Has anyone had experience with Jakafi?

Hi - I took jakifi for 10 months before my stem cell transplant for chronic eosinophilic leukemia. It worked great and I had no side effects or problems with my blood counts. The only reason I came off and did the transplant is because it tends to only work for a year or so for CEL and my doctors recommended doing the transplant sooner than later. Good luck.

Oh thank you for your information, i’m hoping i don’t get much of a reaction either. Hope your transplant is successful, i know that is difficult. Best of luck.

After taking Hydrox. (500mg) for 2.5 years for PV, my PLT levels weren't coming down enough so my new Hematologist prescribed Jakafi instead. My PLTs shot way up so back to only Hydrox. but up to 1000mg a day. No bad side effects with either. Some drugs work for some, others not so much.

good to hear

I was on HU for several years slowly upping dose. Then became in tolerant and all values crashed (lost >30lb in a month). Switched to Jakafi 10 mg 2x/day. I have ET, platelets still run above normal, all other are now in range. I've never had any issues with Jakafi and been on it 2+ years

Our first experience with Jakafi was 3 years ago, my mom has ET (Jak2) her journey started with Jakafi to help control high PLT counts. Her only symptoms were weight gain, fatigue, and liver enzymes went through the roof, super high. Hepatologist had to step in to monitor.

After 2 years we saw the platelets decreased so much that immediately had to get off of it and wing off the medication until platelets slowly started increasing, but we had to switch to hydroxyurea. However, hydroxyurea made her very ill over time symptoms made her feel horrible. She lost appetite, fatigue was extreme, and she barely can do anything, her bones within a year were fragile and now is high risk osteoporosis.

Now! Guess what!? We are back with Jakafi. After taking the initiative to read some doctors notes when she was first on Jakafi we learned she was recommended and preferred choice was jakafi because of her history of breast cancer and lymphoma and had series of radiation, therefore, preferred jakafi over any other. We should have paid attention, but now we learned. Here we are attempting with Jakafi again, but with a low dose of 5mg and keeping an eye on PLT, liver enzymes, and just simply monitoring. It is a roller coaster ride for my mom, but she is brave. She will turn 70 next week and I'm just blessed to have her and shows me how strong she is, despite having meltdowns over how difficult it is not being able to do or be like before.

Stay strong, and find support that can shed light. Listen to your body even if you want to do things, just rest, eat healthy, stay active, even if it's just watering the grass/flowers, or baking a cake, or listening to music and dancing away, go to a movie, read a book, listen to podcast of motivation. Stay encouraged. For us its our faith that keeps us going. Be blessed!

I've been on Jakafi for about a year. It has kept my platelets under control but my red blood cell/hemoglobin levels have been dropping so low that I had a transfusion after 3 months of 10 mg Jakafi. Then they dropped my dosage of Jakafi down to 5 mg. twice a day. My red blood cells/hemoglobin has been dropping so low again, that I have now been switched to Ojjaara. Haven't received the medicine yet. It costs $1100. a day.
Stay tuned. I'm hoping for some better results.

Wow what a ride! What is your diagnosis? I have PV and am on Hydroxyurea for about 2 1/2 years. Keeping the platelets in check with phlebotomies very few months. My red cells are still climbing and my iron is almost nothing. Hoping that slowly goes up being I feel
Like crap. Keep us posted on your medication.Not sure how ANYONE is expected to pay for that?! We all need to learn what’s expected if/when current meds stop working. Good luck!

Is anyone having trouble with iron overload on hydrea. I have Jak2 positive pylocycthemia for a couple of years. last month my serum iron level was 68 ..3 month lather it's 170. my kidney function is in perfect shape. Any input would be wonderful.

M the opposite! My iron is crashing? PV and Hydroxyurea also. They upped the pills saying that less phlebotomies would give my body time for the iron to slowly rise BUT more pills make my hair fall out and I get tooth pain and just feel crappy.