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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

nypara66 | @nypara66 | Jun 20 6:14am
In reply to @pamdg "Four years for me. I take 5 mg twice a day. It definitely helps with my..." + (show)
@pamdg

Four years for me. I take 5 mg twice a day. It definitely helps with my PV side effects.

Jump to this post

What side effects are you having with PV? Lately I’m having stinging and burning on the top of my hands and my feet up to my knees. I am on hydroxyurea and it’s super cheap and keeping my platelets under control. I heard your med is very expensive? I don’t have prescription coverage 😒

REPLY
albertedward | @albertedward | Jun 19 12:35pm

Glad to hear I am only been on it for 5 months.was told it is 18,600 for 20 pills.Alot of money if it does not work.So far so good Thanks for your reply.

REPLY
2 replies
pamdg | @pamdg | Jun 19 10:24am
In reply to @albertedward "Has anyone one been on Jakifi for more then 3 years." + (show)
@albertedward

Has anyone one been on Jakifi for more then 3 years.

Jump to this post

Four years for me. I take 5 mg twice a day. It definitely helps with my PV side effects.

REPLY
1 reply
jackiecarey | @jackiecarey | Jun 19 8:05am

I read a woman was on Jakafi for 20 years and proud to say she was 92...that post has stayed with me since I read it a year ago..

REPLY
albertedward | @albertedward | Jun 18 9:22am

Has anyone one been on Jakifi for more then 3 years.

REPLY
1 reply
beebo | @beebo | Feb 12 12:17am
In reply to @nohrt4me "Straight Medicare does not pay for Rx. Feds are trying to set caps on some common..." + (show)
@nohrt4me

Straight Medicare does not pay for Rx. Feds are trying to set caps on some common drugs like insulin, but a drug like Jakafi for orphan diseases like ours won't make it on that list.

You can buy advantage plans during open enrollment that may limit your co-pay. You can see if the drug mfctr will float you a lower price due to financial hardship. (Usually these last for just a year.) Or you may have been given a Medicare plan with drug coverage from your employer as a benefit when you retired that covers meds. Some seniors here in Michigan get their drugs cheaper from Canadian pharmacies.

Most Medicare drug plans do have "tiers" of meds in their formularies that are covered at certain rates. The formulary changes frequently. Call your Medicare plan to see what it pays.

If you are a low-income senior, your best bet is to ask for generics. And to consider writing your elected officials about those 20-year patents that drug makers are given during which they can charge prices for new drugs that put them out of reach for many of us.

Jump to this post

Thanks for this info.

REPLY
tampakaren | @tampakaren | Feb 11 3:39pm
In reply to @larrycraven "I started Jakafi about two weeks ago and so far so good. Medicare now as a..." + (show)
@larrycraven

I started Jakafi about two weeks ago and so far so good. Medicare now as a plan when you pau 3,300 in the coverage you pay no more for brand name drugs for the remainder of the year. Jakafi was 3,300 a month and now its free for the rest of the year. Save me 36,000 per year. Check it out.
Larry

Jump to this post

Hi Larry,
Glad you are doing well on Jakafi. I was on it from 12/22-8/23 in combination with Vidaza injections 5 days every 28 days. Unfortunately because of mutations it didn’t work for me. I have read many very favorable outcomes for many people and I hope you will be like that.

REPLY
nohrt4me | @nohrt4me | Feb 11 8:57am
In reply to @beebo "Is Jakafi covered by Medicare? What is the cost for a monthly dosage? Thanks." + (show)
@beebo

Is Jakafi covered by Medicare? What is the cost for a monthly dosage? Thanks.

Jump to this post

Straight Medicare does not pay for Rx. Feds are trying to set caps on some common drugs like insulin, but a drug like Jakafi for orphan diseases like ours won't make it on that list.

You can buy advantage plans during open enrollment that may limit your co-pay. You can see if the drug mfctr will float you a lower price due to financial hardship. (Usually these last for just a year.) Or you may have been given a Medicare plan with drug coverage from your employer as a benefit when you retired that covers meds. Some seniors here in Michigan get their drugs cheaper from Canadian pharmacies.

Most Medicare drug plans do have "tiers" of meds in their formularies that are covered at certain rates. The formulary changes frequently. Call your Medicare plan to see what it pays.

If you are a low-income senior, your best bet is to ask for generics. And to consider writing your elected officials about those 20-year patents that drug makers are given during which they can charge prices for new drugs that put them out of reach for many of us.

REPLY
1 reply
beebo | @beebo | Feb 11 12:01am

Is Jakafi covered by Medicare? What is the cost for a monthly dosage? Thanks.

REPLY
1 reply
ann7449 | @ann7449 | Feb 10 8:00am
In reply to @loribmt "How are you feeling today, @ann7449, after being on Jakafi for a couple of days?" + (show)
@loribmt

How are you feeling today, @ann7449, after being on Jakafi for a couple of days?

Jump to this post

Everything fine so far

REPLY
View MoreView Less
Please sign in or register to post a reply.