Jakifi dosage

[Jerrymohler]

Just started on Jakifi. 5mg twice daily. Weekly CBCs with doctor consult. Recent Myelofibrosis diagnosis. Anybody tell me about experience with increasing dosage? Side effects? Benefits? I’m 73 yr old male. Would love to talk to other myelofibrosis patients.

[katiewalsh]

Hi Jerry, I’m unable to help answer your questions as I’m “pre-fibrotic MF” & on HU. But Mazcd, our administrator, links people up with “buddies” whenever possible if they want one. You might contact her for a buddy, but you can also post a more specific question, like “Looking for advice about Jakifi,” or “Want to talk with other MF Patients,” or “Anyone with MF?” Hope you get some answers & contacts, Jerry. Take care. Katie

[socrates_8]

Hey Jerry...

You should find plenty of other MFers around here...

I am 60yo & Post ET / MF. My Driver mutation is CALR+ Type2, & I am ASXL1+ also with Type Von Willebrands Syndrome (VWS).

Hence, just being MF does not necessarily mean that we will all have the same experiences in our MPN journey etc...

Personally, with my very high platelet regime (900s-1M) for the past 8 months. I was beginning to believe that I might soon be experiencing yet another TIA (minor Brain Stroke – had 2 already).

However, I recently convinced my medical team to allow me to try Methotrexate (MTX), and my Platelets have now been reduced to 832 and falling, I believe...

Prior to my commencing on Jakafi, I was not enjoying my symptom burden much at all... Very poor Quality of Life (QoL): Enlarged spleen & early satiety; Extreme fatigue & Brain fogs were ever present, bone & joint pain, Restless Leg Syndrome (RLS)... and others...

Most of those symptoms are much less burdensome to me today

I have been alternating between 20mg & 25mg b/d for over three years now...

I am sure that your MF situation might be somewhat different to mine...

Nevertheless, I believe that Jakafi improved my QoL immensely. I doubt I would be even trying to achieve all of the things I am doing today without my being on Jakafi... (?)

Hope something here helps you Jerry...

Best wishes

Steve

[Ettiel]

Hi Jerry,

Like you, I have recently been diagnosed with Myelofibrosis (post PV) and like you was put on Jakavi 5mg twice daily. After two weeks my dose was doubled to 10 mg twice daily. The reason for this was that the lower dose was just to see how I tolerated the drug. I noticed an improvement generally after only a fortnight on this drug. I had a very poor appetite due to swollen spleen and I have started to eat more and enjoy my food again. This in itself has made me feel better. Itchy skin has also improved. I still suffer from fatigue. The only side effect I have noticed is quite a bit of bruising on my legs and arms. Haemo says he doesn’t think it’s due to the Jakavi but I feel sure it is as it only started after I started to take it. However, he is very pleased with my blood results so isn’t worried about the bruising.

Generally, however, I’m pleased with this drug so I would say don’t be too worried about the dose being increased unless, of course, the 5mg dose is not agreeing with you.

Best of luck,

Ettiel

[beetle]

Hi Jerry. I have been on Jakafi since 2013. I am on 15mg x2 daily. It is now showing signs of not working as well for me with my spleen having enlarged and more bone pain recently. Of course the MF itself will have progressed over that time too but I am fortunate in that in my case progression seems to be slow. I have so much to live for and as I never expected to reach 70 which I did this year I am now planning to keep going for a while yet!

Good luck with your experience of jakavi

[MichaelS]

Hello Jerry, I am 73 and on 10mg Ruxolitinib twice daily. I was diagnosed with PRV way back in 1983 and was on various doses of hydroxy' for most of the time, until it turned to MF in about 2010. I was put on Rux at the end of 2013. My swollen spleen disappeared very quickly, the mouth ulcers stopped and the Rosecea disappeared from my face. I have had two skin cancers dealt with by skin grafts, one on the face and one on the top of my head, which could have been caused by the Rux, but everything else has been good for me. So take care with sun protection.

I hope all goes well with you. Li've life as normally as you can,

Best wishes from Michael

[Cja1956]

Hi, Jerry,

I'm post ET/ MF, diagnosed in September. I was on Jakafi for the last 3 years along with Hydrea. I've also been on anagrelide at various times over the last 11 years I always had the least side effects with Jakafi. My new hematologist ( who diagnosed me with myelifibrosis), long story, recently took me off of Jakafi and put me on a brand new medication called Inrebic (brand name fedratinib) this week. I'm now on weekly visits and EPO injections to keep up my hemaglobin. I was definitely showing benefits on the Jakafi and I was hesitant to start a new drug but we'll see. Hope all goes well for you.

[astros]

Jerry, I am following your post. My husband was only diagnosed on Oct. 25th with PMF, and although I was conducting research on MPNs before last Friday, I am now in high gear as I want to learn as much as I can. We are in the Dallas/Fort Worth area but plan on visiting the MD Anderson center in Houston to see Dr. Verstovsek. Our local hematologist recommended Jakafi but nothing else for now. I want to know more about other drugs and the experiences of patients who have tried various treatments. My husband has been itching for 2 years, but no doctor had a clue until recently. We don't know if he suffered from pv or et prior to this diagnosis. This community seems to be great at sharing very useful information. All my best to you, and I will share any information that we are provided.

[StreetPastor]

Hi I’m 52 and recently had the M.F diagnosis after eight years of E.T. Been on Rux/Jakavi for about three weeks and no side effects other than skeletal pain which started eight years ago straight after going on medication for E.T.

[Osteomyelio]

I was on Jakafi but am now on anagrelide for platelet control. Live in Florida and diagnosed Myelofibrosis in 2014. This web site is very helpful