Starting Besremi

[SManzo]

Hi everyone,

Thanks to this forum , I followed up with an MPN specialist for my PV and am starting Besremi next week.

I have been treated for the last ten years with venesection only so am a little nervous about starting a new medication and getting possible side effects.

For anyone that has been on Besremi how were the side effects in the beginning and also how long before you saw a decrease in cell numbers ?

Thank you so much

[hunter5582]

Glad to hear that you are consulting with a MPN Specialist. It makes a large difference in the quality of MPN care.

I have been on Besremi since it first can out. I was on Pegasys for 6 months before that. I found that the interferons resulted in a fairly rapid hematologic response (8 weeks) but my response may well be faster than others.

Besremi has been easier to tolerate than hydroxyurea and venesections. Besremi is also significantly more effective. Side effects have been minimal. I experience itching and occasional rashes. This is well controlled by a daily dose of cetirizine. I experienced a 3X/ULN increase in LFTs. My Integrative Medicine doctor prescribed Milk Thistle Extract. , which returned to LFTs to normal. I am currently at `175mcg Besremi and maintaining a complete hematologic response with only an occasional phlebotomy. This is my maximum dose as I also experience mild lymphopenia and borderline neutropenia.

I have found that the low and slow approach to Besremi dosing is a better approach. This would be an issue to discuss with your MPN Specialist.

Wishing you success moving forward.

[Anag]

Ho Smanzo. Everyone is different. The first time I took Besremi I got a very itchy rash in the night and luckily I had antihistamines at home. They helped immediately. Just two day of AH and all was fine. two weeks later the same but a fraction of the redness and itchiness that was it

The other side effect was psychological. Extremely jumpy, nervous, talkative, anger prone on day 3-6 after injection. This got just a bit better with time I tried to avoid every stress on those days I told my family

I have ET. It’s the first med that stabilized my thrombocyte and brought them down within 8 months. Unfortunately, around the 10 month point every part of my body, where I had had injuries (joints) started to have pain. It was never properly diagnosed. No swelling but pain in the tendons (hands feet neck r. Shoulder. I kept stopping treatment and restarting on minimum dosage. Sometimes it was debilitating. Couldn’t walk or use my hands, especially in the first 3 hours in the morning. Could raise my head from the pillow.

I eventually stopped completely 20 months (June 2024). The thrombos rose very slowly. I’ve been pain free since end July. All side effects gone. Besremi is still working a bit. I will try to restart in February because it works and stay on a strict anti inflammatory diet. That had helped over the years. During the time when the symptoms flared, I was cheating on the diet because I etwas travelling a lot. Hope dies last.

Uncomfortable urine odor is another side effect I tried to support my kidneys at that time with lots of water and cranberry juice therapy for a week here and there

Unfortunately, the side effects from my other two meds are worse. 🫤

I know from many of my ET colleagues that it’s working well for them with little problems. It’s always great to counteract eventual side effects with natural treatment.

[john0084]

I'm interested to know if your in the UK as getting a nhs prescription for besremi must be like winning the lottery just googled some costs my hydroxycarbamide cost 12 pence a tablet, I take 5 a week. On the other hand besremi about £600 a standard dose.

[Roxanne22]

Yes like John above I was also wondering where you are located SManzo, as in UK there is a 'block' on prescribing despite the global shortages which are set to last around another year - I am too also due to start Interferon, and was told it was now important due to a high % AB discovered last month, and yet am in catch 22 as no supply of peg, yet the NHS Trust England will not fund the prescribing of Besremi - what a farce eh? Claire Harrison is lobbying Westminster and NICE for this block to be lifted and a video outlining her efforts was posted a week last Mon on youtube. I followed up with my local team yest and still no news on this, so they are still unable to prescribe anything for me, I have been told to go back mid Nov, to see what the situ is then. After 7 years treating myself naturally it's ironic that it's now my time to have the efficacy of the interferon and yet in this situation - here's to hoping that the access to the well-stocked Bes becomes avail v soon for myself and others in UK. Good luck with your next steps SManzo, like you I have a bit of intrepidation too but welcome it now to bring the AB % down to a 'safer' level. Love to you all. x

[Pogm]

Hi, I was diagnosed in 2018 with PV and was only doing venesections and blood thinners before my MPN specialist recommended Besremi in July 2023. I started with the lowest dose and other than an urgency to urinate for 7 days, I did well. I titrated up to 100mcg in Sept 2023 and began having terrible headaches and raised blood pressure. I went back to 50 mcg and side effects resolved. January of 2024 I titrated up to 75mcg with no side effects and recently( Oct) went up to 100mcg again and feeling ok. My Hct is being better controlled at this dosage The best approach to this med is " low and slow". This allows your body to adjust to the dosage. It can be a " game changer" for patients with PV. Hope your journey is successful and remember to always advocate for yourself!

[SManzo in reply to Pogm]

Pogm. Thank you for the information. They want to start me at 100mcg, I asked about starting lower but my MPN specialist didn’t recommend it. I am going to start a daily antihistamine just for prevention with the rash and itching side effects. Hopefully that will help.

[Pogm in reply to SManzo]

My itching became so intolerable, even before starting Besremi, that my MPN specialist finally prescribed Jakafi at a small dose(5mg 2x daily). It has greatly relieved the symptoms and can be equally helpful in reducing my numbers. Good luck!!

[SManzo]

I am based in United States. So far they haven’t informed me of any national shortage yet here. Good luck to you all and thank you so much for the feedback . It helps tremendously .

[KLCTJC]

I have been on Besremi for almost 2 years now. And I feel great. It did induce hypothyroidism, but is now well controlled. But I haven’t had any issues on it. I actually feel better than I ever had. It has been a miracle drug for me. Hopefully, it will be for you too.