Peg vs Besremi side effects?

[George1976]

Anyone been in both peg and Besremi? If so what side effects were common and what were different?

I have CALR Positive ET and was on weekly 45mcg peg for 4 years and it worked well. My usual side effects were some depression, increased upper abdominal pain, and mild flu like feeling for a day or two after injection. Toward the end I had developed a neuropathy that caused me to have weakness in my feet which still has no known cause after many neurological tests. Peg was initially suspected especially since my last dose caused extreme burning in my lower legs. So I stopped peg for a couple months then started on HU. The neuropathy (weakness main concern) has not improved while I’ve been on HU for past couple years and want to try Besremi to see if it works without the neuropathic pain.

Thanks for any replies.

[Orangeboykitty]

I've been on both Peg and Besremi. Peg gave me autoimmune issues, making it impossible to tolerate gluten and dairy. Big reactions in my GI system when the doc tried to increase the dose even slightly. So I ended up needing an occasional phlebotomy. Finally, when Besremi became available here (in Israel) I left Peg behind and switched. At the beginning I had slight wooziness....not quite dizziness, but close. That went away fairly quickly and now I'm tolerating the Besremi without significant side effects. Please remember that we're all different, and my side effects, or lack of them, can be very different from yours.

[Wennn in reply to Orangeboykitty]

how much Besremi do you use now?

[Orangeboykitty in reply to Wennn]

50 mcg/2 weeks. I was on 45mcg weekly of Pegasys

[George1976 in reply to Orangeboykitty]

Thanks. Even when things were relatively good for me on peg, I too had extreme reactions to some foods, occasionally leaving me feeling very sick the next day. No problems at all now with same foods. And some of my docs think my neuropathy is from a yet to be identified autoimmune problem too. One thought I picked up Covid in early 2020 and that’s been playing a role.

[hunter5582]

Sorry to hear about the troubles with Pegasys and that the HU does not seem any better. Neuropathy is a potential side effect of both medications. Hopefully you will find an option that suits you better.

While Besremi is theoretically easier to tolerate than Pegasys, I did not find them any different in regards to adverse effects. I experienced mild leukopenia and mild itching/rashes with both. Noting that the itching seems to be fading away with time on Besremi. Note also that I am HU-intolerant and refractory to it at lower doses.

I would wonder a bit if the neuropathy is not related to the meds. It is hard to say since both of the meds you have tried can have this adverse effect. Or perhaps the meds triggered an underlying issue already present. Hopefully you can work with your care team to sort this all out.

We are all different in how we respond to these meds. Some people do better on Besremi than Pegasys. A few people on this forum have experienced the opposite. The only way to find out is to try Besremi and see how you respond.

Please do let us know how you get on and what you learn. Everyone can benefit from your experience and knowledge,