Has anyone had experience with Jakafi?

Been on Jakfi for 3 1/2 years. I have MF. Started out at 15 ml at 25 ml now . Dizzy a lot bruised very easily CBC is completely scary looking it so low. But I feel GOOD not GREAT . But it is working for me right now !Good Luck Everyone on this site .

Hi there,
I had eosinophilic leukemia and was on Jakifi 25mg 2x per day (50 mg total) for 11 months with no noticeable side effects. Then I had an allogeneic stem cell transplant in November 2024 and came off jakifi. I recently had to go back on jakifi 10mg 2x per day for GVHD and haven’t noticed any side effects for the past month I have been on it.

They do monitor your bloodwork to make sure things are stable.

Good luck. It can be scary to start something new that has to be monitored but hopefully you’ll have a good experience with it as I did.
All my best,
Deb

Has anyone had an excacerbation of squamous cell cancer after using Hyderabad or jackafi?

@deb913 I’m 76 and have been on Jakafi for 1 year with no side effects. It helps with my itching and keeps my blood counts in line. I have PCV Jak 2 positive

@baygirl80 Yes!! When my Jakafi dosage was increased from 10 to 15 mg my skin cancer incidents got worse. I had them before, but with the increase in Jakafi I had three separate ones removed from my right hand in 8 months. My hematologist said Jakafi encourages the cell growth, so I went back to 10 mg and am back to my normal having a few things frozen every year.

@papa6275 - do you mind saying what reactions you had to Hydrea? I had a bad inflammatory reaction (joint pain, muscle weakness, swelling, skin sores) after taking for just one month. I have tried to restart several times and simply couldn’t tolerate it, even when I took it every other day. My doctor says this is unusual, but from what I read here, it is fairly common.

@baygirl80 I was on Jakafi for 8-9 years before my ET converted to secondary myelofibrosis. In the latter years I was on the Jakafi, I did develop 5 squamous cells that were removed with MOHS surgery each time. I was not very cautious in the sun before I developed the first squamous cell but did start using sunscreen and wearing appropriate clothing/hats thereafter, You should have a full body exam by a dermatologist or their qualified NP/PA every 6 months if you are taking Jakafi or any of the JAK inhibitors.

Have not heard alot about Jakafi. I have had PV/JAK2 for 7 years, on Hydroxyurea for 2 years and Jakafi for 5 years it has been working well. would like to know others experience with it. Thanks

@learnandlive, I moved your question about Jakafi to this existing discussion where many members are sharing their experiences.
- Has anyone had experience with Jakafi?https://connect.mayoclinic.org/discussion/has-anyone-had-experience-with-jakafi/

You might also be interested in this PV discussion:
Anyone had adverse effects from Jakafi (ruxolitinib) for PV?https://connect.mayoclinic.org/discussion/has-anyone-had-adverse-affects-from-jakafi-for-pv/

There are many other Jakafi-related discussions. Using the group search, you can find them here:
https://connect.mayoclinic.org/search/discussions/
@learnandlive, you mention you've been on Jakafi for 5 years. Is it still working for you? What tips might you suggest for anyone starting this medication?

@baygirl80 I was diagnosed with squamous cell after 5 years on Jakifi. it was removed and am more careful in sun. last checkup all clear.