I just had to change from Pegasys due to too many side effects, and was put on Jakafi. My question is does 15 mg. twice a day for a woman that is 110 lbs. seem like a lot? From what I read it seems so to me. My platelets had gone down on Pegasys from over a million to 567, but with bad side effects. We tried to reduce my Peg dose, and the platelets started back up again to over 600. Maybe that's why my starting dose of Jakafi is higher.
Also, I don't know whether it was the Peg or Jakafi since I just started Jakafi today, but I certainly have excessive gas. Anyone else experience this?
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dogsandhorses
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the standard start for Rux is 10mg BID, the allegedly 10% need less and 10% more, one thing to remember with Rux is it’s common for platelets to rise initially before falling.
Not sure about gas, I’ve heard of it though.
Correction to this post I should have written 10% need less and 60% need more
morning. I ve been on rux for about 3 months ( couldn’t tolerate interferon)
I m afraid the rux is responsible for the excess gas. It’s a known side effect.
Ask your haematologist for simeticone an anti flatulence if it’s troubling you.
My husband says the excess wind is quite useful - he always knows whereabouts I am in the house!
I too am on 15 mgs twice a day. My platelets and white cells shot up after coming off hydroxicarbamide ( I’d been on it for over 15 years) bit of a shock to my system obviously.
My platelets are around 1600.
I m not worried - I have a super haematologist who specialises in MPNs, who also isn’t worried.
I may have to take 20 mgs a day. My view is we’re lucky to be able to take it.
All will be well. Just find a crowded aisle in Sainsburys and glare at everybody else in an accusatory way if the wind gets the better of you! Louise
That made me laugh Louise! Isn’t it true we should have an explosion of wind 15 times a day ? I f my horses don’t fart all the time we are in big trouble!!!Actuallyafter I got used to Jakavi & worked out the food less likely to cause wind I don’t have much bother now.You will be ok & can hide from hubby soon ! Love & keep well ,Sally
Made me laugh, too! I learned from my Dad when I was a kid that you want a horse that farts, so that's a good thing for my horses. Not so sure about me, though!
oh absolutely ,but actually after a while my jakavi was reduced & the wind gets less then.Odd tho isn’t it that non horsy folk have no idea that it’s a perfectly natural thing for us all not just us Jakafi people.Horses have been my life,same for you I think,nothing like a beautiful horse to lift the spirits.I think Winston Churchill said that the best thing for man was the outside of the horse.! He was right.Best to you,keep going.🏇Sally
Yes, my life has always had horses, too. I thought it was Will Rogers who said that? Anyway, it's true. When I get to feeling low, riding cheers me right up.
hi, I have been on Jakafi for nearly 4 years. I take 25mg twice a day. I am 147 lbs. I started on a smaller dose. It changed my life. I had been very exhausted and felt ill beforehand. I still get tired but not like that. My bloods are pretty stable. I am also on hydroxy. Good luck. Mal
Thank you for the response. After just 2 days on Jakafi, I feel some relief from the side effects from Peg. Will have to see how my blood responds. I had a pretty fast response to Peg, but just couldn't take the side effects.
I was around your weight when I started Jakafi after 5 years of GI hell on peg/besremi. I was 112 and started at 5mg BID. My doctor thought it was best as I too am the “sensitive” type. Didn’t move my numbers though. Am now on 10mg twice daily and it brought me platelets and hematocrit waaaaaay down.
OK, then starting at 15 may not be that much, and since my smaller dose of Peg at the end had let my platelets start to go back up, the dose makes more sense.
I had lost 30 pounds from this disease and became very underweight at 103 pounds. My hematologist prescribed 10 mg 2/day in June of 2023 and increased it to 15 mg 6 months ago. I’ve gained back about 12lbs and it has given me back my life. Hydroxyurea also caused too many side effects.
My platelets are usually high because I was a ET patient first. But as my disease progresses, they sometimes drop. For example, they dropped 400,00 in 3 weeks at my last lab appointment. I’m someone who actually worries when they’re in the normal range because the transplant specialist I saw last summer said that’s not a good sign for someone like me.
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