Experiences with

Jakavi

I have primary MF and CKD stage 3, on Jakavi for almost 1 year. I was told by the hematologist that Jakavi + age contribute to worthening the kidney function. I was wondering if any of you are having kidney problems due to MF and if you have any advise on how to treat, diet, cope with it.

Should I not take Jakavi before surgery?

I am tapering JAKAVI down for GVHD (2x5mg) Is it important to take the medication each 12 hours? If I take the morning dose at 9 am and the evening dose at 7 pm for instance?

I just had a call with my haematologist and MPN specialist in Dublin and she said she will probably have to move to me to Jakavi due to the interferon shortage. She said Jakavi should help with my thyroid issues anyway?

I have been on Jakavi for 3 years and my RBC count dropped, I have circulating blasts, but only 2% or so at present, and I got very weak and breathless with the anaemia. I feel much better since the transfusion, but am wondering how long this is likely to last.

Since then I have been taking Jakavi but the specialist wanted me to have a blood transfusion in which I wasnt very happy about so I started taking iron tablets. My platelets have gone up a little so I dont need a transfusion at the moment.

I am assuming she may start me on either Pegasys or JAkavi which are the only alternatives funded in New Zealand and only available if the patient cannot tolerate HU. My Hb currently is 118, Hct,Rbc 6.31 , Platelets 168, LDH 388. My main symptom is gross fatigue plus SOB on exertion.

I am trying to lose some of the weight I put on with Jakavi, with some success, so it could be low blood sugar. Anyone else experiencing this? Thanks. Lucieboo.

Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is completely normal. I'm on Pegasys 135ml at the moment but platelets are 729 (going up) and not well controlled. The consultant suggests moving

Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of Jakavi which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day.

I started Jakavi in September 2023, and due to poor response, I was also put on Hydrea and Pegasys to slow disease progression. After my platelets dropped below 1000, I stopped the Pegasys.

I have had PV since two years. Rux started december '23. Good results with HB and HCT. HB is pretty low now 7.7 for a while. My weight has increased 10% wit the same diet. My saturation is, in rest 92, with effort I can raise it to 93/94. Long test last week revealed a very good lung condition (5,7

So, since I've been having to take Hydrea, or Pegasus, and now Jakafi, those drugs or something is really affecting my feet. I have developed neuropathy, but also it is like my feet belong to 2 different people. One peels on the bottom no matter how much lotion I put on it, and the nails on that foot

I've now been on the combination since Jan 10th. Solid update. It has been 78 days since my last phlebotomy. My HCT has been 38.8 3 weeks after, then 41.1, now 43.2. So trending higher. However, my MCV has been driving this increase and has finally become normal for the first time in years. Here's

Hello all. Looking for some insight or maybe just a glimmer of light today. So, I was diagnosed ET at 47, progressed to PV at 53 or so. Did Peg, then Besremi for 5 years, but could not tolerate interferon. On Jakafi now for almost a year. Platelets down from 1.1 mill to just over 400,000. But other

Had some blood test results given to my wife who has MF and is feeling particularly weak, now six months after starting Jakafi, though the weakness and ascites began after 2 and half months.

I am no longer on Hydroxurea was not the right fit for me. After consulting with MPN Specialist concerning side effects, he moved me to Jakafi and have had great results with this. Was diagnosed with ET in fall of 2019. I am an 89 year old female and thriving. Live alone with no help and have an active

I'm now 6 weeks on Besremi + Jakafi (5 mg 2x daily) Today my WBC measured low for the first time at 2.83. Doc thinks these numbers have stabilized. Three weeks ago I was over 4.0 HCT was 41.1 up from 38.8. I will have to track WBC and NEUT # closely.

Hi everyone I was diagnosed with PV about 11 years ago and have been on Hydroxycarbamide since with venesections from time to time. I have now reached the point where Hydro is not really working anymore in controlling my platelets and my red cells are much too low so my consultant suggested moving

I was on Hydrea but suffered extreme fatigue. Now I am on Jakafi and have numerous side effects (stomach pain, diarrhea, fatigue). When I was on Hydrea my blood counts were normal. Which drug will keep my counts stable for the longest period of time?