How bad is a diagnosis of Polycythemia Vera?

My name is Joe

Yes it was positive medium Deterioration. Joe my husband was on Hydrea but his legs started to get weak and painful to point he had no balance and had to crawl around by hanging on to furniture or railings. So they stop hydrea over month ago. Now he is walking again but still laying in bed most of the time except for walking the dog or maybe little yard work. Then back to bed. His platelet numbers went down from 700-800 to 450. He had two phlebotomies and they were stopped red cells are low. But now they want to try new medicine a Jak2 inhibitor med. In a week or so. Just not sure about anything. His calcium levels were high so they did some kind of IV treatment and is come down some. That did chest ct scan no lung cancer found. Now checking the parathyroid or pituitary gland see if there's something going on there waiting for ultrasound. I just wished and he wishes he had some more energy back somehow. So we are just waiting for new meds and any new findings. Thanks

Wonderful news that there’s no sign of lung cancer! That had to be a relief. I know this blood condition excitement is relatively new to you and your husband...and frustrating. There can be a bit of a balancing act to get the proper medication and dosage when first diagnosed with a blood condition. Everyone’s body responds differently because there are so many variables from person to person. So it can take a little ‘twisting of the dials’ to get things just right. In your husband’s case, the JAK2 mutation basically interferes with the ability to turn off the switch that controls the production of red blood cells. So he had an overabundance of red cells which can be a problem, requiring him to go on medications to lower and control this. Red blood cells carry oxygen giving the body energy. With the decrease in his red blood cells he may notice a change in energy/endurance.

HU is considered first line medication for treating PV. It has a good track record and from other members sharing their experiences in the forum it’s pretty well tolerated for the most part. But it’s not for everyone and fortunately there are other options. Hopefully this new medication will be better tolerated for him and he’ll find a happy balance with control of the disease and his energy level.

These are lovely photos of you and your husband! Handsome guy! (Can I say that?? 😉

Joe is starting jakafi tomorrow. He had bad reaction to Hydrea so stopped it and he's better from side effects and now going to try the jakafi. I hope he will get some energy soon. His so tired all the time. I hope he doesn't get side effects from this pill. Dr starting him at 5 mg twice a day. Glad to hear it works for you thanks.

I just failed hydrox and suspecting Jacafi to be offered at my next appointment...Keep us posted on how your ne medication works for you..Ive heard patients do well on it. Good luck.

Everyone handles Hydrea differently, some handle it well for a time and then start having problems. I'm at MDAnderson who says they have other drugs if a patient fails hydrea. Lying in bed which Ive been through, too is not a quality of life that would make most people happy.. I wish you luck.

I was diagnosed with PV with a JKA2 mutant almos5 2 years ago. I will be 77 in July.
Initially had some blood letting done but them prescribed Hydrea on alternate days...500mg per day to be reviewed at later stage. I felt uneasy even taking such a low dose. I was falling asleep even at that. Met with Haemotologist to discuss. Was given 3 options, change to another drug, have blood letting only ( which I felt was safe) as NO side effects, OR go on a reduced dose of Hydrea 1 tablet 500mg 3 days per week.

My platelet reading was coming down gradually after the change, but as my HCT was within the normal range then bloodletting was ruled as anaemia could set in even though my HCT was just just a fraction below the upper limit reading. My platelets were high, again just below the upper limit.

I was going to be left on the higher dose of Hydrea & perhaps increased dose had I not protested!!

Your husband should have a discussion with his Haematologist re possibility of lowering the daily dose, ask for a printout of his blood results after each blood test. I did so, found it very helpful to look back on & compare the readings. Am having over then phone consultations since end of last year.

I have to attend the warfarin clinic every week as had a blood clot at the back of my knee, was put on warfarin initially over 2 years ago. Was taken off warfarin after 6 mths as 6 mths is the duration for taking warfarin, unless another problem arises.
I got a lung clot approx 3 months after coming off warfarin. Am back taking it daily with weekly blood test as am on other tablets for years which interact with warfarin so have to stick with it.

I did question if I needed to take hydreaa & warfarin concurrently, but were hesitant/didn't get a clear answer from them!!!!

Hope this info will be of some assistance to you. We have to remember that every human body is different so what is suitable for one person may be entirely be the opposite for the next!

Good Luck!

I have been on jakifi 25mg 2x per day for past 5 months with no side effects except constipation. I have CEL, so not the same diagnosis, but same medication. Good luck. I hope the jakifi works for your husband.

Thanks for comment. Joe has
polycythemia vera (PV Platelets go high sometimes the red blood cells go high. They just doesn't have any energy but he's only on 5 mg twice a day, but it is been a month and a half and I think they're gonna have to raise it but it's good to know what you can take and it's OK. I just hope they can get this under control and he has a little energy. He's very, very active guy in the 70s like he was 50 until his head on now he's 77 and he could Mow Grass walk his dog go back to bed so it's hard to watch and it's hard for him. Just any advice you'd have an energy would be wonderful and I hope everything goes well for you.

Hi - I have had fatigue issues for many years due to Lupus (in addition to my recent CEL diagnosis). Fatigue is one of the hardest things to get relief from and I have found mainstream doctors to be of no help in regards to fatigue - not really their fault, they are not trained to assess and treat fatigue. I don't have any good answers to fatigue, but here are some things that have helped me get on top of fatigue (in no particular order):
1. Be kind to yourself. Don't be hard on yourself for feeling fatigue - it's a new normal for now, NOT FOREVER.
2. Push yourself to do a little bit each day - like walk - get out in the sunshine.
3. Experiment and do a little more than you think you can and see if that makes your fatigue worse or if it stays the same. If it stays the same, then it's better to do more of that activity because psychologically, when physically possible, it's better to be doing something than sitting in misery with your fatigue.
4. Diet - I have no conclusions on the "best" Diet but I have found that cutting out or minimizing processed foods, sugar and alcohol helps a little bit. Also, some people are sensitive to gluten or dairy or something else - so experiement with your diet. Or see a functional medicine nutritionist. To that end, some people find intermittent fasting to be very helpful - I like Dr. Jason Fung and Gin Stephens for fasting information.
5. Ask a pharmacist and your doctor if any of the current medications can cause fatigue. If so, one by one, see about replacing them. Don't replace all at once or you'll never know what helps. Pharmacists are experts on drugs and a great resource.
6. Try some mind/body things like: meditation (there are sitting, walking etc), yoga, tai chi, qi gong.
7 Exercise: Try to do as much as you can, a simple walk, chair yoga any kind of resistance training. I have also found Essentrics by Miranda Esmond White to be helpful for simple stretch/strength. But pay attention to if you feel better, worse or the same after you do it (directly before, hours later and next day).
8. Consider seeing a functional or integrative doctor. Mainstream doctors have never been able to help me with fatigue - it's not a dig at them - they have saved my life a number of times.
9. I have found Radical Remission and their group to be helpful and inspiring for general health and well being while battling cancer or chronic disease. (they have books, website, podcasts)
10. Consider a therapist because sometimes it helps to talk to someone that is not a friend or family. And they may have good mind/body tips (I have found cognitive behavioral therapy very helpful in reframing negative thoughts so you feel better even with the fatigue).

Now as I list all of these, please do not try to do all at once or it's overwhelming. And don't stress about which one is best or where to start - I say this because I do both of the above and drive myself crazy. But I have learned, anything is better than nothing - but some days nothing is ok too - start small - and give yourself grace and believe that it is not forever - because you will find some relief along the way.
Best wishes for a reduction in your fatigue and good health moving forward!
Debbie