Experiences with

Jakafi

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

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.

Hi I have recently changed from Peg Interferon to Jakafi and I am struggling with side effects . I have taken Peg for around 10 years and it suited me well. However I have developed Rheumatoid Arthritis hence the change to Jakafi .

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

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

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

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

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

I was diagnosed with PV in 2015 and I have been on Jakafi since 2022. Lately I've been experiencing painful leg cramps at night, mostly in thigh muscles. It was suggested that I take a Mg supplement; this seemed to work for a few weeks, but now the cramps are back. Any suggestions?

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.

im supposed to start Jakafi next week and I’m very nervous about that after looking at all the side effects!

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?

The thing is the junior doctor with whom I talk says the BMB shows no progression but my counts show signs of myelofibrosis and they want me to start Jakafi!! I am terribly perplexed and I would like your advice on this. I hoped for Besremi. Should I insist?

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.

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.