Has anyone noticed an improvement in side effects swapping from regular to pegylated? My fatigue, weakness, exercise intolerance, hair loss etc is ruining my life and I wondered if the change would help with this. I've been on regular interferon for 1 1/2 years.
Regular interferon vs pegylated interferon side ... - MPN Voice
Regular interferon vs pegylated interferon side effects.
My symptoms improved a lot on swapping to peg interferon. All the symptoms I had pretty much disappeared and my life improved so much. I just only use to get a headache and a little fatigue on the day of injection so alway did it before I went to bed so never impacted too much on day to day.
Thanks cheeks1 this is reassuring. I haven't got the energy to fight it anymore & my life is passing me by very uncomfortably. I am by no means depressed, just absolutely exhausted & simplest of tasks are shattering.
They do not fund it in New Zealand but I was hoping to talk to my heamatoligist in the hope she may be able to make a special request. It is my last chance as I am intolerant to hydroxyurea & can't have anagrelide.
I started on Peg six months ago after 13 years on Hydroxy - took me a while to settle on it as I had to keep on the Hydroxy as well til Peg kicked in to work - but in recent weeks I am just on the Pegaysys and find it very good and it’s working well keeping my platelets in normal levels too - think most find it preferable to basic interferon too. All the best
Hope this helps
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I’ve been on Peg 12 months, no side effects, started 45mcg and slowly increased to 120mcg,. Now decreased to 75mcg because WBC dropped from 12 to 2.5 and Platelets 600 to 145
The really good news is my JAK2 AB has dropped from c.70% to c.50% despite my TET2 mutation. My TET2 also significantly down. Peg is meant to be less effective if TET2 mutation combo
Hi Paul. I continue to be on 45 mcg weekly of Peg. My platelets have dropped from 1.6 million to 491. My Hemo has not increased my dosage, even after seven months now, because I guess apparently it is working. However, I also am dealing with low WBC now. 2.9 last week. How do you test for the AB? The last labs he ordered for me included a Jak2 test, I suppose to see if they mutation was still present and it came back positive. But that’s different than what you are taking about yes?
The AB checks the % of mutant JAK2 in your blood. I was 56% when first dx, increased to 75% last year, now about 50% after one year of Pegasys.
The ideal result is to get down to zero, called ‘remission’. A 50% reduction is deemed a molecular response.
There are various expert opinions about the significance of this and it’s correlation to slowing progression and improving bone marrow (if taking Pegasys/Interferon). Bottom line is that a decreasing AB is potentially good news but it is an inaccurate test, hence the requirement for a 50% reduction as proof of a molecular response