At the start of treatment nearly 2 years ago my platelet count was 725, I was responding to hydroxy but struggling with side effects, the lowest they got 425, been on interferon for 9 months and last blood count was 623 . Just been on phone with haemo and she thinks the hydroxy would be better 😢.
We have decided to try 135 of interferon to see if that makes any difference, all I can do is hope. I was hoping for better results.
Hi, ciye. I am post ET MF, but with high platelets. Mine are also very stubborn, usually in the 700 to 800’s. Nothing seems to work. So your post is interesting to me because at my last visit to my hematologist, she mentioned possibly trying interferon. Currently I’m just on hydroxyurea and aspirin. I was on Fedratinib,as well, but because of the side effects, I stopped taking it in October. I’m looking forward to seeing how the interferon works for you. Good luck.
That sounds like a good plan. I would suggest reviewing your cytoreduction treatment target if you are using one. Some MPN Speciaists use 600 now rather than 400. silvermpncenter.weill.corne...
It really is more about controlling symptoms than numbers on a CBC. What matters most is feeling good and reducing risks. It does no good to reach a numeric value on a lab and feel lousy from adverse effects in achieving that goal.
Hope you get it sorted ASAP.
My experience after 16 months on peg, is platelets down to 500, but hb is now 96 and I have no energy, I feel no better than on hydroxy, haemo has changed me to injections every 3 weeks instead of every 2. I did read recently that peg may be slower acting for calr.
I have stubborn platelets as well. I take 3 hydroxyreaus a day and my numbers are still at 1.2 million. I’m starting Besremi and hope I’ll have luck . 5 years ago I tried Pegasus but mom specialust stopped it because numbers didn’t move at all after 6 months . I wish I would’ve stayed on it longer but he wouldn’t let me
Ciye - hope the increased dosage of interferon works. As you stated, at times it takes inf a while to really kick in. If you are loathe to go back on HU (I was also very intolerant at high doses), then make sure you have a plan with your doctor around how much time you are willing to allow the inf to work at the higher doses and what is the plan of action, everything else being equal, if another medicine needs to be added.
been on interferon for 9 months and last blood count was 623
By "interferon" do you mean Pegasys or Besremi? (they're both interferons)
Pegasys I doubt Besremi is available on nhs.
Bresmi is available in the UK on the basis of an individual funding request ...
Hi ciye. I have been waiting for my latest results to reply. They have just gone down after nearly a year of using peg. You might have seen my post about keeping the peg at the correct temperature in the fridge as I kept it at the bottom where it was measuring 0° and as it says do not freeze. I don’t think that helped anything. Could be coincidence as well. It’s definitely kicked in now. Peg can be slow to act for some of us. I signed all the papers to take hydroxy but chickened out at the last minute. I was going to be using a low dose of hydroxy combined with the peg. Might be worth asking about that instead of switching totally from one to the other. Luckily I have a very understanding patient haematologist. They put my dose up to 90 from 65 at one point but I wasn’t happy so we went back to 65 after about 6 weeks I think. Did that help it kick in? Good luck and let us know how you get on
Glad yours are coming down. I didn't like taking the hydroxy, so will keep going with peg. I did see your post about fridge and have bought thermometer I let the last injection come to room temperature.
Yes I leave peg out of fridge for an hour beforehand. Hope your figures come down soon too. It’s bit of a waiting game with the peg. Let us know how you get on x
Will do
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