Yesterday I took my 40th injection of interferon and I had the results of my latest blood test today. Since starting, my dose was increased gradually from 45 to 180mcg a week and I've been on the 180mcg since the start of February.
My blood counts were showing a decrease each month since December and this month seem to have stabilised out. I had been hoping for more of a reduction so that I could look at taking the dose of interferon down a little but this months counts are a teeny bit higher than last months so that idea is very much on pause. The bright side is that my platelets have gone from about 1050 into the low 300's and my white blood cells have dropped from 10 to about 5.
Does anybody have experience of their counts stabilising on interferon and if so, how long did you stay with the same dose or how long before you started to reduce the dose a bit? I'm naturally curious about the different experiences people have on interferon. I'm staying on the 180mcg just now to see what happens.
For anyone who is considering interferon or is concerned about a slow response - my counts took 5 or 6 months and up to a dose of 135mcg weekly before they started to move downwards (we went to 180mcg because of an increase in haematocrit). My side effects have been limited which I believe are down to starting low and working up the dosage. My itching became all consuming on the 180mcg but I've started to take beta alanine and it has been a game changer on the itching front. Thank you to all those who have posted about it in this forum!
I know I like to come and read the experiences of others in this community and I always feel so supported. I hope that my little update can perhaps help others looking for some hope and reassurance along their journey.
Stay safe and well xx
Written by
Skyehope
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Skyehope - I have now been on Peg for about 2 years - but it literally took almost a year to get to a stable dosing regime. I started out at 180mcg every 2 weeks and my platelets started to respond but that particular dose was too hard on my liver (at one point my liver enzyme readings were 5x higher limit) so I took about a 2 month break to see if my liver would adapt - it did but of course my platelets started to climb almost immediately. Went back on at half the original dose 90 mcg every two weeks and we varied the timing from every ten days to every two weeks and settled on every two weeks.
My blood counts started to respond but it took a while. My WBCs fell first (which I was happy about as I had consistently elevated white counts prior to Peg) and then the platelets started to fall as well. At my recent appointment for the first time in at least a decade, all my counts were within normal limits - so both my MPN specialist and I are happy with where we are. We will continue monitoring every 4 months and if things stay stable will likely check on allele burden again late this year or early next year.
I have been fortunate in that other than the initial liver issues and some fatigue early on, have not had any side effects on the Peg.
I don't think the itching has changed for me. It got itchy, but wasn't worse at a higher level and has been very well controlled with cetrizine hydrochloride as others have noted. I'm at 400 mcu now. My platelets dropped at a lower dose of Besremi, but controlling HCT is the current objective and that has not yet been achieved. My liver so far has only been slightly elevated, but we'll see as I'm increasing the dose to 500.
I have been on Besremi for a year. And I have been stable controlled for 3-4 months now. It took awhile. Next month will be a year since last phlebotomy, yeah! As everyone says it is a slow drug with bumps a long the way.😊
Good news. Glad you are responding and tolerating the PEG at a high dose.
All of my counts have stabilized on 175mcg Besremi biweekly. I do seem to need a venesection about every 12 months to take the edge off the erythrocytosis. I cannot increase the Besremidose any higher due to the leukopenia.
The most important thing is that I feel better now than before I started on the IFNs. Quality of life is one of my highest priorities and I am fulfilling that goal. In fact, I feel better now than I did 10 years ago.
I'm interested in your thoughts on Venosection requirement. At every year I'd count that as a great success. I used to donate every 3 months so anything better than thatvI would have thought as no more than an inconvenience. Is being completely free of this a real requirement/ issue for you?
If the need for venesections remains at once per year, that would be a great success. The problem I had previously is that I was needing to do the venesections every three weeks. The venesection-induced iron deficiency symptoms were worse than the PV symptoms. I am very pleased with my current treatment plan.
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