Experiences with

Jakavi

Should I not take Jakavi before surgery?

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.

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.

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

My dilemma is that I don't know the degree of effectiveness of the Imetelstat, and would almost certainly have to suffer my original bad symptoms when I stop using Jakavi.

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?

Hi All, lost the plot again because of hospital stay and info coming at me from all sides. Is Jakafi actually a chemo treatment for my PV diagnosis? TIA for your insights. Hope you’re all doing well.

I have been taking two 10 mg a day since September 2023 and my platelets are now 1.3 million where it was holding them in the 700’s. Does anyone know if it stops working after such a short time? My hematologist is prescribing me an extra pill a day, which seems like a Band-Aid over my problem.. just

I just received back my allele burden and it has finally fallen from 14.5 in April 2024 to 8.45. It will be interesting to see what happens now since I've only been on the combination a short time. But I'm definitely happy with this. My HCT is still not under control, but things continue to trend in

anybody on here have low resting blood sugar level while taking Jakafi?never had this before only since I have been taking jakafi.......and the reason I know is I stopped for 3 weeks and sugar went back up and now that im back on sugar level is low.

PV positive. Discovered in August 2020. I have been on Besremi since May 2023, but only on the full 500 mcg dose of Besremi since June 2024. My platelets responded very quickly from 1.1M to between 200 and 300k within 6 months of starting the Besremi. However, my HCT has been very stubborn. I have

Is there any connection between Jakafi and eodema of the ankles thighs and mostly abdomen? I understand there can be weight gain associated with Jakafi,but thought it was an increase in appetite and reduced spleen size that was responsible. Neither is applicable in my wife's case, just water retention

Rux is currently 2nd line after HU and Bes. This was a direct issue for me when my new medicare part D denied my Rux Rx even as I've been on it approaching two years. They said I must have tried HU and Bes to be approved. I have, HU had more sides and regulars know how Bes turned out. I was approved