Success with Jakafi

[dogsandhorses]

So, with a diagnosis of ET Jak2 positive, my first treatment in 2018 was Hydroxyurea, which I took with many side effects until early this year when I could no longer tolerate it. My platelets never went below 495 on Hydrea. Lots of side effects, mostly gastrointestinal, and lost 30 lbs. that I didn't have to lose.

Found an MPN Specialist in another city, and went there for a consultation. He referred me to a different Hematologist in my city, and I started Pegasys in March this year. Platelets went from over a million down to 571 on a dose of 45 mcg per week. Had lots of side effects from that, so changed to Jakafi less than a month ago. Platelets are already down to 271!!! Fewer side effects, so I feel like I can continue on this treatment at last.

I just wanted to share what seems to be a success story!🤞🙂

[Spanelmad]

Great news!! Well done in advocating for yourself with the folks in white coats!

[conno61]

That's great news. As you know I've had major problems with peg. I asked the idiot haemotologist about jakafi and his reply was " oh that's not meant to be used for ET" , I've sacked him.

[hunter5582]

Great news. Glad you could access Jakafi. It is in clinical trials for Et too. hopefully, it will get approved and easier for everyone to access.

[Loubprv Volunteer]

Morning I m so pleased that Rux is working for you, but just wanted to add for anyone teetering on the brink of taking hydroxicarbamide that I took it for 16 years and didn’t have any side effects at all.

Interferon didn’t work for me, but does for thousands of patients.

I too am now on Jakafi and like you it - touch wood- seems to be doing its job ( I have PV)

Must reiterate that every drug can affect every person in a different way - if at all.

We have to try them to find out, but one will work fine in the end.

I just put my hands together for our wonderful haematologists and the clever folk who develop the drugs.

Happy Sunday! Louise 😊

[dogsandhorses in reply to Loubprv]

Yes, you are right. We each react differently to different treatments. Just wanted to share my experience, because I was so excited that it worked for me so quickly.

[Loubprv Volunteer in reply to dogsandhorses]

And quite right too! 😘

[Chicagopv]

Glad it works for you. I’ve been on it about four years. I switched to it because of severe itching. In the US it can be costly, depending on your insurance.