New on Besremi, no other meds prior, just infrequent phlebotomies. Doses were 100-50-50... not really high. After first dose high blood pressure and GI issues. Second dose - things calm down to totally bearable.. After 3rd dose GI issues suddenly got worse. Severe pain in stomach that is 24/7 and keeps me up at night. While waiting to hear back from my doctor wanted to know if somebody had something similar and how they deal with that.
Also, going thorough separation with my husband , cant exclude possibility pain is stress related....? never was before though.. I want to give this med a fair try so trying to separate problems so to say.
Thank you in advance for replies.
Natalia
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Nat2025
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Sorry to hear about your GI issues. If you check my recent posting history you will see that I appear to have developed autoimmune problems on Pegasys, possibly exacerbated by switching to Besremi in November (95mg every two weeks)
I’ve had bad mouth ulcers for several years and then gastric issues in December. An endoscopy revealed a 7 cm ulcerated patch in my lower oesophagus. Appears to be Atypical Crohn’s, probably resulting from my autoimmune issues.
Nausea, diarrhea and other GI issues are possible Besremi adverse effects. While stress may be a contributing factor, in the absence of a history of GI issues, it is reasonable to be suspicious that this is a Besremi adverse effect. Suggest that you let your MPN care team know what is going on. You will likely need a more thorough assessment, including consult with a gastroenterologist.
"Suddenly, Worse. Severe and 24/7" are attention words that point to high risk. As Paul above, I had a very sudden auto immune reaction to Bes. Mine is permanent and irreversible. You can see my posts "Last Dose" for my history. These risks are known and on the label. You should discuss with Dr whether to continue, if your severe reactions are IFN related at the very low dose of 50mcg, it suggests increased risk of a negative outcome.
I hope you can discuss with Dr before your next dose is due.
May I asked what your auto immune reaction was. I have been on Besrimi for three years I am getting all kinds of side effects lately and considering if it is worth it. Thanks
Please provide a detailed description of your new sides. Also, is your Dr well familiar with prescribing IFN? This question matters a lot as many Drs are not well versed. A recent and obvious change for the worse could be a serious warning as I briefly had.
These outcomes can happen on even small doses. What doses have you been taking?
You can see my worst case outcome in my posts "Last Dose". I acquired Sjogren's overnight from a last dose that was absolutely not "worth it". It was enabled via a botched vaccine, but haywired vax is not required. Sjo in moderate to severe form is an evil monster you want to keep far away. And it was a "common" side in the Bes trials. But your recent sides may point to something less worrisome.
This image is the severe black box warning in the labels for both IFN-a's that we take. As I found out, it's not just to make the lawyers happy. We've seen most or all of these severe outcomes on the forum.
Morning I was on peg for a year and half within a few months things started getting very bad and ended up with autoimmune related illnesses. Please do not let your haematologist disregard the symptoms you are having as non related as they did mine. If you have an mpn specialist please contact them ASAP as it could be you are extremely sensitive to the interferons. Wishing you all the best and sorry to hear you are suffering x
As I experienced, not all MPN specialists are up to date on IFN. I think this is changing since the approval of Bes, but it might be good to ask Dr how many IFN pts they have.
Suddenly, worse, severe, 24/7, as EPGuy says! Happened to me too with adrenaline being thrown around my body non stop, although I was on Pegasys not Besremi but both are interferons. They can work very well but occasionally cause problems. I agree to talk to your consultant as quickly as possible. Please let us know how you get on.
Sorry to hear the Besremi seems to be causing so much pain. At 70, I Have been on Peg-interferon for several yrs. Good blood results but at times with a good deal of abdominal pain. 14 yrs with Et, the last several with PV. Its a long but survivable road. Peg dosing is weekly, perhaps that dosing vs the interval for besremi might make a difference in how you feel? I hope you are able to tolerate the interferon as it seems to provide mostly good results. I am also now on Jakafi, perhaps another option for you. Good luck!
I've been on Besremi a couple of times. Once for 4 months , then off for surgery - most recently, back on for 5 months. This last injection cycle has been spread out over the 5 months, starting with an injection 2 x's a month, moved to 1 x every 3 weeks, then 1 x a month. (trying to find a sweet spot for my blood counts)
I had GI issues for the first 2-3 injections each time I started the drug. It lasted for 24 or less hours, then subsided. Since I've moved to the 1 x a month, no GI issues. Could be I'm adjusting or maybe spreading it out has helped..not sure, but happy.
You didn't mention your dosage schedule, but maybe it can be spread out some to give your body some time to adjust. Not sure if that's a possibility for you, but maybe when you check with your MPN team, you could discuss. Best of luck..
I was on Peg and then Besremi for 5 years. Looking back now, I can't believe I stayed on for that long. But my numbers were great at the lowest dosage so...
I suffered from horrible IBS. Like interrupting the functioning of my life. Cramping, diarrhea, urgency. You can imagine the impact on social engagements, work, and every aspect of my life. Got off, and the issue was completely resolved. As a few have already stated, interferons are known drivers of GI issues. On Jakafi now.
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BESREMi 4th dose
GI bleeds
Switch from Besremi to Jakafi
