I have JAK2 ET and MPN: Anyone else have these symptoms?

I highly recommend you see both an MPN specialist and an ophthalmologist. Best wishes, Eileen

I have similar issues with PV. It’s been a few years. I have opted not to take any medication other than baby aspirin. My platelets are stable at 700 and WBC at 18. I have fatigue and weakness all of the time. However, I have found like you, I’d I do early morning, moderate exercise I feel much better. And throughout the day, I will stop my work or resting, or whatever I am doing, and do a short exercise/cardio video and my oxygen level remains at 98% and heart rate 75-80. I am a,ways reinvigorated. I say moderate as I am cautious in moving. Slower pace, 15-20 minutes of movement and The energy level rises for a few hours. I had a similar thought as you, maybe endorphins …..maybe depression or sadness causing the tiredness/ fatigue. Whatever, just keep doing what I can. Volunteering to help and staying in touch with friends and family. I pray a lot and have been better at letting go and letting God take a hold of me…..also, I do research dietary issues that might help as well.
Gods blessings to you.

❤️

Thanks so much as it is so strange as my bloodwork just came back really quite good?

I was diagnosed two years ago with PVCV but doctored for two years before that with the itching. All of a sudden the blood work and a bone biopsy confirmed PCV with Jack 2. I do notice shortness of breath at times. I was on Hydroxyurea for 6 months Until my platelets dropped. Right now I take one baby aspirin a day. I do have ear and headaches slight but constant and my oncologist. Hemotologist says it is from the PCV. I also find that keeping busy and exercise does make me feel a lot better. I have chosen to live with this disease, and not let this disease determine how I live. None of us ever know how long we have anyway, I research all the time and hopeful that maybe someday they have a cure. Hope you find some answers for you, make sure you ask tons of questions and keep yourself informed. Remember some people live 20 years or more with this disease .

Thank you for sharing this info
I too have PV and am on hydroxy and blood thinners
I feel much better if I exercise but my main problem with this blood disorder is itching mainly at night and restless
I have venesections roughly every two months but I keep positive and manage my blood works
It’s good to share symptoms

I myself noticed that my red red and white cells were increasing over time..When I brought it to the attention of my family doctor several times I was told several times it's dehydration. this continued until one day my lab work went over normal (I'm from the medical profession ) knew it wasn't dehydration and made an appointment with a hematologist. He knew immediately it was PV without the Jak2 although he did do the blood test and it was positive. I was told it's a rare orphan blood cancer and few doctors have had any experience with it. I was also told don't ask certain questions. I decided this hematologist isn't a good fit so then I went to MDAnderson where in the past I went for breast cancer. The hemotologist asked to do the jak2 and lab work again ,of course I said yes followed by a bone marrow..I'm on hydrox my doctor has made me a partner in my care which had made a huge difference for me..I have fatigue like many of you speak about and someone on this site said" it's our new normal.'"Which is so true and helped me accept my diagnosis..I only wonder if more people would be diagnosed before a clot hits the heart, brain or lung with the autopsy missing the root cause if more doctors were aware of these rare blood cancers. It's no joke and does affect our quality of life.. Delaying or missing the diagnosis is a huge misstep..

I was really surprised to find out that my primary doctor, dermatologist , ENT, eye doctor all knew quite a lot about the disease. I actually see 2 Hemotologist, oncologist as I live 6 months in Florida and 6 in Wisconsin. They both agree on my treatment. New normal is right. Do you ever have itching. ?

Jerkin and everyone else, good morning,

Once in a while I do have some itching which I ignore, no scratching ever and no over the counter meds for this symptom. One thing I found that helped, well maybe a couple; I don't ever take a bath, I don't shower everyday instead I use a sponge bath and don't use anything on my skin with alcohol in it...In other words, if you use cream on your skin watch the ingredients..Other than my face I use aquaphor (advanced therapy ) it's thick but it truly works for me. when I had breast cancer they suggested I use it after radiation...So I went to it for my skin to avoid the itching before it starts. I use this for everything other than my face which I use cepaphil cream my dermatologist suggested it. I drink a good 90 oz of water each day which hydrates from the inside. and thins the blood both it's very effective. I stopped feeling sorry for myself and accepted my "new normal" as someone suggested on this site, it works..Trust me when I say I get this is difficult but manageable and we're going to live a long time with watchful care,,There are many out there much, much worse off then we are,,Hope some of this helps, don't be a stranger..We may have an orphan blood cancer but this site offers us a support system and I'm grateful for it.

Thanks so much for your input. I do find antihistamines help. Like you I don’t bathe every day. I’m 75 and plan to live along time with this nuisance diagnosis.