After waiting for 3 months for a drug change, I finally had my first Peg injection this past Tuesday. My local hem/onc doc prescribed 90mcg for my first and my next injection in 14 days and 135mcg and then up to 185 in another 14 days. Not sure why she is going every other week. 🤷🏻♀️
I did have chills and then was HOT and flushed with some fatigue and a headache. The next day the headache and feeling flushed and hot was gone but fatigue lingered for the rest of the day.
Since January, I have only been on aspirin and phlebotomy. By the beginning of May, my HCT was at 38 and I was feeling better. As of this past Tuesday, my HCT was 40.9. It has been 6 weeks since my last phlebotomy! Previously, I needed one every 2nd to 3rd week. I was surprised to find that my body was keeping my HCT in check for a longer period of time. My platelets are up to 822 and I would guess they would continue to rise except for the Peg, now. I am holding my breath to see how future injections at higher doses affect me.
I hope you all are doing well! I will keep you posted on my progress. Well, hoping for progress!
All my best
Kim
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Wewo01
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Welcome to the IFN Club! Hope you find membership suitable. Effective and adverse effect free (or at least tolerable).
Note that adverse effects on PEG are dose dependant. AEs will typically increase along with the dose. I am not sure why you doc is moving so aggressively with the PEG. Many find 45-90mcg effective. I would inquire about dosing strategy and the underlying rationale.
Regarding the phlebotomies, you do eventually get so iron deficient that the frequency of phlebotomies needed decreases. One of the benefits of PEG is that you will be able to let your iron levels come back up and still maintain control of the erythrocytosis. In addition, you should see a decrease in the reactive thrombocytosis that phlebotomy/iron deficiency causes.
Congratulations on moving forward with your MPN treatment strategy. Hope you find that is works as well for you as it has for others of us.
Thanks, Hunter! The iron explanation makes sense and it is no doubt why I have been getting breathless and diaphoretic. It was 45 that I took. Next is 90. I remembered it incorrectly.
That makes more sense. For what it is worth, I would stick with 90mcg for a while and see how that works. That is just me and based on my own response to PEG. I would not presume to say what you should do. That decision is based on your treatment goals, risk tolerance and individual response to PEG. I am wondering about the every two weeks when Pegasys is usually dosed weekly. I would also wonder about trying 90mcg weekly rather than going higher on the bi-weekly dose.
I am currently at 150mcg of Beremi. I am going to see how that works. If I need to, I will up the dose again rather than do another phlebotomy. If I cannot tolerate the higher doses of IFNs, then I will try a mini-phlebotomy and see if that works.
Treating PV is always a balancing act. At times it seems a bit like riding a unicycle on a tightrope while juggling knives. The balance is different for each of us but the challenges are the same. It is a good thing that we are all here for each other to meet the challenges.
It is interesting Dr is starting with 2 week dosing. That's normal for Besremi but as you indicate the standard starting with PEG is once per week. So when you compare your average dose to the typical 1/week initial dosing, you can cut by half; for example 90 mcg/2weeks = 45mcg /1 week. The doses don't look as large this way and it compares more accurately to the common PEG experience.
It's possible you could have more variation in levels in your body with larger less frequent dosing, this has been a trade off with INF. Both PEG and Bes have improved performance on this issue however vs earlier INFs.
Your Dr's judgement is what matters here. But I would ask Dr for more info on this interval plan at least for curiosity.
We also see many here using PEG with longer interval times, but I think it's usually after a more frequent starting period.
To avoid feeling horrible, I suggest you should consider doing 45 for at least 2 weeks, then consider 65-70 for 2-4 weeks then if and only if the side effects are still tolerable, try 90 mcg. Then proceed just as cautiously to 110-115, then 135 mcg. But it might turn out that a level below 135 is your tolerability limit. If so, that's fine too.
Kim, not sure why you're starting on such a high dose of Peg. I found that 45mcg/week was enough to keep my numbers in check. Please ask about this. Also, your platelets are most likely high because of frequent phlebotomies. Your body thinks it was bleeding to death and manufactured excess platelets as a response. They may come down on their own with Peg, even at a lower dose than what you're taking. And your iron will have chance to replenish itself.
I will have a CBC tomorrow and see what the effects have been to my first injection. I look forward to not having the phlebotomies and freedom from my PICC line!
Hi Kim, I have now had five doses of Interferon (90) and only inject once every three weeks. I know people on here say it should be every week but my platelets had dropped down to 480 from around 700 after the first nine weeks.
I have asked my consultant to keep me on the low, three weekly dose in order for my body to get used to the invader (Interferon). It also means I can go away on holiday to far flung shores and not have to take any meds with me. I just have a blood thinning injection once on board the aircraft.
I did see an expert up in London and he agreed that this was a gentle way of determining how well I was coping with the drug's side effects.
I also had the chills etc after the first injection but since then I have had violent sickness and diarrhea, chills and leg cramps - just overnight, I was OK after about 10am and then it all started up again around 10pm - weird!
That lasted 8 days (whilst I was in Las Vegas), the next time it was for one night, twice with a week apart, then nothing after the third one. After the fourth one I was stricken again but so far after my fifth I have fingers crossed that things are settling down.
I do wish you all the best and hope that you manage to cope with any side effects. Everyone is different and has different side effects. The way I look at it is that putting any kind of foreign substance in your body will cause a bit of a knee-jerk reaction and it is up to you if you feel you can cope with it and lead as normal a life as possible.
So, I'm off to Guyana to stay in a mud hut with hardly and electricity and no hot water!
I’m surprised you have started off on a high dose and at the 2 week intervals. Worth discussing with your haematologist and I guess blood test results will be the proof of the pudding. I started on 45mcg to get used to the drug and soon increased to 65mcg. Good luck
I agree with other posts above. In my experience, my non-MPN hematologist wanted to move dose up quickly. I checked with my MPN doc and he said go slow at least partly so that your body can get used to and tolerate the new drug. It seemed that he was ok up to 90 mcg/week but above that pegasys has greater side effects for many of us. Pegasys is slow to act so it doesnt make sense to increase dose too quickly. Since pegasys is off label, some of the dosing recommendations may come from its use for hepatitis for the non-MPN people.
So another thought and maybe off topic question. Dosing over different time frames is different for the body, I would assume. So 90 mcg every two weeks is not the same (to the body) as 45 mcg every week. I guess it has to do the maximum instantaneous impact shortly after injection and the half life of the drug in the body and maybe some kind of continuity of the drug in the body. So I have been a bit surprised to see different injection schedules. I have seen on this board people maybe near hematological remission that seem to be on a less frequent maintenance dose and then others that just seem to be on a longer schedule and then besremi on a two week schedule. My own experience of having stopped pegasys for three weeks seemed to stop the effect it was achieving and it took a long time and a higher dose to get it going again. Again is this possibly an off spec issue of never really being thoroughly tested for MPNs? Is there anything we have learned from besremi and its studies about its time and impact in the body? I hope its not about making money from selling the drug, but who knows.
You're right about the dosing schedules. The early INFs required daily dosing and caused wide changes in body levels of the drug and so intolerance. The Pegylated versions (PEG, Bes) hold a steadier level so the doses can be farther apart. Bes makers claim their version is the best at this so they can start at 2 weeks and it usually goes to 4 weeks after a year. But PEG seems to work ok too for many with longer dosing so Bes does not have a lock on this idea.
Kim - welcome to the Peg family. I am going to be a little contrarian here..my MPN specialist , who has been treating ET and PV with Peg or previously the non-pegylated versions of IFN (off-label) for decades and was the first to use Besremi in the country (Israel) for PV back in early 2020, starts patients on Peg at 2 week intervals. I have an in-person consultation with him in a couple of weeks and will ask his rationale vs the weekly approach. If I remember correctly, it has to do with increasing ability to tolerate, and therefore remain on the IFN (thereby increasing the chances of achieving molecular responses - but will ask).
On the dosing - I had the opposite protocol. The specialist started me at 180mcg/every 2 weeks when I transitioned from HU to Peg. This was partly due to the fact that I was at a fairly high dose of HU (1,500 (3 pills) a day and sometimes 4 on weekends) which proved to be both intolerable to me and not as effective in driving down the platelet count as we had hoped. So when I moved over to Peg he wanted to be aggressive at first to quickly reduce platelets (they were hovering over 1,000 at that time with some noticeable gum bleeding). I did push back somewhat based upon the feedback I had received from this forum and others wanting to start low (like we did with the HU and monitor the need to increase). I eventually approved the plan as I was excited to move to Peg from HU. The high dose of Peg immediately did the trick. My platelets fell from over 1,000 to 429 - and it was the first time in 7 years that my platelet count had been within reference range. My WBC also improved from a fairly consistent state of leukocytosis (12.6 - 14.6) to "normal". And the best news was, except for an increased hydration need and a little fatigue on day after injection - no side effects whatsoever (or so I thought). Turns out, after about 3 months at this level, liver toxicity reared its ugly head with my liver enzymes being far above normal.
We discontinued the Peg for a month, let my liver normalize and then started back up at half the initial dose (so 90mcg/every 2 weeks) - things were fine on that dose for about 6 weeks and then once again the liver enzymes increased - not as bad as the first time but still significantly higher than normal. This time my MPN specialist suggested that we continue at the 90mcg/every 2 week dose to see if my liver could adapt over time to the Peg (he said it was a real-time stress test - that we could reverse immediately if need be - although as I am keen on staying on Peg i really did not want to think about moving to another medicine for platelet control).
Good news, is that my most recent reading (yesterday) - the liver enzymes have fallen. One to reference range and one still slightly above but definitely within the "acceptable potential damage" range my MPN specialist likes to call it...so we continue on the Peg.
Long story short - I agree with the others on the need to question the doctor's plan to automatically increase your Peg dosing every two weeks. While it might be necessary to increase to get you to your desired results (quality of life and hematological ) - many medicines, especially Peg, can take some time to "kick in". It might be better to agree to allow a little more time to see what effect the Peg is having (assuming you are being monitored and getting blood work at regular intervals) - a slow and steady (but increasing if necessary) approach might be the best path (of course in concert with your medical professionals).
Three very important lessons I have learned on my MPN journey are: 1) It is best to know what my personal health goals are (for example - quality of day-to-day life is more important
to me than hitting an certain level of platelets); 2) the more informed and persistent I am as a patient, the better results and care; 3) so much of this, even with amazing MPN specialists, is trial and error as we are all so different and our diseases present as uniquely as we do!
Thanks for posting another view and your own experience with PEG. That is the great thing about this forum. Sharing our knowledge and experiences informs this group and helps everyone make good decisions for themselves. We really are stronger together.
Your recent news sounds encouraging. I just had my CBC today and the 150mcg dose of Besremi seems to be working. I will post more about that later. Meanwhile, all the best on your current plan. Wishing you great success.
Neat how well INF is working for you. Your starting dose averaged is 90mcg/week which is familiar from others here, not too extreme. And your current dose is like 45mcg/week.
But your note "(2 week interval) has to do with increasing ability to tolerate" is interesting since one would think it makes larger variations in INF levels. Maybe a sharper peak is helpful? Let us know what Dr says on that as you say.
Thank you so much for the input and relating your experience. I have been very skeptical of my local hem/onc Dr. I know I am likely her only patient and she declines to confer with my MPN specialist. I find her extremely frustrating.
That is very frustrating. Don't know your local health care practices but perhaps your GP could provide a referral to an MPN specialist. Initially my GP provided a referral to a hematologist who immediately put me in contact with my MPN specialist. As many others on here have stated, if possible, seeing an MPN specialist is very important. Most non specialists just don't have the specific knowledge and experience necessary to treat MPNs. As all of these replies demonstrate, even amongst the MPN specialists, there can be a wide ranging approach.
Other than ego, there really is no reason a local doctor with limited experience would not welcome at the very least a consolation with an MPN specialist (if not agreeing to tag team on your treatment plan). At the worst the MPN specialist confirms the local doctor's course of treatment (proving them right) and perhaps the local hem/onc might learn something and be in a much better position to to only help you but perhaps any future patients of theirs.
Thrilled you have found a dose of Peg that works for you. I too found life intolerable on high dose of tablets prior to Peg 17 hu and 9 anagrelide a week so very similar to you. Haemoglobin 93. My platelets hovered 450-500 though unlike yours. Just to let you know if your liver plays up again it’s possible to combine Peg with Hydroxicarbomide. I hope this won’t be the case though. Good luck.
Hurrah you are on Peg. I do hope it agrees with you. The side affect after your jab will diminish with each jab. It’s taken months for it to happen with me. They start Peg slowly so every 2 weeks is ok. Some start on 45. Weekly. Are you having a blood test before your next jab? I did. I’d query if not. Good luck
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