I started a month ago. My fourth dose was last Wed. 1st three were at 50mcg, last one I did 70 as a compromise as I awaited Dr instructions. Next will be 100.
The first week or two was harsh, max of my usual malaise, full headed etc. Likely this was from the HU combination thru the transition. But yesterday, clean of HU, was another bad day, my usual malaise etc. So at least early on INF is not a miracle. Today I feel better if not entirely fresh.
We have been posting and discussing INF for a while, now it newly gets real for many of us. I'm inclined to study the adverse reactions more closely as I put this stuff in me, sec 4.8 here is a good and detailed list:
Dizziness is the closest description for me, but I and others here report Malaise in general and this is not on this or most other symptom lists for MPN or the meds. I've had it regularly without meds, on HU and now still with early INF. We all know Life and Quality of Life are two different goals
I understand from posts here and other info that if one gets through the first 6-12 months with reasonable tolerance it is likely to continue ok. So I and other INF newbies await this period to find out.
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Meantime here are some plots of INF early progress. See reply sections for additional images.
WBC- INF starts at the last reading of 5. WBC decreases fast with the lowest point here on 50mcg Bes + 500 HU. Then with HU out for two weeks, it's rising by the last reading. My Dr says WBC is hit harder by INF than RBC because WBCs are renewed avg every 6 hours while RBC are renewed in weeks or months, so there is much more effect on WBC by reducing WBC production rate. I conclude Bes is doing something even at 50 since WBC is lower than even my high dose HU took it (Apr '21).
While INF hits WBC harder, as we have seen among many members, HU seems to hit all bloods more evenly. I will ask my Dr about this difference.
See below in Replies for more plots
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EPguy
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Here is a plot of PLT. On 50 Bes + 500 HU, PLT at 2nd to last point here near matches the low point Apr 21 with hi dose HU. So Bes could be having an effect. PLT Rises after stopping the HU. These are small changes so likely not scientifically important, but trend matches WBC.
Mean Corpuscular Volume is known to be high on HU and as discussed on the Voice, this and related items can be used to track HU compliance.
However I was not aware that INF also keeps this high. My Dr told me this, it may go down some (as seems to be here) but he does not expect it to normalize. He re-confirmed this is not a number to worry about.
Sorry to hear you’re having AEs, and hope they subside. As a matter of interest, what is the figure for your MCV? Mine has hit 113, has been as ‘low’ as 103, and, at last FBC, was 107. I’m not anemic or folate/Vit B12-deficient, but is macrocytosis REALLY not a concern?
Sorry about confusing MCV plot above, I fixed it to remove the top text line. It shows a peak of ~117, (after my max HU dosing) and a currently ~104.
My MPN specialist Dr is very clear about it. But it likely must be considered in the full context of our conditions, for example in my case nearly every blood # that is commonly checked are ok. It could be certain other numbers + high MCV are more concern.
Glad your doctor isn’t concerned. Mine has never mentioned it and so I assume she would have if it were an issue. Certainly it went up - as expected - when I was on HU, so it’s interesting to read that IFN also has that effect.
I'm not sure it's AE from INF. My malaise dates to my Dx Nov '20. It was bad enough at that time I was on edge to go to emergency (ER) and I told my husband "something is not right". It's distinct from the Covid long haul unpleasantries that coexisted at my Dx. Controlling bloods has since kept malaise well below ER visit levels, but we all are after quality of life.
I've been ok for a couple weeks, but Saturday was no good, and I had hoped INF had put it away. 1 month on INF is not much however, and I expect better days.
Yeah - really sorry it’s not abating and hope it does before too much longer. The trials you commented on elsewhere are so promising, aren’t they, and at least with IFN we have a good chance of even more disease modification in the next few years. I’ve just had a nice conversation with a friend whose wife has had multiple myeloma for 20 years. He told me that when she was first diagnosed, life expectancy was 2.5 years, so it just goes to show what is being achieved now in this field and why we should continue to be optimistic about our prognoses.
I've told some friends in silliness, if you want to catch in MPN, wait about 5 years for all the good things we'll have. But we have right now so much more than before. Hunter has been at it for 30 years, seen it all.
Many a true word spoken in jest! I agree. I was looking at some older posts here, from 4 years ago, and someone wrote, ‘we’ll be in a stronger position in 5 years’ time and then in a further 5 years.’ That time is fast approaching. The vaccination strategy from minimal residual disease, following IFN treatment, seems to be the most promising.
Agree vax+ INF is worth following. I've also posted before on ATO+INF, amazing pre-clinical results. But ATO, like INF, is non-specific, while the immune therapies (vax, CAR-T...) getting started are rationally designed. I'd bet most on these new ideas using specific and new molecular knowledge of our conditions.
I too am on Besremi. Never went above 50mcg/2 weeks, since it's been keeping my numbers stable. I also had the dizziness, which wasn't fall down type dizzy....more like what I'd describe as "woozy". Just had my 8th dose and I'm happy to say that the wooziness is pretty much gone. Hope it goes away quickly for you as well.
Hi EPguy, thank you for your post, very informative. You got me thinking. I am planning to start on Pegasys (Besremi not available here in UK yet), switching from HU, in September, but am due to travel for a work trip in November to far-away lands. Maybe I should postpone the new start 'til I'm back. The haem thought a couple of months before travelling should be fine, but reading your post I am not so sure. I am feeling fine on HU atm, my switch is a choice in consideration of the longer term.
Everyone responds differently but it can take quite a long time to get used to Peg for some (not all) and some have to quit (me for example) , unless you have urgent medical reasons to switch before the trip my two cents would be to wait until post trip
Thanks Ainslie, that sounds wise. My next consultation with the haem is in June, so I will be discussing this in particular. I don't believe that waiting for another three months will make much difference, unless of course the situation with the HU changes. We shall see.
I was considering to delay for a different reason, to join Dr. Fleischman's NAC trial. She told me "don't delay" INF for that esp because I'm a good candidate for INF.
I'm near the random cutoff for hi vs low risk MPN (age 62) and the Silver MPN group is clear that we should start INF soon as possible for lowest progression risk/ max benefits.
In my opinion Nov is many months to not be having INF benefits but long enough to find major tolerance issues. Most likely you could have your titration figured by then.
Best to defer to Dr advice, but these are the considerations I have in my case.
Thanks EPguy. When I discussed in March whether to start with IFN with the haem and explained my travel plans he seemed quite confident that starting in September was fine, i.e. we had enough time before travelling in November. However, my issue is that our travels will mean a lot of time spent in not so comfortable settings in a hot climate ( I work for an NGO) , with most of the day on site visits in remote settings . It is very tiring and I don't want to be a burden if I am not feeling well. I did not discuss this aspect with him but I will at our next consultation in June.
Thanks so much for sharing your experience and I hope you feel better. It is helpful to learn about a drug that may be in my future from you and others.
Thanks for concern. I see here that many are living with good QoL (life quality) while some of us less so. What decides this different remains a mystery for many.
Thanks for your update. Yes it's early days as you and some others say, I think most of these MPN meds have some nasty side effects in the beginning that (from personal experience anyway) go away/get better with time after body has adjusted to it. I really hope that with a bit of time you'll start feeling a lot better and you'll find that the switch from hydroxy was a good one for you. And if not you can change to something else. Please keep us updated. Best wishes to you take care
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