Hi everyone. Since having to give up Hydroxy nearly 2 years ago, because of side effects , I have been on aspirin and omeprazole only. That has worke until now, but I saw my haemotologist yesterday and , while the red count is still within a normal range, my platelets are now beginning to climb. The doc has recommended either anagrellde or Peg Interferon. I have PV. I'm going to phone the nurse today and get her thoughts and advice. I have the MPN leaflets on both, and know about the possible side effects, but I'm tending towards Peg. Thoughts please!
Many thanks
Sandra
Written by
Splb3317
To view profiles and participate in discussions please or .
I've had both and on the whole preferred Anagrelide. Side effects only lasted a couple of weeks - palpitations and headaches - but after that I felt normal. Pegasys made me more fatigued and affected my appetite.
Thanks for that. I understand that anagrelide affects only platelets where interferon seems to be beneficial all round. I'll keep on investigating!!Thanks again for your information. Sandra
Hi, I was on Anagrelide and found the palpitations unbearable in the end. Pegasys, I started on 180 dose, now on just 45 per week, platelets controlled well. Side affects got less as dose was reduced. Some people but not all have a complete response I understand.
Everyone is different but I think Peg is far worth a try. Take care x
Thank you so much. That's really useful. My slight concern is how long it will take for pegasys to bring the platelets down. But I'm thinking I'll try it.Thanks again. This forum is so helpful at these times.
Hi Splb3317. I have had to make this choice as my platelets oscillated wildly on Hydrea, and I chose Pegasys. I don't have any experience with Anagrelide for comparison. I made the choice because the research on Peg holds the hope for better molecular and haematological response, though more research is needed. So it is a bit of a punt. Like Otterfield, I am impacted by fatigue from Peg. My white cell count is the best it's been since diagnosis. I find it doesn't fully control the red cell count and I have needed 2 venesections over one year, (I needed one while on Hydrea). Some of the reports at the recent ASH meeting are very promising for interferons, especially the new Besremi.
Hi. Thank you so much for that. It was really helpful. I think, when I see my hemo next in a few weeks, I'll be asking to go with Peg interferon. Thanks again.Sandra
Hi Sandra. If you decide to go with Pegasys (pegylated interferon), I suggest you ask to start on a low dose and see what side effects you have. Then you can build it up as and if you need to. If your counts have been reasonable while you have been on only aspirin (and omeprezole) for 2 years, it sounds like there isn't an urgent need to rush into high dose. I'm quite sensitive to drugs and found 45 ug/week, which is the lowest dose, was adequate for me to get control of counts. I tried 90 ug and the fatigue was too bad, but it turned out I didn't need that much. After 4 months I went to 45 ug every 2 weeks. I don't know how people tolerate 180ug. But everyone is different and you will have to experiment. It is slow acting so there's no need to be making urgent decisions - I found that a bit of a surprise. All the best. Let us know how you get on. Best wishes.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.