Hanging in there

[Stateofmine]

I'm a 63 year old female diagnosed with PV about nine and a half years ago. I have been on hydrea since then. In the beginning I didn't really feel that much different. Symptoms were minimal. Nowadays, exhaustion comes easy and is quite extreme. Some days it's difficult just to get out of bed and I never know how I'm going to feel from one hour to the next. I just want to say to all of you out there suffering with an MPN, may God keep you strong and thank you for being out there. We can get through this together.

[WileyFrench]

Hi there - I’m also a 63 year old female, but with ET and on hydroxy urea since July 2018, although diagnosed in 2017. I’m sorry to hear about your fatigue. Does your doc say it’s due to your PV or your meds - or both?

[Stateofmine in reply to WileyFrench]

Sorry so long to reply. I would answer your question by saying, a little of both. But side effects of PV are fatigue.

[mhos61]

Hi, and welcome. I’m also 63, and have ET.

I’m really sorry to hear of your fatigue, which sounds quite severe, and presumably affecting your quality of life. Fatigue is the most common symptom in MPNs, as many on this forum can attest to.

Are your health care professionals aware of the severity of your fatigue? If not, at your next haematology appointment you should definitely discuss this.

Mary x

[Cja1956]

Hello. I am also 63 and I was diagnosed with ET 11 years ago and also PV about 2 years ago. I’ve been on hydrea from the beginning and now on Ruxo as well. I feel exactly as you do. It’s very difficult to get out of bed in the morning and the fatigue is overwhelming. I am still working but have reduced my hours considerably. It is wonderful to have found support on this site. Your doctor may want to adjust your medication. Mine have been adjusted several times over the years.

Good luck to you,

Cindy

[Stateofmine in reply to Cja1956]

Thank you Cindy and God bless you

[Ovingite]

Hi,

I'm a 69 year old male with ET and I also suffered very heavy fatigue, which I thought was down to the MPN or meds, but my GP found that I also had a vitamin D deficiency. Fixing that was easy and had a massive impact in reducing fatigue, so it might be worth asking for a vitamin blood test. It worked for me

Good luck

John

[Sheryljean]

Hi!

I am 64 and was diagnosed with PV in 2017. In 2018 I was put on hydroxy 500 mg 2x daily. About 2 months into that I was not doing well with the nausea side effect so I was transferred over to Jakafi, which has helped fantastically. I get extremely low energy at times and blood pressure drops. With the lowering of my RBC, my hematologist suggested taking some liquid iron starting at least once a week, which does seems to help. I have also started taking GNC Gentle Absorb iron supplement which are slowly absorbed and not harsh oh stomach. Not as strong as the liquid but does seem to help.

Sheryl

[Wyebird]

Thank you for posting. Now I know it’s normal to feel different one hour to the next.