Experiences with

Jakafi

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.

Is Jakafi actually a chemo treatment for my PV diagnosis? TIA for your insights. Hope you’re all doing well.

However, during a recent appointment I needed another phlebotomy and it had only been 55 days at which point my doctor and I decided to start Jakafi in combination with the Besremi. We had been very actively discussing Jakafi as a combination because of the discussions here.

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.

Anyone else on Jakafi get the shingles? I was wondering if they had anything to do with this . I’ve been on Jakafi for a year now , 20 mg a day

can jakafi cause lower sodium, chloride and sugar?anyone have this.?

I read that you can get pml taking jakafi.....is this rare or common?

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

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.

She mentioned Jakafi or Interferon. I have looked into both and after reading about weight gain being a very common side effect of Jakafi, I am worried about starting this treatment and was wondering about Interferon? Has anyone got experience of this drug or both? Thanks

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?

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.

Lymph also improved from 0.66 back to 1.00, highest reading since September despite adding Jakafi (though within the normal volatility I've seen). Neuts have held steady falling from around 3 to 1.66 back now to 1.77. Platelets 164 --> 168.

Maybe that's why my starting dose of Jakafi is higher. Also, I don't know whether it was the Peg or Jakafi since I just started Jakafi today, but I certainly have excessive gas. Anyone else experience this?

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 social life.

There are two possiblities: or Jakafi (rux) or Besremi. I wonder what would be the best solution. The spleen is not enlarged. I also wonder if there is a counter argument if the doctor wants to give me Jakafi.

Had lots of side effects from that, so changed to Jakafi less than a month ago. Platelets are already down to 271!!! Fewer side effects, so I feel like I can continue on this treatment at last. I just wanted to share what seems to be a success story!🤞🙂

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

My hemo/onco told me today that he has been reading data about momelotinib, (brand ojjaara) and it has surpassed Jakafi in terms of results.

On Jakafi now for almost a year. Platelets down from 1.1 mill to just over 400,000. But other numbers, wbc, LDH, blasts not looking great. Did a BMB 3 weeks ago. Definitely has progressed to myelofibrosis. But unfortunately, the myeloid panel came back with another mutation ASXL1.