Hi gang!
I’m currently on 90mcg Pegasys weekly and responding well with platelets down to 480 on last count. Because side effects are an issue for me (mostly just soooo tired of feeling tired!) I’m wondering about reducing the dose to see if fatigue improves 🤔
Obviously will talk to my haematologist first, but I’m curious to know if anyone else has done the same? How did you know when to reduce your dose? Did reducing lessen the side effects/symptoms?
Thanks in advance 💚
Hi Sarah , I started on 90 every week and now on 45 every four weeks. It has taken me two years to reach normal levels but with excellent guidance from Haematologist I have felt good😊Some fatigue at first and was suffering with itching ,but as platelets decreased itching became less and also fatigue. I drink plenty of water!
Great to hear that you’re feeling good! How long were your platelets ‘normal’ for before you reduced your dose?
May21- down to every four weeks . It was progressive . Started peg10/18 once a week and platelets were937- last check 150 in May.They fluctuate slightly when I have app every 3 months but we are all unique !Hope it works for you . Good luck 😊
Hi Sarah, I started out on the lowest dose of 45mcg weekly and had a real problem with my liver or ALT numbers dramatically increasing but had no other symptoms. My Hematologist did not want to give up on the Pegasys as it was working with decreasing my numbers so he decreased the dose to 22.5 mcg which is a very low dose. I'm happy to report that after 5 weeks, my liver is happy and my platelets and white cells are slowly decreasing. I share this because we all have different bodies and respond to drugs like Pegasys differently. Apparently my body is very finnicky and I'm considered a "light weight" by my doctor.
😂 Everything I've read has said that anything under 45mcg is not therapeutic but I'm living proof that there are exceptions. That 90mcg dosage may be way to high for your system.
As you say, you’ll need to discuss with your haematologist but it sounds like you’re ready to start testing a reduced dose and/or extended interval between injections.
I started on 45mcg weekly then up to 90mcg weekly.
Once my counts were into normal range I then extended the interval from 7 to 10, then 14 then 28 days.
As my counts remained stable I then reduced from 90mcg to 60 then 45, which is where I now am as a maintenance dose of 45mcg every 4 weeks.
All of the above was agreed with my haematologist, with regular blood tests to monitor the effects of the changes.
I’m lucky that I have had no serious side effects from Pegasys but it makes sense that the lower the dose the less there should be.
Thanks for that Andy. I’ve got an appointment with haematologist this week to discuss
Hi Sarah, as has been said we all react differently to everything, especially interferon. I needed red count reduced as I have PV and it took a long time so I had regular venesections. Interferons are known to be slow acting. And at 90 and then 45 I had a lot of fatigue. I can be vague about lots of things in my PV journey but not the fatigue. I had to sit it out, nothing would shift it. I am now on 45 every 10 days. I tried to go 90 every 21 days which would have been elegant but the fatigue came back. So lets hope as your body adjusts and maybe you can extend the frequency the fatigue will lessen. Good luck. Mairead
Do you find that you’re less fatigued on your lower dose now Mairead?
Yes Sarah. It suits me. Can still be weary but it's not bad, a fraction of what it was. And my counts are stable TG and allele burdan low enough
ncbi.nlm.nih.gov/pmc/articl...
According to this compared clinical data of table 2, although this target is HBV patient, the fatigue is obvious lightly for ROPEG groups. Hope this information is worth for reference. Cheer up!! 3~4 months waiting for Besremi.
Hi HFrank - thanks for this link, it's very interesting. I was wondering why they were trialling Besremi for HepB given it's cost and restricted distribution and I notice it is from Taiwan University Hospital. The trial was 'supported by PharmaEssentia Corp', the original manufacturers of Besremi, so they probably got the drug for free to try to find new markets for it. Table 2 as you say is very interesting about comparative side effects. Best wishes.
Hi MPN Blog- As I know, the Besremi is develop for all diseases which could be treated by IFN including HCV/HBV/MPN and so on. But the HCV is completely solved by DAA, and HBV maybe focused for next. I could not more agree with Manouche, the dose of IFN is key factor for long term CR. How to balance effective treatment and side effect by IFN is very good point which is depended on tolerance. Best regard.
Thanks so much for the information HFrank it’s really helpful.
90mcg is definitely doing the job for me in terms of lowering platelets, and I guess it’s an easy experiment to reduce dose and see how platelets respond.
Getting the balance right is the tricky bit for sure, and that’s where I’m a little stuck.
You mentioned that dose of IFN is key factor in long term CR. Could you explain a little more please?
I’d love to know if a reduced dose has the same chance of delivering the longer term close to “remission” results I’m hoping for. Would certainly make the decision to opt in for side effects easier! I’m guessing that’s still impossible to answer but I’ll ask my haematologist to dust off her Crystal ball this week regardless 😂
My learning about MPN is from this paper. But there is no best IFN dose guideline for everybody.
In addition, there are does depended result for HBV studies and one of example is as below.
Clinical paper for PV
ashpublications.org/blood/a...
In Discussion section, they notice that:
"The chances of having molecular response increased in patients treated with higher doses of ropeginterferon alfa-2b"
Clinical paper for HBV
aasldpubs.onlinelibrary.wil...
FYI
Best regard.
onlinelibrary.wiley.com/doi...
Another compared study by ROPEG and PEGASYS was published at July 2021 which could be reference too. But again, the HCV patient are grouped and treated by two type IFN but PV one. I think this maybe due to PEGASYS was approved for HCV and HBV only so far and off-label used for MPN group and so on. The control arm group with off-label used drug in clinical trail design is rare and not suggested by FDA. So I can not found directly compared safety data for PV patients with ROPEG and PEGASYS in one study.
The safety summary in this paper is as table 3. As you can see the ROPEG showed longer effective half-life and superior safety profile than PEGASYS.
Hope this search is worth for you and best wish.
HiLike some others I started on 90 weekly and am now down to 45 every 3 weeks (over approx 2 year period)
Still suffer from fatigue sometimes but drinking plenty of water, taking exercise, trying to eat sensibly and resting when necessary all help.
Thing is, I’m not sure if we can shift some of the symptoms of ET (inc tiredness) regardless of medication. Important thing is to do all we can to keep them at a safe level. X
My doc started me on 45mcg (PEG is not measure in mg) and plans to leave me there for now. I am sure you will her from others that they are on a lower dose than 90mcg. I know one of our MPN friends who split the difference at 67mcg when she has adverse effects at 90mcg. Dose titration has to be determined on a case-by-case basis. I am sure you can work with your doc to figure out the right dose for you that balances adverse effects with the deired benefits.
Thanks for spotting the mg/mcg typo my friend, I’ve corrected to save confusion for anyone reading in future.
I was so glad to read that you’re feeling good on PEG 💚 I’m curious to hear whether your primary goal is to reduce counts or aim for molecular remission, and if we have any solid data yet to say that CMR is even meaningful in terms of long term outcomes and shorter term symptom reduction 🤔
My primary goal is to control symptoms. I was having both direct PV sx and issues with the chronic iron deficiency. Over time I am hoping to control the erythrocytosis and thrombocytosis while letting my iron levels come back up. The primary reason for the PEG is to improve quality of life, which is always my primary goal.
My goal structure that I base all decisions on is:1. Extend quality of life.
A. Protection of cognitive function is the single highest priority.
B. Protecting vision, hearing, other senses and mobility/physical abilities 2nd priority.
2. Extend length of life (only when QOL intact)
A. Philosophically – better to get less tx benefit and preserve QOL with any treatment.
B. My medical POAs have very specific instructions regarding my care and when to d/c all treatment.
I give this to all of my providers and require that all decisions be made based on this set of priorities. This is how the MPN Specialist and I decided to start PEG.
Having said that, I would certainly like to see my mutant allele burden reduced. I am at higher risk for progression due to also having the NF1 mutation. Reducing my risk of progression and possibly reducing MAB is a part of what I hope for. There is research indicating this is possible for some patients, but complete molecular remission is only achieved in a minority of patients. There has been some tentative research into whether those who achieve CMR can discontinue PEG and sustain the result. It was reported that some were able to sustain results for several years, but I think it is far to soon to conclude anything about this.
Here are a couple of relevant articles.
ncbi.nlm.nih.gov/pmc/articl...
All the best.
You’re certainly a man with a plan dear Hunter! That’s a fantastic way to communicate with providers, I’d imagine there’s also a peace of mind that comes with making those decisions. Thanks (as always) for your insight 💚
Hi Sarah, my dose has varied over the years, up and down! With platelets at 1.5 million and HCT at 0.50, I started Pegasys 90mcg/week almost 6 years ago, for one year. This caused some hair loss, very sore mouth and cotton wool spots in one eye, which were the worst side-effects for me. Some tiredness too. When platelets reached the 400s, I reduced to 45mcg/week which resolved most of the side-effects. Then when platelets dropped under 400, I reduced to 45mcg every 2 weeks, then every 3 weeks. But last year platelets started rising above 400 again. So I upped the frequency back to 45mcg every two weeks and now every week again as platelets are stubbornly around 475. Throughout my liver counts have been always slightly elevated but not enough to be of concern (scans show fatty liver). You could ask your haemo to reduce the dose to 45mcg/week to reduce the side effects. All the best to you, Susana
Thanks Susana! Great to hear that you felt better while you had the dose that suited you. Hopefully you’ll get back to the sweet spot soon 🤞🏻
I was on 45mcg weekly for over a year - numbers all perfectly in line and got there pretty early on. Out of nowhere about a month ago, my haem suggested going up to 90mcg weekly with the thought process that its closer to published studies which show some efficacy at reducing allele burdens. My wbc is rather low now and my ALT/AST is high. We’ll see what happens at my next blood check. Definitely much more fatigued in general and recovery from exercise takes much longer. Interesting that folks are spreading out their doses and/or reducing.
I agree with your haem. Studies suggest that the JAK2 mutational response is dose dependent. The « more is better » approach is not always true but seems to work with Pegasys on the allele burden.
Thanks Manouche - comforting to hear that his approach isnt way off!
Manouche do you know if there’s a minimum effective dose that impacts allele burden or is it just down to how each individual responds?
I don’t think anybody knows about the exact minimal dose necessary, but « It has been found that even low doses of IFNα were effective in targeting homozygous JAK2V617F HSCs, however, high doses (> 100 µg/week) were needed for heterozygous JAK2V617F HSCs. IFNα was least effective in targeting heterozygous CALR-mutated HSCs. »
mpn-hub.com/medical-informa...
Thanks for that!
There’s a leap of faith required to take short term pain for potential long term gain for sure. I’m following the same thought process as your haem at the moment, forever an optimist!
Hi SarahIt’s great that it has reduced your platelets so quickly. Fatigue is a pain isn’t it. I’m never sure if it’s the ET or the meds? Who knows, but like others have said, I do find the drinking plenty of water certainly helps though, for me, does not alleviate.
I started on 90 of peg interferon and was on that dose for about a year with steady and within range platelet levels (was about 1500 and went down to between 250-450). I then asked to drop the dose due to some side effects, which my haematologist agreed to. I dropped to 45 weekly and my platelet levels went up a little, they sit around around 450, but still within range and side effects are less.
I guess it’s about trying the lower dose once you and your haematologist feel confident it’s time.?
So glad to hear that you’ve found a good balance Sue 😊 It’s the fatigue and brain fog that’s the killer for me, badly impacting my ability to work and quality of life so I’m keen to explore any avenue that might help.
Between ET, PEG & potential long covid I’ve got a couple of things in the mix that could all be the culprit individually or in combination, I’ve spent a year being bounced around between specialists with no answers, so I figure a process of elimination is the next logical approach 🤷🏼♀️
Will be talking to my consultant this week about it for sure. So far she’s been reluctant to speculate or make decisions based on early research (eg: she doesn’t see value in measuring allele burden as she feels evidence is lacking to indicate that AB is meaningful or useful).
My only hesitation really is whether I’d potentially miss out on longer term benefits by taking a lower dose of PEG. Is that something you discussed with your haematologist?
Hi Sarah, sorry for late reply. No I haven't spoken to my consultant about the long term benefits/effects really. I did ask when I might be likely to go into remission by taking peg-int, my consultant smiled and said lets take it as it comes :-). I can be a 'quick-fix-solutions' person. I guess I'm more concerned about the effects of taking it long term, as Im not sure how much evidence there is around this. I believe it was a short term treatment for HepB. Anyway, its working for me for now. Still tired, and for me also, can impact on work. Anyway...... Take care Sarah.
Hi IrishSarah. This is becoming a more common question as more people are using Pegasys, and the answers seem very, very varied. My experience relating to your questions is that lower dose/larger time gap for the dose = less side effects. How did I know to reduce dose/frequency them? More than half the time I could barely function because of fatigue.
My case (PV dx 2017): I started on Pegasys 45 ug weekly and had terrible fatigue, but it had got my platelets in the normal range. So I moved to 45 ug every 2 weeks which had fewer side effects, but I was still quite fatigued. The bloods stayed stable except for Hct so I needed a venesection about twice a year (haem says this maybe needed regardless of PEG dose). I am now on 45 ug every 3 weeks and the fatigue is much reduced and much more manageable, though still there. Bloods are holding steady. Manouche mentioned that it's less than a theraputic dose and so may not have good impact on allele burden (AB). I've just had an AB test and I only have 2.1% lower AB after 12 months PEG, which is a bit disappointing. But so long as my platelets stay in normal range, I will continue on the low dose spaced out because of the impact on my quality of life - I was a walking zombie on 45 ug weekly. From what I've read experts don't know why some people get a reduced allele burden from PEG and others don't. If platelets go outside normal range, I would also take it a bit more often, but they're holding in normal range after about 4 months. Interesting to see 'ritaandscooter1' has halved the 45ug dose to 22.5. That's teeny. I might give that a go if needed, as I'm still very fatigued about 5 days out of every 3 weeks. I was nervous about playing around with the dose, but Pegasys is very long acting and quite forgiving and most of us are on monthly blood tests to check what is going on. I hope you can get some relief by changing the dose regime - worth a go. Best wishes.
Thanks for taking the time to share your experience MPNBlog. Gosh we really are a resilient bunch aren’t we?! I’d imagine we could take over the world if only we weren’t too exhausted 🤣
Hi, I’ve just come off hydroxi. Im also on 90 of Peg. I was only at 450 to start with. Ist week with meds and peg I reduced over 200. 2nd wrk a small reduction with 90 Peg and greatly reduced tablets. Early days for me at the moment. No tablets at all now just Peg. Next week hopefully should bring favourable results x
I’m amazed at how quickly you’ve responded Wyebird and absolutely delighted for you!
Definitely makes the effort feel worthwhile when you start seeing results x
Thank you. I’m trying not to be too excited with the results. My platelets and and meds to combat them,have risen almost 3 monthly over the last 6 years.Just hoping peg does the, trick.
What to expect at start of Pegasys?
Pegasys Side Effects
Pegasys and elevated ALT and Ferritin
