IFN lowered my PLT immediately. It is the only Rx out there that has documented cases of halting the progression of our condition or causung molecular remission. It is usually recommended for younger patients because of this & also for women who may want to get pregnant since you can't be on HU while pregnant. If I could tolerate IFN, I'd still be on it as I've seen several people post on blogs I follow that have gone in remission &/or have not progressed while being on it & have been able to get off it all together after a couple years (or significantly lower their dose).

@A myMPNteam Member The problem with anagrelide is that it increases the risk of progression to MF. So not a medicine you want to take long-term. Anagrelide also has worst long-term outcomes than HU, probably for that reason. Longevity studies have shown the best outcomes for Pegasys. I suspect the results might be even better for Pegasys/Jakafi or Besremi/Jakafi, but those combos haven't been around long enough yet for long-term longevity studies.

@A myMPNteam Member The studies do show Jakafi makes Pegasys more tolerable and even to those who can't handle the medication themselves. It is the best combo I've seen in medical research. It takes less time to work and to get a chance at remission. The studies also showed low doses in the combo are effective. I am taking 15mg (5x3) jakafi and 45 pegasys/week. At 8.5 months, I am now lowering the dose to 34.2. In the meantime, I have been titrating off of anagrelide from 3mg to 0.5mg. So almost off anagrelide which I used to get off plateletpheresis since anagrelide acts quickly, esp compared to Jakafi or Pegasys alone.

As far as the dosages go, the study had people go as low as 10mg on the Jakafi. I don't think you need to go above 20mg total a day. If you've already had trouble on Pegasys, maybe you should start below 45. Hydration is super important. I drink 144oz of water a day. My main issue is still dry eyes/dry mouth and sugar makes it much worse.

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A myMPNte...

A myMPNte...

I tried Angrelide for one month and it caused me to have high blood pressure (mine was always 100/68), dizziness and headaches. I was taken off immediately and put back on Hydrea! My next visit we will discuss which med to place me in as Hydrea causes severe diarrhea if take every other day. I’m taking it only every third night.

@A myMPNteam Member I removed the non-PV meds and put just the dose changes from the combo to clean it up. Once Pegasys was added, the next 18 months have been continual dose reductions to keep up with the improvements. I'm on 66% of the Jakafi starting dose and 8% of the Pegasys starting dose, and I have removed plateletpheresis and anagrelide from the equations!

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A myMPNte...

Wow, those are a lot of medications and all at once.
Good now at least you said the Pegasys and Jakifi is working.