Hi everybody, my name is Lee and I was diagnosed with ET (MPL EXON10) in Nov 2019. I progressed to Myelofibrosis in March 2021.
I was put onto Interferon Pegasys June 2022 to slow down platelets which reached a high of 776. White blood count had reached 22.
I had very mild side effects which only lasted a single day, but my blood counts crashed (pancytopenia) after 16 weeks on 90mcg injections. Platelets ended up at 22, Hb57 and Neuts 1. After a reasonably urgent visit to the hospital for a few bags of blood I felt a lot better.
Its taken a year but my counts are almost back to a normal persons level and unusually for me my Hb is higher than when I was first diagnosed with ET and as a consequence I feel great. The only symptom ive had through all this has been fatigue which disappeared a couple of months after the last transfusion.
Ive got a million questions but I suppose a good start would be has anyone experienced or heard something like this with Interferon?
I appreciate any replies
Regards
Lee
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Pragmaticone
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Havn't heard of such drastic drops on only 90 mcg/week, but if that happened to me I would have greatly reduced the weekly dose to 22.5 or 30 mcg/week (or every 2 weeks) long before blood counts got that low.
Thanks Monarch, my consultant had never seen this happen before and thought that the blood counts would level off. The suggestion now is that I am drip fed small ammounts once my counts are high enough. I see this as a positive to be able to control my counts with such a small amount of Interferon. I just hope I can also get the rumored benefit of fibrosis reduction from Interferon from such small doses. Fogot to mention that I also had an extra unscheduled bone marrow biopsy to see if I had progressed to Leukaemia which came back clear.
I’m ET Jak2+ & have been on regular doses of peg interferon for over 3 years. It’s kept my blood on a nice straight(ish) line graph with most blood parts within a good range & for that I’m very grateful.
You seem to have had a sticky start but looks like it’s come good for you too.
With regard to fatigue I would say, it’s the one negative thing that I sometimes endure. I’ve never been sure if that’s down to the medication or the illness to be honest but I consider it a small price to pay to stay on an even keel.
Interestingly there is only a year between our ages. I still consider our ages as young” & therefore I tend to focus,as much as possible, on enjoying life.
Thanks for the welcome Threelions. I feel lucky with the Interferon because it did what it was supposed to do with no real side effects and at lightning speed. I also cant wait to get back on it as anecdotally it can have positive effects on marrow fibrosis.
Fatigue for me was quite bad when my counts were at their highest and Hb was around 100 but ive not had the fatigue for abour 9 months now.
You are correct that we are still young😄 and I'm now planning to get back in the gym and start cycling again which have been an obsession for most of my life.
sorry to hear about what happened, my first impression is why did they let your counts get so low, I am not experienced with MF and I don’t know how often bloods are checked but certainly with starting a drug or venisecting bloods are often done every week or two until stable and then lengthen the times between tests. I have PV since 2010 and it’s very stable but I still don’t like to go longer than 4 weeks without a CBC
Hi Ainslie. Yeh, the trajectory was always down and the consultant did recommend a dosage reduction but the downward spiral did pick up speed between the last blood tests which were every two weeks. In hind sight they should have been weekly.
I’m so glad you’ve worked your way back to stability and feeling good. That’s wonderful!
I was also intrigued by the use of interferon for secondary myelofibrosis. I’ve been wondering whether it would be helpful to continue on the interferon if my PV becomes MF, in hopes that it would possibly slow disease progression and decrease the allele burden. Was this topic a conversation with your doctor? My doctor has talked about switching to Jakafi if things move to MF, and I’ve been wondering…
Hi Gardnerd, Interferon was only discussed in terms of lowering blood counts, in my case platelets. If I had my time again and knowing what I know now I would have liked to have been on Interferon well before I progressed to MF. Yes, the hopes I have now regarding Interferon are the possibility of slowing/stopping/ reversing the fibrosis and in general arresting the overall development of the MF. Hope that helps
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& therefore I tend to focus,as much as possible, on enjoying life.
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