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

I too have found that heavy exercise really helps. I returned two weeks ago from an 9-day wilderness backpacking trip with four long days (10-, 11-, 12-, and 13-miles) of hiking between camps, and feel completely restored. I'm sleeping better and can work through the afternoon fatigue with an occasional short nap and by going out and tackling gardening chores in our southern heat and humidity. I've been on hydroxyurea intermittently for 18 months, finally getting platelets down to 469,000 taking 500mg daily.

Ive been diagnosed with PV one of the MPN'S and I could tell something was wrong because my cell numbers were increasing over time and was told dehydration several times..Finally the numbers went over normal so I made an appointment with a hematologist..He knew without the Jak2 it was PV but did the Jak2 which was positive. My problem with this hematologist is when I asked questions if he didn't like it he'd say "don't ask questions like that" well that was the last visit with this guy. I'm with another Hematologist at another facility who wanted their own Jak2, bone marrow and lab work and who has made me a partner in my care. I wouldn't think twice about changing hematologist's if your not getting answers..Your symptoms sound troubling to me. I'm 76 you're a young mother, please consider getting into the weeds and find out what's going on....I'm from the medical profession and know how to navigate the system, they don't intimidate me....Don't except what you know is not right. Your inate self is almost always right. Good luck.....

My experience was a bit similar. The primary care provider poo-pooed my symptoms to fibromyalgia or depression. He offered me a prescription for antidepressants. I got up, walked out the door, and found a new doctor. He was probably doing the best he could with the knowledge he possessed, but I knew my body was screaming for help. Let’s take a minute out of our day to spread the word with thoughtful conversations.

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.

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.

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. ?

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..

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 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 .

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