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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.
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Hi, very sorry for delayed response, battled illness not related to PV. I would say both to your squamous question. Have not been careful with sun exposure in past but it is no coincidence with being on Jakafi. I have been assured with better protection squamous is nothing to be worried every day with intelligent safeguards. I have always been an outdoors active person and PV/JAK2 has not stopped that, just changed me to be more careful. Live without worry but always research everything and get opinions and facts. Give updates on your path and best wishes
@learnandlive was the squamous related to the Jakafi or sun exposure?
@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.
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2 Reactions@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?
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
@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.
@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 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.
@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
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1 ReactionHas anyone had an excacerbation of squamous cell cancer after using Hyderabad or jackafi?