Connect
Has anyone had experience with Jakafi?
I was diagnosed with polycythemia November 23, although it is likely I had it for a significant period prior. I tolerated the hydrea well for three months, then became quite ill as a reaction to the hydrea. After trying to "restart" several times, the same reaction occurred. My oncologist then started me on Jakafi about 10 days ago and, so far, no side effects as I am tolerating the medication well. If all goes well, this is a medication that makes you feel as if you are cured as it controls HCT, WBC, platelets, and iron levels, without phlebotomy. Please advise if you have been on Jakafi and what your experience has been.
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
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
-
Like -
Helpful -
Hug
3 ReactionsHas 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
-
Like -
Helpful -
Hug
1 Reaction@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.