Besremi Side Effects

[Artelu]

Hello, I would like to hear from anyone who has experience with Besremi. After 9 years on Hydroxyurea, it stopped working for me. I now have some scarring in the bone marrow, as per biopsy. I am a 60 year old female, and now on Besremi since February 1, 2023 , about 10 weeks. However, two weeks ago I started suffering from debilitating headaches. I take 2000 mg to 2500 mg of Tylenol daily but quality of life is terrible as the headaches tend to linger and not fully disappear. I can't take aspirin due to risk of acquired Von Willebrand, which was an issue last year. My platelets fluctuate weekly between 700,000 -800,000 and hematocrit between 41-43.5. Past 42 hct I need a phlebotomy, as I had a TIA when I was at 43. I want to give Besremi a chance but I am just having a terrible time with the headaches. This week's dose will be 300. Then, I see my oncologist next week. Has anyone had bad headaches while on Besremi?

[hunter5582]

I have not experienced headaches from Besremi but am only taking 150mcg. Headaches are listed as a potential adverse effect from Besremi. rxlist.com/besremi-side-eff...

If this is an adverse effect from the Besremi, then increasing dose is likely to increase the adverse effect. Suggest ruling out other potential causes of this symptom. In the absence of another cause, it would be reasonable to think Besremi is the cause.

This is definitely something to discuss with your care team prior to the next injection. Suggest contacting the doc to see if you should hold the dose steady or possible reduce it. Tylenol can be hard on the liver. Besremi can be as well. Suggest reviewing this with your care team as well.

Hope you are feeling better soon. Please do let us know how you get on.

[Artelu in reply to hunter5582]

Thanks for your reply. Definitely liver issue is a concern with the Tylenol. Hope this works itself out.

[gjh8733]

I have been on Besremi since Sept 2022 and at the 500ug dose twice weekly since Jan 2023. I was switched to Besremi from Hydrea as the latter was no longer effective

I have experienced headaches with Besremi but it is usually in the first 3 days post dose and are accompanied by flu like symptoms. Fatigue and muscle ache do persist beyond the three days. I also developed a rash starting last November - thankfully it is only mildly pruritic

[Artelu in reply to gjh8733]

Thanks for reply. I hope you feel better. Now I know what to expect.

[KLCTJC]

I am thinking this is dose dependent. My MD Anderson doc recommended increasing the dose only once a month. Can be slow acting. Maybe they could reduce you and give it a month to 6 weeks and see. I am on 150mcg and platelets are 800, everything else is ok. But doc wants to stay at current dose for another month then will increase. Hope this helps. Feel better

[Ccsintx in reply to KLCTJC]

I am under the care of MDA also. Do you mind me asking your doctor. Mine is Dr Bose. He has talked to me about Besremi but not yet.

It is nice to connect with someone at the same place.

[KLCTJC in reply to Ccsintx]

I saw Dr V, but he sadly he retired in February. He set me up with a female doctor and I will see her in August. He said she is handling all of his interferon patients. So we will see. I loved Dr V! Hated he retired.

[Ccsintx in reply to KLCTJC]

yes heard great things about Dr V

That’s why I have Dr Bose

Blessings to you !

[mfh7 in reply to KLCTJC]

I was also a patient of Dr V and now see dr masarova. That is likely who you were transferred to as well. For what it is worth I have only seen her once but I liked her. She seems very knowledgeable and is very positive.

[KLCTJC in reply to mfh7]

that is who I am going to see! I am so glad to hear good things! I will see her in August. Thanks!!!

[Artelu in reply to KLCTJC]

Thank you. I will definitely discuss with my doctor.

[Artelu in reply to KLCTJC]

Thank you. I will discuss this with my doctor.

[BeachNJ]

Hi. I'm so sorry to hear about the headaches that you're experiencing. I've been taking Besremi for almost a year. My dose and frequency has been changed a few times since starting. Currently I take 150 mcg every 4 weeks due to low platelets, low white blood cells and elevated liver enzymes. The side effects that I experience are flu-like symptoms; chills, sweats, back and shoulder pain that radiates down my arm and makes them feel tingly and achy, fatigue and vision weakness. On occasion I've had a headache after a dose, however they aren't chronic and they've been mild. My side effects continue for a full 2 weeks with the worst being 7 days after a dose.

I hope you find another treatment and relief from this. How old were you when diagnosed? Please keep us posted.

[Artelu in reply to BeachNJ]

Thanks for your reply. I was diagnosed with ET at 47 and PV at 50.

[GardNerd]

It’s great that you’re seeing your doctor next week and will have a chance to discuss this. Maybe he’ll have some ideas.

My journey seems a bit similar to yours. I was diagnosed at age 44 after having a TIA. I’m 61 now and started Besremi when I was 60 (last June). I haven’t had headaches but did experience fatigue, very mild nausea, minor rashes, and some of the depression that is associated with Besremi. It was all tolerable, so my doctor increased the dose every two weeks until I got to 500. I’ve been at 500 since October, and all of the side effects (except the rash) have moderated or gone away over time.

Headaches are a hard side effect to live with. Maybe the doctor can slow down the dose increase or let you stay at a lower dose for a while to see if your body adjusts. The benefits of Besremi may be worth hanging in there longer - if you can bring those headaches under control. You’re getting care at an excellent place, so hopefully they’ll have some ideas for you.

Best wishes!

[Artelu in reply to GardNerd]

Thanks. This gives me hope.

[Ovidess]

Yes, Artelu, I do get headaches, fatigue, and especially insomnia on Besremi, but I have gotten those symptoms before the meds too, so I'm not ready to throw in the towel. (The burning /freezing sensation on my back torso and arms is pretty clearly meds related, but more freaky than distressing.) I had my 6th injection last week. HCT basically normalized w/o additional blood letting, and platelets were coming down impressively (over a million platelets iat the turn of the year, down to 483 or so by April. For now the Besremi is held at 300 mcg since it was doing its job (but perhaps contributing to my symptoms.) The doctor was worried about some visual/brain symptoms I experienced a few times both before and after meds, so I have to have retinas checked this week. (I think it is the thick blood at work.) I'd be so happy if the numbers stabilize so I could have injections less often or lower dose. Heart ultrasound also on order, though the cardiologists did not have reason to suspect abnormalities. Just did sleep apnea test last night--another of doctor's "orders" to be sure that is not causing red blood cell disorder. Looking forward to some normality soon! I wish the same for you.

[Artelu in reply to Ovidess]

Thank you. I too have begun experiencing insomnia. Hope we can weather this.

[Elizka]

Hi. I have had migraines my whole life, and when I first started Besremi I had streaks of migraines that required I look into new medication. I'm now on AIMVOIG and Nurtec for migraines and migraine prevention (Thanks Hunter) and I've had no issues with Besremi causing migraines. I do notice some mornings I have a regular headache, but I drink water and some LMNT power and I'm good. Best of luck

[Artelu in reply to Elizka]

Thank you