Besremi side effects.

[TheaterCrazy]

Hi, I’ve read everyone of your posts for the last year and a half, and I really don’t know how I would have managed without you all. Hunter told me to get a specialist, and I did - Kuykendall at Moffitt in Tampa. I have my intown hematologist who I like and trust completely. She and Kuykendall are in touch.

I’ve had PV for two years. Aspirin and Eliquis plus phlebotomies as needed. Now on Jakafi (7 months) 5mg in am 5 mg in pm. All my blood work is perfect so Drs are happy.

Unfortunately I have had so much nausea from it. Sometimes it’s debilitating. Last week I was given a reprieve and went off of it as a trial for one week. What a relief it was. Blood work tomorrow to see where my numbers went after the week off.

I’d like to go on Besremi but I worry that I’d be swapping side effects I know for those I don’t. I realize everyone has different reactions, but it would help so much, now that so many of you are on Besremi, to know your experiences on it.

From some of you I read there are flu like symptoms. Are there others? Has anyone experienced nausea? Thank you in advance for your help and thanks again for being here. This group is such a comfort.

[hunter5582]

I have not experienced any nausea or other GI effects on Besremi. I have experienced some itching/rashes, occasional arthralgia, and mild leukopenia. On the whole, Besremi has been much easier to tolerate than hydroxyurea or phlebotomies.

If you move forward on Besremi I hope you find it as successful as many f us have.

[Barbiebreath]

I have only had 1 injection. I did experience a little nausea and diarrhea for about 8 hours. After that - nothing. No more side effects. I did curl up in the bed for those 8 hours but the nausea was mild.

[Hopetohelp]

Not on besremi, but on pegysus, another form of interferon. Might be another option that may be available to you. Tolerating it well. No sickness feeling. Hope you get the side effects sorted. Must be horrible to feel ill so much

[Meatloaf9]

Dr Kuykendall has an excellent reputation as a mpn specialist. Hoping all goes well for you. I have PV but take HU. No adverse effects with it and blood counts well controlled thus far. Only on it since July 21. My theory is to try interferon at some point and save Jakafi for when/if the progression to MF comes, just my theory. I would definitely have the conversations with your mpn specialist and I would follow what they recommend. We are all different in what we can tolerate. Good luck to you going forward.