On the Facebook MPN Interferon forum today, a member posted that he had been on Peg Interferon 45 every two weeks for two years but was having some problems, so was considering taking a break from it.
I replied that, if the Peg was actually working for him, then maybe he should consider a lower dose, rather than actually stopping.
However, several people then contributed, variously, that they had been told Peg would not be effective at less than 45 per dose and that it would be more effective to reduce the frequency.
I thought I remembered some people posting in this group that they were on lower doses. Was this just starting very low to get adjusted to the side effects first, or are people finding it effective below 45?
I should appreciate input on this, as I am currently on 45 every 10 days, which has been effectively bringing my platelets down over the last 9 months, in preparation for my hip replacement (quite soon, now).
I had originally envisaged I would stop the Peg once I had recovered from the surgery, but now I know that I am not necessarily ET but may be veering towards PV, I have been reflecting on the possibility of gradually reducing to a maintenance dose of, say, 30 every 2 weeks, if that would keep my platelets within range.
It is already agreed that, once the surgery is behind me, we will look into allele burden, as that has never been checked. I know haematocrit is still okay.
Up until hearing that input earlier, my thinking had been that reducing frequency would be less effective than reducing dose because Peg doesn't stay active in the body that long.
I did try looking for research on this topic but was only able to find papers about reducing the standard hepatitis 180 dose for the elderly. But Professor Google was probably not my best starting point.
My friends, I should really appreciate any insights you may have on the dose/frequency balance. Maybe personal experience. Maybe research.
I shall be very grateful.
Warmly, Daisy
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DottyDaisy
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Hi DottyDaisy I have ET and am Jak2+ and I live in Australia. I’ve been on Pegasys for 4 years and whilst I’ve had some side effects to manage, my blood test results have been nothing short of spectacular, so Peg has definitely worked for me. My results are all within range and I have essentially a normal film with each blood test. Apart for the first 4 weeks when I was on 45 mcg’s, I’ve been on 90 mcg’s. Injecting weekly for the first18 months was a trial as I as managing fatigue as my main side effect. I was prepared to maintain 90 mcg’s but in discussion with my haematologist I requested that I move to fortnightly injections as a means to have more fatigue free days between injections. Over time this process has continued where I moved to 3 weekly injections and a month ago I’m now injecting monthly. Throughout I’ve maintained the 90 mcg’s each injection. My haematologist and I are monitoring my blood results at the moment re 4 weekly injections but I have to say pushing out the time between injections has definitely given me a much better quality of life. Yes I still have to manage the side effects particularly in injection week, but I have much more ‘normal’ days.
Yeah, we took a cautious approach as I initially transitioned from HU to peg. Hence the initial stint on weekly Peg. But it’s taken another 2.5 years to get to my goal of monthly injections. I just hope that my blood test results don’t change. Time will tell.
So then, Mark, thank you. It seems I'm pretty lucky to get platelets from 1000 to 370 over 9 months, never going above 45 mcg. I shall be optimistic that I too can get down to every four weeks (in daisyspeak, that's every other black bin day) and ultimately enjoy enough low fatigue days for some more amazing adventures in Harriet the Happy Camper.
Hi DD. You’ve done well to get your platelets down to 370. Good luck with getting your hip done. Once that is out of the way things should be much easier for you to manage. CheersMark
I have occasionally hear of people using a dose lower than 45mcg, but it is not common. I do think that we are all different in how we respond to PEG or any other medication. Suggest the best thing to do is to review your questions with a MPN Specialist very familiar with managing MPN patients on PEG. Please do let us know what you learn.
Wishing you success with your heip surgery. Please let us know how that goes as well.
For the last 6 months or so I now take a bit less than 45 ug Peg monthly. (Originally I took 45 ug weekly). If I'm feeling awful I take less - about 3/4 of that or 33 ug. If I feel ok I might take the full 45ug. Like Kinsale this is mostly to reduce the fatigue burden and get more 'normal' days between injections. Counts are staying in the normal range but I need about 3 venesections/year to control Hct. I was told that a dose that low and at that frequency was 'non-theraputic'. But it depends on your goals. I don't see it as a cure. I don't tolerate HU, so I want control of counts with the least side effects. All the best and I hope you get some answers.
I am so grateful that you have all taken time to to reply to me.
So from what you're saying it does seem that I should not be worrying about a lower frequency at the same dose. It would certainly suit me better because trying to remember every 10 days has been an absolute nightmare for me. When I was doing once every two weeks I did it on bin day and since bin day alternates between green bins and black bins it was very easy to remember that I stabbed myself every black bin day morning.
What you say about fatigue is very interesting. I had certainly noticed that over the last few months I have been spending a lot more time in bed. A 3-day trip to London for my Guy's appointment left me in bed for the following 4 days and similarly a four day visit from my granddaughter much as I was so totally, utterly delighted to have her did leave me in bed for the following 3 days. (I wouldn't have missed it for Anything.) I had completely put this increased fatigue down to the worsening state of my hip. I assumed that the effort of keeping upright and mobile was wearing me out.
I shan't know until I am recovered from my hip surgery if the fatigue is down to the hip the Peg or I suppose more likely a combination of both.
My next consultation is in July and I hope by then I will have a better picture to work with.
My post-op plan is to do more gardening, have more campervan adventures, do more vegan cooking and eating out, whilst watching progression risks and getting bloods as close to normal range as possible.
Hi Technology can help. Something like the google calendar can be set up for every 10 day injections including reminders emailed. It’s easy to use. Best wishes.
Oh Gvibes thank you so much for your thoughtful suggestion and yes, I did try that. In fact I do use Google calendar for all sorts. Both emails and notifications. The problem is totally me, not the technology. Despite my adventurous soul, for some things I am very set in my ways.Every 10 days exactly was never going to work because it would be a different day of the week every time so I decided that setting it for a double rolling 21 day schedule might be a good compromise. Every third Tuesday and every third Friday. I did try to make it work I really did, but it just didn't sit well with me. It seemed to be taking over my life.
I am back to stabbing on black binbag days. When I think about gathering stuff together for Friday morning, I think about upping my water intake in preparation.
When the alarm goes off, I take my Peg out of the fridge, and take the black bag down to the gate. Come back and down another half litre of water. Immediately refill my beer glass. When I have finished the injection, I down that too. My body soon tells me if I've not been drinking enough water over the scheduled quiet weekend. Dry mouth, thirst, slight headache. After the weekend I'm back on about 1½ litres a day and I have ten clear days not thinking about medication at all. Just enjoying my adventures. The next one is my hip surgery. Only 11 days away if all goes to plan.
Then it'll be a race against time to get myself mobile and able to drive, in order to enjoy the rest of the summer with Harriet the Happy Camper. There's a club rally in the Autumn I don't want to miss.
Whats a binbag day?? Thursday is my day - I'm very aware that this is the inject day. It has become a ritual. Late afternoon. I numb myself with a little lidocaine (i'm a bit of a wimp). I have a calendar which shows where to jab (R1, R2,R3, L1,L2, L3). Then take out the vial, fill the syringe, pretend I am an addict, and eventually convince myself to stick my belly. I don't have immediate physical effects - I usually have a beer afterwards as a reward. Not sure I am following the rules but.....
Bins? Well it's the trash. The garbage. We get a black bin for the stuff that is going to landfill and a green one for the re-cyling. The two get emptied on alternate weeks. Into the garbage truck???? I have so very little for landfill that I don't use the black bin at all. I keep it to make leaf mould for my garden compost. So what little I have goes in a black plastic sack instead, that I hang over the front gate.So yes, it looks as tho we both have our rituals. My jabs have numbers. My calendar tells me the last one was Peg 24 and it takes 8 jabs to work my way round my stomach. So tomorrow I start working my way round my "clock" for the fourth time. I leave out 3, 6, 9 and 12 o'clock because I read somewhere to avoid the horizontal and vertical lines through the navel. But I never feel the jab. Must have very insensitive skin.
I actually think that your hip might be influencing your fatigue. I have a knee that’s given me grief since I had a meniscus tear surgery. ( arthritis has set in but I’m learning to cope as I now know the pain trigger, hence my daily steps have increased without effort. I inject every 10 days. I don’t have an issue. I put a reminder in my phone a few jabs in advance. Saying that 2 weeks ago I missed my jab by 4 days.🥴.
Thank you Wyebird. I am certainly fervently hoping it will prove to be so. Of course there is a lot of stuff I can happily do on horizontal days but nothing beats the adventures I can enjoy when "Jupiter aligns with Mars" and I get a good brain, good leg and good energy day, all at the same time.
Wyebird, I need your advice about learning to coe with my longtime worsening arthritis since meniscus tear surgery. What are your pain triggers, and how have you managed to increase your daily steps "without effort?" With my MPN, it is very important to me to stay active. I've been trying to increase my very slow pace and the number of daily steps, but the effort it takes with my knee pain (and shortness of breath) is tremendous. Any advice you can give would be appreciated greatly.
This is a difficult one. I’ve had both knees done. The really, really bad one gives me no issues I just can’t sit back on my haunches. The minor one stiffened up no end when I was in NZ and a hot water bottle was a must every night.
I went for physio after surgery. You must be able to straighten your knees..
I also had ankle surgery ( haugland syndrome) Balance after the first knee op was an issue. Then we realised I couldn’t walk backwards.
It might hurt and you will need to use a wall/ worktop for balance ( walk backwards, heel to toe) you must work through the pain.
Can you straighten your knees? Put one leg up hip level if possible. Does it strain the back of your leg. Move your knee up and down so you are lengthen the back of your leg. You must do it vigorously.
That was the most major exercise I had to do. I’d do it about 10 times a day.
That made a huge difference. Beyond that we are all so different. I swear by physio. Failing that I do yoga and swim.
Good luck I have noticed if I don’t exercise my Et fatigue and knees stiffen.
Thanks so much. I will do those exercises and I also want to do physical therapy so that I walk evenly and in a well-balanced way—no extra weight on the “better” leg. My biggest problem is walking down stairs—bending my “bad” leg and then straightening it with all my weight on it. Thanks again for responding and for the helpful exercise suggestions.
I never had a limp after the first. But the 2nd has left me with a little limp.
I can’t stress the importance of have a straight leg even when watching tv I’ll have both legs up but my stiff one higher so gravity extends the knee joint. Let me know if it helps please x
Some great insights, as always. If it’s any assistance I started weekly on 90 then 90 fortnightly then 45 fortnightly and now do 45 every 3 weeks. My platelet counts remained similar & in satisfactory range (they barely changed) throughout the different doses & time windows. I’ve not heard anywhere that below 45 is effective but certainly, in my case, being at 45 and lengthening the gap between doses have given the same positive outcome.
Certainly is of assistance, thank you 3L.And have you noticed a pattern to the fatigue, assuming you do have the fatigue, since changing to every 3 weeks?
I am ET Jak2+ and I have been on weekly injections of 45mcg since diagnosis and I still am. It has stayed the same dose for the last year.It hasn’t been suggested that the frequency can vary. I don’t mind weekly though as all blood results normal and have been since month 5
I was fatigued before starting Peg and it has got a bit worse since then. It might just be the combination of Peg and my epilepsy medication. It’s constant although still work 2 jobs. I’ve got used to it now and I think it’s a small price to pay to keep my levels normal or “beautiful” as the consultant put it.
The fatigue has remained the same. I have never been able to recognise a pattern for fatigue & it continues to come & go randomly. No increase in fatigue noted when I switched to 3 week gaps. In fact my injection makes me feel a bit rough for 48 hours so there is a big plus in having 1 injection every 3 weeks rather than 3👍
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