1. < Blood Cancers & Disorders

Has anyone had experience with Jakafi?

Posted by papa6275 @papa6275, Aug 5, 2023

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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milkweed | @milkweed | Aug 18, 2023
In reply to @inevanmac "Hi @papa6275 - my diagnosis was JAK2 PV in May ‘22. Like you I did not..." + (show)
@inevanmac

Hi @papa6275 - my diagnosis was JAK2 PV in May ‘22. Like you I did not tolerate Hyderabad and it didn’t do me any good, despite 3 phlebotomies. Switched to Jakafi 10 mg and blood count and platelets came down very slowly but not enough or stabilizing my so… changed by haematologist to 20mg since Dec and results much better and platelets still going down slowly. The only side effects I’ve had is sensation of heavy legs (of and on), tingling in toes and feet (have been told « scrungy » toes is side effect) and very irritating sensation of oncoming UTI with pressure to urinate, but it is never a UTI. (Phew!) I also réalise I’m tired more quickly and can at times be very irritable. 😊😊
Female, 75 yrs of age. My check-ups have gone from monthly to 3m and next one is with 6m gap.
Living life as best I can and just getting on with it.
Hope some of this help you going forward. All the very best.

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For the UTI sensation try D-Mannos ( it’s concentrated cranberry sugar) it’s OTC kinda pricey but it has worked for me. I take it when I take my 2/ day Jakifi dose.

REPLY
1 reply
nononcents | @nononcents | Aug 17, 2023

Greetings, @papa6275 I have Polycythemia vera. After a couple of years, I no longer tolerated Hydroxyurea. 10 minutes in sunlight my skin broke out in blisters.

I've been on Jakafi for over 18 months and feel fabulous most of the time re the PCV. But I have other diagnoses, too. I have not needed any phlebotomies since starting Jakafi. My labs look so "normal" now.
The only problem that I have is getting short of breath(SOB) not related to congestive heart failure. It can be tough to sort out with comorbidity is the problem. In particular, for me, is when my specialists move to another job. Once the new hematologist came on board, he suggested that I temporarily cut my dose by 5mg. - That fixed my SOB when not related to my minor heart failure or allergy. (SOB can be a side effect.) This was an easy fix when raising my feet for the CHF did not help.
Please note that this is not medical advice for anyone else. I'm going to guess that most of us on Jakafi have more than one "disease" that complicates the management of our individual health care.
Overall I feel frustrated living with fairly rare disorders and uncommon medications. With that said, the Jakafi is the least of my worries and the most expensive. (I have other meds that I have cross-over disease symptoms and the doses amounts are not getting adequately adjusted.)

I get funding along with my drug insurance. This January I picked up my Jakafi first and met my deductible with the funding over it all. By February, I passed that "doughnut hole" for my other very expensive drugs. Be sure to talk to your pharmacy department that helps with funding for the most savings.
You may want to carry with you the pharmacy inserts in case of emergency as Jakafi is a specialty drug.
I hope this helps.

NoNonCents

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pamdg | @pamdg | Aug 17, 2023

Just had a UTI check last week and as usual nothing there.
The prickly feet thing is always there especially at night.

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inevanmac | @inevanmac | Aug 17, 2023
In reply to @pamdg "I have the very same side effects however I feel so much better then before Jakafi." + (show)
@pamdg

I have the very same side effects however I feel so much better then before Jakafi.

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That’s really good to hear. I must admit, I’m having a good summer on all counts except the UTI sensation.
Enjoy the well-being and good results.

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pamdg | @pamdg | Aug 17, 2023
In reply to @inevanmac "Hi @papa6275 - my diagnosis was JAK2 PV in May ‘22. Like you I did not..." + (show)
@inevanmac

Hi @papa6275 - my diagnosis was JAK2 PV in May ‘22. Like you I did not tolerate Hyderabad and it didn’t do me any good, despite 3 phlebotomies. Switched to Jakafi 10 mg and blood count and platelets came down very slowly but not enough or stabilizing my so… changed by haematologist to 20mg since Dec and results much better and platelets still going down slowly. The only side effects I’ve had is sensation of heavy legs (of and on), tingling in toes and feet (have been told « scrungy » toes is side effect) and very irritating sensation of oncoming UTI with pressure to urinate, but it is never a UTI. (Phew!) I also réalise I’m tired more quickly and can at times be very irritable. 😊😊
Female, 75 yrs of age. My check-ups have gone from monthly to 3m and next one is with 6m gap.
Living life as best I can and just getting on with it.
Hope some of this help you going forward. All the very best.

Jump to this post

I have the very same side effects however I feel so much better then before Jakafi.

REPLY
1 reply
inevanmac | @inevanmac | Aug 16, 2023

Hi @papa6275 - my diagnosis was JAK2 PV in May ‘22. Like you I did not tolerate Hyderabad and it didn’t do me any good, despite 3 phlebotomies. Switched to Jakafi 10 mg and blood count and platelets came down very slowly but not enough or stabilizing my so… changed by haematologist to 20mg since Dec and results much better and platelets still going down slowly. The only side effects I’ve had is sensation of heavy legs (of and on), tingling in toes and feet (have been told « scrungy » toes is side effect) and very irritating sensation of oncoming UTI with pressure to urinate, but it is never a UTI. (Phew!) I also réalise I’m tired more quickly and can at times be very irritable. 😊😊
Female, 75 yrs of age. My check-ups have gone from monthly to 3m and next one is with 6m gap.
Living life as best I can and just getting on with it.
Hope some of this help you going forward. All the very best.

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Aug 15, 2023
In reply to @timt347 "I was on Jakafi for GVHD and I had no side effects I can remember, and..." + (show)
@timt347

I was on Jakafi for GVHD and I had no side effects I can remember, and it worked.

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Hi @timt347 Welcome to Connect. Since you’re new to the forum this would be a great time to join in with other members who have had bone marrow/stem cell transplants.
If you’d like to share your story of what brought you to the world of SCT and your experience with GVHD there are several discussions in the Blood Cancer group.

Here are a few links for you to check out…feel free to jump in to any conversation:

~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

~Snapshots of hope: Life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

~Chronic GVHD ~ Let’s talk about it!
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/

How long ago did you have your transplant? Do you still have any lingering chronic gvhd?

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timt347 | @timt347 | Aug 15, 2023

I was on Jakafi for GVHD and I had no side effects I can remember, and it worked.

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1 reply
Steve1958 | @alohasteve | Aug 15, 2023
In reply to @tampakaren "Hi Steve My case is similar to yours. I was treated with Hydroxyurea for7 yrs for..." + (show)
@tampakaren

Hi Steve
My case is similar to yours. I was treated with Hydroxyurea for7 yrs for ET JAK2. May is 2022 diagnosed with myelofibrosis JAK2 I have been on Jakafi, Hydroxyurea and completed six cycles of Vidaza chemo injections. Unfortunately my White Cells just keep rising. So up and down with meds. I just entered a clinical trial using Fedratinib and Hydroxyurea. It will most likely take a couple months to see if there are any positive results. Best of luck to you with the stem cell transplant.

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Best of luck to you, as well, @tampakaren. We have all been dealt a unique set of circumstances and recommended treatments are across the board. I hope your new clinical trial works out for you. Keep the faith! Carpe Diem!

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tampakaren | @tampakaren | Aug 15, 2023
In reply to @alohasteve "I am now 65 and have been taking Hydroxyurea for 10 years to keep my platelets..." + (show)
@alohasteve

I am now 65 and have been taking Hydroxyurea for 10 years to keep my platelets in control from Essential Thrombocythemia with JAK2 mutation. I've had no known side effects from Hydroxyurea and have lived, as though I didn't have ET. Unfortunately, my disease has transitioned into Myelofibrosis with a TP53 mutation and Splenomegaly (an enlarged spleen), a common result of Myelofibrosis. I've been taking Jakafi for 3 months, with the goal of reducing the size of my spleen, before a scheduled Bone Marrow Transplant (also known as a Stem Cell Transplant). I have had no known side effects from taking Jakafi, along with Hydroxyurea. What I have found from reading many blogs and doing research is that everyone is unique in their reaction to both medications and the type of blood disorder. My humble advice is to do your research from credible sources, ask your doctor many questions and get a second opinion, if you feel you need one. It can be a daunting task to live with our blood disorders, both physically and mentally. I know personally, my biggest challenge lies ahead. Best of luck to you. Carpe Diem!

Jump to this post

Hi Steve
My case is similar to yours. I was treated with Hydroxyurea for7 yrs for ET JAK2. May is 2022 diagnosed with myelofibrosis JAK2 I have been on Jakafi, Hydroxyurea and completed six cycles of Vidaza chemo injections. Unfortunately my White Cells just keep rising. So up and down with meds. I just entered a clinical trial using Fedratinib and Hydroxyurea. It will most likely take a couple months to see if there are any positive results. Best of luck to you with the stem cell transplant.

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