sores, some fatigue and a rash at the injection site. Everything but the rash has gone away when they reduced my dosage and the results are positive enough to reduce the injection frequency to once a month. I wish you strength, healing and success with Besremi

I have been on Besremi for a year and a half. I would tell everyone that has a choice between taking Besremi and hydroxyurea to select Besremi. For some people, long term use of hydroxyurea can lead to some nasty side effects like mouth sores and ulcers which can be difficult to heal. Sudies have shown that Besremi can lower the risk of progression to myelofibrosis and leukemia, while hydroxyurea only deals with the blood counts but has no long term reduction of the cancer at all. The only possible side effect that has occurred from my taking Besremi has been dry flaky skin on my face and scalp. I went to see a dermatologist and he prescribed Skyrizi, and the symptoms have completely disappeared. The FDA just approved a new Besremi pen which will make the injections easier to do.

@csrb7007, I moved your question to this related discussion:
- BESREMi anyone? https://connect.mayoclinic.org/discussion/besremi-anyone/

Use the group search to find other Besremi-related discussions:
https://connect.mayoclinic.org/group/blood-cancers-disorders/
Did you decide to start Besremi? How are you doing?