Besremi - Sore throat, swollen/bleeding gums

[jon1972]

Title says it all. These are some of the more serious side effects I'm having from Besremi. Symptoms follow injection by roughly 5-7 days. Please post if you have these issues as I'd like to confirm this as a side effect. I've been having this issue since shortly after my first injection on 1/29 of this year. Thought it had gone away over the past month but it's back again. Severe throat pain (hard to swallow) and bleeding/swollen gums.

[EPguy]

I have not had those so far. But it is in the "uncommon side effects" list:

<<..., sore throat...painful swallowing, bleeding gums>>

ema.europa.eu/en/documents/...

They don't say whether it's an urgent issue, but it seems well worth discussing with your Dr. I see your current dose is 375 to control HCT. That is relatively high and as we know effects are dose related. Were you ok with PEG?

I've had some issues with this one, but so far nothing really bad, I've another eye doc appt next week:

<<if you have changes in your vision − you must tell your doctor and have an immediate eye

examination>>

[jon1972 in reply to EPguy]

I've had worse eye issues since starting peg and now Besremi but they eye docs say they dont see anything concerning. I've been on 400mcg of Besremi the last 3 doses and about to go to 450. Going for bust I guess. 400 is controlling slightly better than 375, but not quite there yet. Peg had other side effects. It's hard to say which is worse. I had pretty bad GI upset and lower back pain with 135mcg of Peg. I have been considering switching, but I'm waiting to see if Besremi actually controls my counts since I havent found an effective dose yet.

[EPguy in reply to jon1972]

What eye symptoms did you have? My 1st one was extra light sensitive one night of my early doses (at only 50-75mcg) That got better but last week I had blood shot left eye, fuzzy picture, and pain adjusting to light. Pain was only for 1 day, and others are getting better now. But all is new since Bes.

I've had CHR on 75mcg, but Dr wants to go to 200, we will be discussing this more. Maybe I will need a higher dose later. 450 is almost the whole "bottle". But it is within the clinical trial experience so not unusual.

But if HCT is driving the dose, and side effects are growing, is it worth some phlbs to use a lower one? What does Dr think?

We really need the new Rusfertide.

[jon1972]

My specialist has been very unhelpful due to a rogue nurse running the show at the Cleveland Clinic unfortunately. I'm pretty much on my own, in the process of looking for another specialist. The main eye symptoms have been terrible far sightedness and floaters. They don't see anything physically wrong with my eyes though.

[EPguy in reply to jon1972]

That is surprising problem at what is supposed to be a top institution.

Those eye symptoms suddenly started with INF, correct? Usually any change sudden and large is important. But if your eye Dr is ok with it, that is reassuring. I know some floaters is normal, looking at the sky makes them show real easily.

The larger but very rare risk with INF is retina problems (retinopathy) I've learned that word because, upon any eye issues on INF, we want regular eye exams to be sure it's not happening. It can be bright spots, dark areas, flashes, or nothing apparent at all.

[Meatloaf9 in reply to jon1972]

Hi Jon, I also go to the cleveland cllinic. Which Dr do you see. I see Dr Gerds. He has always been very attentive. He always answers my messages in a short time. Would be very interested in your experiences. Best to you.

[jon1972]

They didn't see any retina issues at all. I do think the floaters are caused by the IFN though. My vision getting worse could just be age since the process starts in our 40's apparently.

[gvibes in reply to jon1972]

Hi jon1972. At the higher doses of pegasys (90 and 135), I had occasional odd visual effects including blurred vision and some strange almost vertigo loss of depth perception. On lower levels not so much. Good luck. Steve

[hunter5582]

I had not heard of this adverse effect (pharyngitis) from Besremi but apparently it is known

rxlist.com/besremi-drug.htm...

Pharyngitis is usually caused by viral infections, bacterial infections, irritants, trauma, toxins, or injury to the throat area. Aside from bleeding gums and fever, you may also experience a runny nose, cough, sneezing, hoarseness, earaches, or body aches.

coastalperiosurgery.com/blo....

This is definitely worth follow up with a MPN Specialist. Please do let us know what you learn and how you get on.

[jon1972 in reply to hunter5582]

Thank you for the links hunter. I see fatigue is quite common with Besremi as well, which is something I've been struggling bad with over the past several months. I've been trying to rule out any other causes to no avail.

[PhysAssist in reply to jon1972]

BTW, fatigue is also one of the more common symptoms of PV:hopkinsmedicine.org/health/...

[EPguy in reply to jon1972]

I've had a clear correlation to being actually weaker not just fatigued, since starting Bes. On Hu I had plenty of issues but not that one. I'm still able to do my intense strength exercises but it's not the same.

Pre-Bes I was able to run around like a youngster, if somewhat less, but since starting Bes no more running or scooter skating. My recent camping trips have made this extra clear. This is why I hope to keep the lowest dose. I don't think this effect improves much over time other than maybe via dose changes.

This list shows 47% suffered fatigue which " Includes asthenia (weakness), malaise, and fatigue."

rxlist.com/besremi-side-eff...

So we are are seemingly in this 47%.

I believe the "influenza like illness" (59%) does usually get better, I had it only briefly at the start and others here have reported similar.

[PhysAssist in reply to hunter5582]

Also: Respiratory d/o's:

Uncommon: pneumonitis, cough, epistaxis, throat irritation

Gastrointestinal d/o's:

Common: diarrhoea, nausea, abdominal pain, constipation, abdominal distension, dry mouth

Uncommon: gastritis, abdominal wall disorder, flatulence, frequent

bowel movements, odynophagia, gingival bleeding

Not known: tooth disorders, periodontal disease

From: ema.europa.eu/en/documents/...

Pages 8-9

[hunter5582]

The difficulty in sorting out the cause of fatigue is that is can come from the Besremi, the MPN, or from something else. Timing of when the issue started can be the only clue. Hope you get it all sorted ASAP.