I've been on it for 3 months now. From starting dose of 50mcg for HU transition my dose last week was ~110.
-That evening I had high sensitivity to light, looking at the overhead kitchen light was nearly like looking at the sun. Even the white sink was painful to look at. This was just for that night.
-Has any member experienced any temporary (or long) change in this way?
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Eyes and INF are known. See Euro warnings list at the end of this post. I fit the "other eye symptoms" in there. I've seen elsewhere (I think a UK label) an extreme warning on light sensitive on INF, but in combo with certain other conditions.
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I made appt with my eye Dr. I also asked my Hem whether this result was normal, his one word answer was "no". So I worriedly moved the eye Dr appt up to today. I had an eye check last year for general eye pain, no issues then but we now had a reference point. Good news is my retina is still fine so I can keep the INF going.
A key INF eye hazard is lesions and "cotton wool spots". Dr also says these conditions are easily fixable these days. Most of these complications show up by 12 weeks on INF (from report below), I'm right there, as are many members on Bes. I have follow up eye appt in 3 months.
Eye Dr says the inflammation is likely the cause of the light sensitive, INF does make the body on fire by design. He had never heard of INF vs eyes, so he looked into it during my visit. He found this report (as is common it's for HepC):
In here, this summary says it well (there's also a hidden bonus comparing PegIntron to PEG, I'll post separately)
<<Retinopathy was asymptomatic in most of the affected patients (7/9; 77.77%) and reversible, (I think it says the conditions improved while continuing INF) cotton wool spots was the major associated sign. Patients with older age, DM (diabetes) and or HTN, (blood pressure) and non-responders to antiviral therapy (this was for HepC) were associated with more severe retinopathy.>>
Some early reports from Japan have <<Higher frequencies are usually found in Japan where values of more than 50% are common>> I suspect doses were huge as it was early days for INF from my recollection.
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-My take is esp if you have diabetes or hi blood pressure (even well controlled according to this study) you're at increased risk for retinopathy and esp if you notice any new eye issues, it may be good to consult an eye specialist. Age was another factor.
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-I'm debating my next dose, Hem wants to keep it up. I've had plenty of flu like and GI since that 110mcg, but compared to malaise, I'll take those esp if they should get better over time as we see on the forum and Dr says.
(we're taking a rare vacation next week, so a lower dose for next one might allow me to enjoy it more)
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-Another notable, I asked my Hem about weight vs INF dose, he said it's tolerance based, which is a sort of non-answer since then I ask myself is tolerance weight correlated? The report above has another hidden item on PegIntron if this area, it's dosed on weight while PEG is not. <<PEG IFN-α 2a was 180 mcg (subcutaneously) every week. The mean dose of PEG IFN-α 2b (PegIntron) was 1.5 mcg/kg (subcutaneously) every week.>> Besremi shares with Intron the -2b INF version.
That 180 PEG is very high for MPNs, so more eye issues in this study might be expected.
For weight/dose: I weigh 130lbs, US avg male is 200. So if INF were weight based as it is for Intron, my 110mcg Bes would require 170mcg for equivalence in the avg US male. Likewise a 270lb male (same weight diff the other way) would need 230mcg. Huge dose diffs if weight is relevant. Are some of us getting too much and others not enough on this basis?
-Have any members noticed any relation of your dose tolerance to weight? For example are some members who tolerate only lower dosing tending toward lighter weight than avg? (and vice versa)
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As always comments welcome on what makes sense here and what doesn't.
Severe eye disorders such as retinopathy, retinal haemorrhage, retinal exudates, retinal detachment and retinal artery or vein occlusion which may result in blindness have been observed rarely in patients treated with interferon alfa (see section 4.8). Patients should have eye examinations before and during
ropeginterferon alfa-2b therapy, specifically in those patients with retinopathy associated disease such as diabetes mellitus or hypertension. Any patient reporting a decrease or loss of vision or reporting other eye symptoms should have an immediate eye examination. Discontinuation of ropeginterferon
alfa-2b should be considered in patients who develop new or worsening eye disorders>>
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It's so difficult to get the right balance isn't it. Glad you have eye appointment today. Let us know what's said.
Re. Weight and dose
. My immediate thought when I decided to take HU was I'm only 5 ft. And not plump so how can I need same dose as someone much bigger . Doesn't make sense .. so I m taking every other day instead of every .
. Hopefully you can have lower dose for your vacation if it will help lesen side effects . And not have negative consequences ..
Your HU dosing does support the weight concept. This thread at best will give us a small trend in the idea, but good info. I also responded well to HU at just over 500/day.
Sorry I buried the result of my eye exam, it's there but I was trying to point to general helping info.
Dr said no concerns at all in the retina, still clean. It requires dilation for the exam. He did find a very minor cataract, it was same as a year ago. No action required. I asked and he said it's just from age, so no INF connection per Dr and my other research.
I still have minor pains in the eyes which was my reason for visit last year. Might be Covid long haul issue, or who knows.
Good to hear news of your appointment . Sounds positive Oh, I thought it made sense size and weight relevant . Thanks for info. Still happy with every other day if I continue to lower platelets.
Of note is that for some conditions, HU is weight adjusted. Weight adjusted for ET, but not for PV.
Adult Dosing .
Dosage forms: CAP: 500 mg
Special Note
[uses, dosing may vary]
Info: refer to institution protocols and pkg insert prior to prescribing for uses, concomitant meds to mitigate toxicity, and dosing incl. toxicity-related dose adjustments; use lower of IBW or ABW for dose calculations
CML, refractory
[individualize dose PO qd]
Start: 15 mg/kg/dose PO qd
squamous cell head/neck CA, XRT adjunct
[500-1000 mg PO q12h x11 doses per cycle]
Start: approx. 14h prior to initiation of XRT each cycle
*sickle cell dz
[15-35 mg/kg/dose PO qd]
Start: 15 mg/kg/dose PO qd; Max: 35 mg/kg/day; Info: titrate by 5 mg/kg/day q12wk
*polycythemia vera
[500-1500 mg PO qd]
Info: titrate to control Hct and platelet count
*thrombocythemia, essential
[15 mg/kg/dose PO qd]
Info: titrate to control platelets and maintain WBC count
renal dosing
[adjust dose amount]
CrCl <60: decr. usual dose by 50%
HD: decr. usual dose by 50%, on dialysis days admin. after dialysis; no supplement; PD: decr. usual dose by 50%; no supplement
great link. It says for PV <<Initially, 15–20 mg/kg daily.>> I think this is the relevant idea, if we set the -start- to our weight, the later titration will go more smoothly and less immediate back tracking may be needed.
In my case, this would be ~1000/day, which in fact was my starting dose. I did need to reduce 4 months later.
I don't se why INF cannot be similar, esp with precedent on the Peg-Intron.
it is interesting to use weight to calculate Interferon dosage. Would be more accurate to adjust dosage based on the blood measurement response? Different people have different response to interferon even they may have similar body weight. I am 122lb and take 90mcg/wk, but find my WBC and RBC all drop too much along with palettes # (from 850 to 275 now) . I am cutting dosage to 60mcg/2wks now, hope it will bring my WBC and RBC back to normal range while P # is still under 400 or 350ish.
You're correct we get our INF dosing from blood counts. And there may be solid data supporting that method. What got my fresh attn on wt vs dose is the use of weight for PegIntron in that study. So at least for some indications and INF types, weight is used. Why not for PEG or Bes? Why not for us?
Could it be that lighter patients should be more careful in up titration? Take it slower? We do see that general idea often here absent the weight element.
Your blood counts and weight do support the weight idea, but as above this info is more for background reference for now.
Our bodies react differently. I never got weighed before being put on hu, anagrelide or Peg. Blood counts I think are the most important although someone over weight has a bigger body mass thus needs more calories to sustain weight why not meds also🥴. That’s food for thought! Haha pardon the pun!
I go round and in circles here. Surely not. They, I think count the cells that are put on a film- micro amount. It would be a cross section. That would be the same no matter what size you are. 🥴
I've had eye problems since starting Pegasys back in 2019. Specifically dryness and floaters, those squigly lines you see in your eyes while in bright light. The dryness while on Peg would be primarily at night, while now with Besremi it's more all the time. Bes seems to be more of a drying agent overall as I've mentioned in other posts. It dries my skin terribly too causing it to thicken up sort of like calluses on my hands. My solution is to use moisturizer for skin and eye drops and spray for my eyes. I highly recommend Natures Tears eye mist, available via Walgreens. It's great for immediate relief when I wake up at night with severe dryness.
I spoke to my specialist yesterday (Gerds) and he said he knew about dry eye issues but was not aware of eye disease, which the Besremi nurses told me is reported in some. I did not get specifics on what "eye disease" is though. The floaters and how quickly my eyesight has deteriorated on Inf in general is pretty concerning to me though. Your post inspired me to make an appt for a medical eye check on Monday.
I do see dryness in the lists and it seems more common. I suspect my Hem would have also answered "yes" to whether dryness was normal as yours did.
Some minor floaters are normal according to my eye dr, and I have always seen them when looking at the the sky. But my lesson from here is anything in your eye that is new or worse upon starting/increasing INF needs to be checked. Increased floaters are a specific category of concern he said, along with any change to vision.
I think we can add to the MPN world's knowledge right here by keeping up with our eye progress on INF.
I use a gel ‘viscose tears’ I’m in the UK so I get it on prescription once or twice a day is suffice unless in a really hot climate. You don’t wait for dryness to happen use it all the time. Apparently my optician said that dry eyes lead to ulcers on the eye.
On the dosage / weight thing, I'm 200lbs and I'm upping my Bes dose to 300mcg this weekend. I've been on 250mcg for the past month and it's not even phasing my HCT. Homozygous Jak2 according to bone marrow biopsy, apparently the more difficult mutation to control
You're at the avg US weight, so a higher dose than mine is consistent. But as above this is not actionable data, just good info for now.
You may have seen some posts on Homozy Jak2. It tends to stronger MPN as you say, but it also responds for allele, on average, very well to INF. If you match this trend your allele should go down nicely.
In prior posts you said Bes may not be working as well for you as PEG did. Is that still your feeling?
Yep, still no joy with Bes, but I'll push it as far as I can before switching back to Peg. If it turns out side effects stop me before I can get to a therapeutic dose, then that will be the deciding factor. I was having a touch of colitis-like symptoms when I 1st upped my dose to 250. My body seems to adapt to side effects by the 2nd dose after upping and hopefully that pattern stays consistent. I thought it was interesting that you were at 110mcg. You must be using a diabetic syringe and pulling off the pen they give you with the Bes like I do. With respect to the homozy and allele, yes, my allele burden responds well to Inf. I went from ~80% to ~6-8% after <6 months on Peg. After about 2 years it was still in that same range. So while it's not eradicating the mutant clones, it's at least keeping them pretty low. Unfortunately homozy is also more likely to progress to a AML or MF, but I have no idea about progression likelihood with homozy patients that are on Inf.
Good to hear that 2nd dose at a level gets better for you. I actually use the syringe that comes with it. Needle is a "30 gauge 1/2inch". Very thin, but still it requires attention to get things set right.
Great results on the allele. It's nice too to match clinical data experience. There have been posts on reports re reduced risks for "having" allele below 50%. But our discussions included whether "getting" allele below that is equally beneficial.
One of my favorite reports discussed in the Long term INF Results post suggests there will be benefits to the "getting".
I don't expect dramatic allele results, having a starting point less than 20%. I do hope for symptom reduction.
I posted here: (healthunlocked.com/mpnvoice... about the uptick in migraine frequency since starting Besremi. I don't recall ever having concurrent streaks of migraines as I'm now experiencing. Your light sensitivity is very interesting (and I'm sorry!) as that is one of my triggers--bright sunlight, overcast, and flashing lights. My eyes feel funny and sometimes, looking at the computer monitor makes my eyes blurry.
My HEM and the cancer center pharmacist doesn't think the migraines are related to Besremi since I've been using it since January 28th.
My experience with having a migraine brain is that any big changes can cascade into a migraine; sleep, diet, stress, etc. Besremi must be triggering the migraines which start with the squiggly lines in one eye. I'm doing all my old prevention task: medication, no alcohol, consistent sleep, etc.
I started CGRP inhibitors and that has helped, but the streak is back. I upped my dose of Besremi to 125 on April 22. I seem to be okay the first week after the dose, but the second week is when the migraines start.
In the prior post you noted the nurtek. So that is no longer working, that is aggravating. Like you, I don't want something to force me to stop INF.
I have migraine history also, including similar triggers and beautiful hallucinations in one extreme event. I also have an eye nerve issue that dis-coordinates the eyes when I read since my teens. It's not a big deal for me but it does make the PC screen move around sometimes.
But all the above is different from the brightness I had, it was strange.
I agree on the 1 week delay, I get the effects 1 week after the dose. Did your migraines change with the increased dose? As in my top post, I think 125 for me would make trouble right now, but that has no bearing on others' dosing.
I agree it's good for you to be sure it's just the migraines affecting your eyes.
Well, Emgality and Nurtec were working, but not this week. And, neither has made me completely migraine free. I did increase my dose of Besremi to 125 on the last dose on April 22. That could be the shift. Who knows, right? It's all like a puzzle.
I sure have not heard of light sensitivity (photophobia) being associated with Besremi. When I did take a quick look, I saw references to a correlation with COVID and dry eye. And migraine of course. I am assuming the doc would have told you if your iris was unusually dilated, so thinking something retina related would make sense. That or something neurological (e.g. migraine).
These symptoms are really tricky to figure out. Hard to say what is what sometimes. If it does not resolve, suggest consulting with a Neuro-ophthalmologist. This may be something a bit out of that ilk if everything else is ruled out.
Agree photophobia (thanks for the new word) is not on the lists. Here is another Rx list from UK, select excerpt here on retina risks for Bes. Retina does keep showing up:
<<Uncommon side effects (may affect up to 1 in 100 people):
- loss of vision which may be caused by bleeding in the retina (the retina is the light-sensitive
layer in the eye), or by build-up of fat in or under the retina
Rare side effects (may affect up to 1 in 1,000 people):
- loss of vision which may be caused by damage to the retina (such as obstruction of the blood vessels in the eye) or the optic nerve
Very rare side effects (may affect up to 1 in 10,000 people):
For now as long as my retina is ok, I'm not worried. As above, I've had a minor neuro-eye issue, so at least that part is a familiar thing, but I will monitor for any new ones, thanks for the heads up on the neuro.
Actually did not know there was such a thing as a Neuro-ophthalmologist until I needed to see one. Now one of the many "ologists" I see. They do have a very useful specialty for some very specific issues.
Visual impairment is very scary. I had my own experience with the tumor in my occipital lobe. The tumor and the surgery did affect my vision. Not an experience I would care to repeat. Glad that I have not had any visual issues with Besremi. One of my "oligists" is a retina specialist. I see this doc due to hx of retina issues. Just saw that doc and all is well.
I missed one data point that got me to act last week; my BP went to 165/107 briefly. It's usually ok since bloods were controlled, and was more consistent since starting Bes, no longer crashing at night. But this part my Hem said is normal break-in for INF. Definitely felt broken, my hubby's 70th B'day I was down.
Bizarre but l have similar experiences on PEG. Blurry Vision, light sensitivity and increase in floaters particularly in the mornings. Having read the scary warnings on drug.com and other info sights l saw two eye specialists. Lengthy Investigation with the second doctor who took her time and did some checking on ET and Peg. She reassured me that all is well. But l will be getting my eyes checked annually. I have experienced such a variety of side effects on PEG, most have vanished over time but even now occasionally l get chills or bone pain,migraines usually the week following injections. I am on 90 every fortnight
Increased floaters seem to be important to my eye Dr, as is any vision change. It's good you're getting eye care and all is ok.
Are your light sensitivity and other eye issues continuing thru each day of the two weeks between doses? Mine was intense but only that night.
Good to hear your other effects have softened. So the effects are mostly the next week, I had thought there could be a pattern of faster effect with PEG vs Bes, but your experience does not point that way.
Migraines do seem relatively common here with INF. No fun for sure.
My next eye check will be in three months, I fine to be conservative here as the INF stabilizes.
Floaters were pretty intense for several weeks but have decreased over the last two months. I was a little anxious about damage to my eyes.,It was only ever in the mornings when l woke up. Maybe it’s age related. My PEG side effects never occurred in the first few days after injections. Always 4/5 days later. Shin and hip pain was the worst of it.Paracetamol helped a lot. It would perhaps last 2,days. However It is much improved. Now very occasionally and not intense. I have also traveled with PEG and managed it with no difficulty.
More assurance, your eye Dr is ok with it and it's getting better.
I wasn't a little anxious, more like freaked, esp with my Hem's answer of "no". And then my husband gets stressed too. See also BP discussion here.
Age is a great default for all that's unexplained.
I recall your discussions of traveling with PEG, I see it worked out. We're taking rare a trip in our micro RV soon and I hope I can put the INF in the propane fridge. I've installed a remote temp gauge in it. But the trip should land between doses, so I can test the temps before really trying it. Since Dx I can't drive the long hours I used to.
I also get a lot of floaters. I have for quite some time. In my case, cause by posterior vitreous detachments. I have has two retinal tears that required surgery. (about 30 years ago). I occasionally get flashers as well. That is why I am followed by a retinal specialist. I do pay close attention to all retinal phenomena. Luckily, no change since starting on the IFNs.
That is correct. I am also severely nearsighted. Has to do with the more oblong shape of the eyeball. life certainly can be interesting at times! I would still like to be more boring.
I think one clear result here is if one is nearsighted, and/or has diabetes, hi blood pressure history, eye care is a very good idea while on INF, and in general.
I agree on boring health, that is a feature not a bug in life.
At my Dx it peaked at 170ish/110. But since starting MPN meds it was controlled but high at day and crash at night. for example 138/89 day, and once to 83/53 at night.
After starting Bes it was very boring and ordinary, till last week. I'm back to crash at night as I increased the BP meds. But it should normalize soon enough on my usual tiny BP dose.
I believe extra hi BP can build on itself from the stress it causes.
I had to have an eye test prior to starting Peg. The optician felt he was working in the dark as I couldn’t really say what the significance was. Now I know it’s the retina, thanks.
EP Guy, is trying out Pegasys an option for you? If so, that might be something to consider. From reading many posts on various MPN forums it's becoming clear to me that about half of former Pegasys users who switched to Besremi have found the side effects of Besremi much more pronounced and uncomfortable without any better control of blood counts, myself included. Example: I experienced extra intense dry eye, skin and hair symptoms on Besremi as compared to Pegasys.
I recall your posts on Bes troubles. Are you back on PEG now?
We have seen here some better on Bes, some on PEG. You're seeing about even split. Is it possible Bes could get better after the typical break in period? (maybe PEG history gives no head start for that)
But one can ask why bother with that if PEG is working? I've posted before, PEG uses a different INF molecule than Bes, separate from the pegylation method. My Dr says no effect, but we're only now starting to see real life data.
I think, other than the light sensitive, I'm having typical INF break in. So far no skin/hair issues, esp not like on HU. And I had a string of days without malaise after the higher Bes dose, very rare. Today it's back some unfortunately. I think my stressful last night didn't help.
I'm just saying to not give up entirely on interferon if Besremi turns out to be intolerable because Pegasys is a substantially different drug. Yes I'm back on Pegasys and feel great again.
Agree, and thanks for the encouragement. A top worry I had was need to quit if the eye thing were serious. I have in fact been thinking about how PEG might work out from yours and others' posts. Nice to gave option B, I don't want to revert to option C, HU if I can help it. More likely I would try Rux in that worst case as my Dr wants me to.
Your INF history is really informative: 1 - PEG-feel good, 2- Bes - feel bad, 3 - PEG feel good. Very strong correlation. Your Bes dose of 150 would likely knock me flat at this stage, we know getting the dose right is really hard.
In general, maybe those doing well on PEG might ask Dr whether switching to Bes is a priority.
I love sun bathing, I’ve never been able to cope with intense rays of the sun though. I love lazing under a tree and feeling the dabbled rays on my body then just sloping into a pool or the seA. To cool off. I always wear factor 30 on my face and arms 15 on legs, sun glasses and a wide brimmed hat.
Great post as always. I am having eye irritation but didn’t think anything about because pollen count is high here and I had problems before Besremi. Going to see eye doctor next week and tell him about Besremi and will update. He previously indicated that PV patients already tend to have eye problems so tough to distinguish between PV issues and Besremi AE on this issue other than trying to notice timing of problems relative to administering the drug I guess. My issues in the past were more in the form of eye infections rather than retina issues so I want to find out whether this is a different problem.
For me the timing was a strong indicator, that same night an all new effect started. But it's not always so clear.
Some of the retina problems can be without symptoms from what I can find, but no less a priority to know about. With your relatively high dose close checking as you plan to seems a good idea.
Very sorry, that I missed so much of the discussion and come up with a reply that late, I have to take a closer look on what is going on here.
With respect to the vision / eye related problems:
I think it's notable, that a lot of the side effects given in the Besremi manual were seen with relatively high dosage, compared to what a lot of people in Germany / Austria take - at least that is what I can tell, with respect to my experience.
Moreover it is highly recommended to have your eyes checked PRIOR to starting Besremi and then once a year - just to be on the save side.
I don't have experience with Peg so far, but all your experience helps a great deal, as I was thinking about switching from Besremi to Peg, because of my low neutrophile counts - maybe that changes after switiching IDK.
Anyhow, thanks all for your contributions to the community.
Agree on the dosing diffs among many members vs the trials. It may affect AE's and maybe the deeper benefits too. I think that's why some Drs want to go for max tolerated doses.
You're right some Bes labels specifically suggest pre-checking eyes. I happened to last year, but can't claim it was all planned. So now I have is a baseline to refer.
Is there possibility of better neut balance with PEG? I have not seen that info, could be good to know if so.
NEUT has hovered just above below reference range both on PEG and Besremi.
Most recent read on 04/25/22 NEUT = 1.69. (just above reference range).
In my case, IFNs significantly reduce NEUTs. No difference in Pegasys and Besremi that I can see. Note that lymphopenia is even more pronounced on both IFNs.
Leukopenia is a known issue with the IFNs. Thus far, the benefits outweigh the risks. Providing NEUT>1.0 then it is considered worth it.
Thanks for your inputs hunter and EPguy, that's good to know. I assumed so with respect to the NEUT numbers, but wasn't sure. In the beginning my NEUT got down to >1.0, when taking 50µg every two weeks. Now I'm taking 60µg every three weeks and my NEUT are stable at about 1.4, still not high but acceptable.
Sounds like you have found the right balance for you. That is why individualized care is so important. We are each different in how out MPN presents and how we respond to treatment.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
FDA Approves Ropeginterferon Alfa-2b-njft for Polycythemia Vera
