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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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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.
Just had a UTI check last week and as usual nothing there.
The prickly feet thing is always there especially at night.
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
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.
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3 ReactionsThank you - I already do so, and indeed it assuages the burning. 2x day, early morn and at bedtime.
My dr wants to start me on Jackafi, but I can’t afford the large co pay. Have applied to IncytesCare, but no reply yet. And I’m worried about side effects.
Hydroxyurea caused elevated liver enzymes.
After having terrible side effects while taking HU my doctor had me switch to Jakafi. Three years and no problems. It has really helped with PV side effects.
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2 ReactionsI took Jakafi, but for a different reason. I took it for Graft Versus Host Disease following a Bone Marrow Transplant. It worked. I had no problems with it.
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1 ReactionCan I ask you if you suffer from the itching ? I have yet found anything that helps that except antihistamines. I’m on Hydroxyurea with no side affects but it doesn’t do anything for the uncontrollable itching. Thx
Yes same thing here. My husband took it for graph vs host disease and didn’t have any trouble. But very expensive. Hope all continues to go well.