Polycythemia Vera: Just been diagnosed

Hi all.

I am in the process of being diagnosed with an MPN. The doctor hasn't said for sure what type, but from my research it can only be PV. My medical background is sort of fitting the picture. 4 PEs 8 years ago. Totally unprovoked. Gout out of nowhere. Now my toe that had gout aches on a regular basis. I have extreme fatigue. Headaches ( I do have a headache syndrome but it has been under control for years). Pins and needles in my hands and feet. Did I mention extreme fatigue cuz that is a biggie for me. And the thing that started the process is dizziness and weakness.

Over a year ago I ended up in the ED for the dizziness. They told me I was dehydrated, my h/h was up. I pointed out that my urine showed I was not dehydrated at all. So they told me I was overhydrated and sent me home. My PCP told me the exact same thing. Desipite it never getting better.

Late last year I was finally sent to a heme/onc and he diagnosed Iron deficincy without anemia. I was to get an iron infusion. Before I could I had a minor procedure that caused more bleeding then they anticipated. So, my blood work looked great. All normal. Then after the iron it went back up. He didn't care then, but this last time he said he was concerned since my h/h has not come down.

I am JAK-2 negative, but he said there wasn't enough testing done. My next lab work isn't until August and I'm a wreck. Part of me is sure I don't have this, I don't have high platelets or WBCs. Actually, my platelets are low normal. They hover on the cutoff all the time.

I am on xeralto from the blood clots and will be for life. I wonder if that has been a good thing and kept me from being sicker since my blood is thinned out. I can't take aspirin because I also had a bleeding ulcer that almost killed me about 3 years ago.

Sorry this was so long. I am not sure what I'm looking for here. Maybe reassurance one way or the other. It has been good reading what everyone else has to say.

I think we know our bodies better than the docs do sometimes. I've been struggling to get a consistent diagnosis as well. I have all the symptoms of PV but my current doc disagrees. My former doc said I have secondary PV but he's moved away so I don't see him anymore.
Hang in there and don't give up.

I, too, have a JAK2 mutation with a low hemoglobin, slight increase in WBCs and elevated platelets. After a year of battling an iron deficiency anemia, I have gotten into the low normal range. My last follow up for anemia revealed my JAK2 mutation and now I’m labeled as having PV and am on hydroxyurea. I haven’t found anything in the literature about anemia with PV. Guess I’m in denial.
Ironically I started my career in Hematology before I specialized in genetics. So, I understand the values and symptoms.

First time joining a group here used mayo for research but now ...Im recently placed in a 6 month observation for Polycythemia Vera. We have excluded other factors, I came back negative for the Gene however my hematologist says 20% of results for negative can be false. I've had elevated RBC and hematocrit for several years now. I noticed I didn't feel well most days when I turned 60 and have been talking with doctors ever since about not feeling myself. Recently I was referred to a hematologist/oncologist and she did her process of illumination tests. I have many of the symptoms, and they come and go in the range of severity. I'm taking a slew of supplements to help and some have been good. I am in my 3rd month of the 6 month observation period, just went to the lab, and again both are elevated. I will go back in 3 more months and if still elevated she advised she will confirm the diagnosis and decide the course of treatment. I wonder if the other changes in health Im experiencing is attributed to this...

Welcome to Connect, @chella65. As you can see you’re not alone with your new diagnosis of PV. You’ve landed in the right support group. There are a number of other members who also have Polycythemia vera, many with the mutated JAK2 gene. Sometimes it can be a little challenging to get a definitive diagnosis but it sounds as though you have a good hematologist oncologist on your team now and doing regular followup appts.

There can be a number of symptoms with PV and because is generally slow to develop it can be difficult to put your finger on any one symptom. Often the first sign is itching after a bath or shower, some patients feel tired, breathless, achy, etc.
Looking through the conversations in the forum, if there are particular replies with whom you’d like to respond, just click the blue Reply button and a box will open where you can type your message. That person will be notified that there’s been a reply. Also, if you’d like to tag someone so they get a notification, simply type in the person’s @name so they get the message.

Do you have any specific symptoms you’d like to share with us? Has your doctor mentioned the need for a phlebotomy to reduced the amount of red blood in your body which will lower your numbers?

My symptoms have been a slow roll over the past say 5 years. Im at 65 next month and I have changed many of my life activities. I began noticing I stopped enjoying the things I normally enjoyed either because mostly found it too tiring and not worth the effort or I would just wake up tired and irritable. I could not figure it out until this knowledge arrived. It all makes sense to me now. I have symptoms of exhaustion, weakness, foggy mentally, sleep problems, aches, and just recently sharp pains in different parts of my body and at varying depth. I can have a day feeling just a little off or have a day where I drag myself out of bed. I was the energizer bunny never able to sit still all my life but every day I force myself to get up and move. Having been highly athletic in my early years I've got a spine no one would dare claim if they saw the xrays and I along with doctors attributed many symptoms to aging and my spine issues.
As for the medications mentioned by the doctor, she only mentioned blood draws and or possible medications when the 6 months is up. She didn't mention any names. However, there was a recent advertisement for a Polycythemia study. I did inquire about it however it was all the way into Houston and I would not dare make that travel. I wish they would have offered it at one of their hubs like in The Woodlands but it was only offered at the Cancer Center in Houston. They were doing a study on a medication. It would have been nice to participate.

It’s unbelievably frustrating when our life takes such an abrupt turn for no reason…not that having a reason makes it any easier to cope. But at least there’s a physical cause behind your shift in energy and changes that you’re experiencing.

Treatments can range from simple low dose aspirin and the occasional phlebotomy (a more refined and less traumatic blood letting than the dark ages 🙃) to medications such as hydroxyurea, Jakafi and others meant to slow the progression and proliferation of too many red blood cells being produced.
One of my go-to informational articles that’s helpful for newbies with PV is this one from Healthline.com.

Do you also have osteoporosis?

Yes, for approx 10 to 12 years I've ranged from osteopena to severe to extreme, currently at osteopena level. I've taken medications and for about 3 years Prolia which I asked to get off and started on pill form as the side affects were debilitating. I asked my hemotologist if my blood issue could be medication related because I don't recall having elevations prior to taking osteo meds but she advised no.
I also have elevated chlorestrol and hypothyroid. I take only osteo and thyroid meds. I'm working with my other main physician a DO taking a regiment of supplements and exercise and 64 oz of water. I have had changes where I have gotten infections when I hardly ever did before. More susceptible to thing.
This site is a wealth of information I haven't found other places. Thank you.

So glad to read your story. My story will officially start next month. Thankfully it's only taken me about 6 weeks to get in to see a hematologist. I'm a bit nervous - and my spouse is less than supportive. I think that's the hardest thing for me is the feeling I'm fighting this alone. I think this for sure will show a person's strength or not. I've decided to be strong and meet this thing head on. Thanks for your inspiring note. I think my strength comes from this group. Thank you folks! Carol

Meeting this new diagnosis head on is what will give you a sense of power over it. You can be proactive and not feel like a victim to this change in your life. Like you said, PV has probably been coming on for a while and it’s not going to change overnight and take you by surprise. It doesn’t have to define who you are either. But it is with you now and you’ll learn to listen to your body and make some adaptations. I think you mentioned you’re 68? I’m 69 so really, when haven’t we had to continually roll with the punches and make compromises when we’re married or have families. 😅

It’s amazing how strong we can be!! When I was going through my leukemia odyssey one of the little affirmations that came my way was, “You never know how strong you can be until strong is the only option.” We don’t set out with any preconceived notions when we’re faced with a change in health. We don’t know how we’ll react until ‘it happens to us.’ Right? ☺️ So it’s up to us to pull up those bloomers (😅) and take on another challenge.

I am sorry your spouse is less than supportive. You can see you’ve found a new tribe and we’re all here for the long haul. Think of us as sitting around the kitchen table drinking coffee and snacking on cake. Oh which reminds me, I am so weak of willpower today!! I went shopping this morning for fresh veggies and fruit for dinner tonight. We’re having friends over (and we all eat so healthy!) so I wanted to make a veggie tray and a big fruit salad for dessert. Darn if the woman in the bakery wasn’t putting out my favorite peanut cake squares. Somehow the container landed in my cart and now, there’s a piece missing. I quickly stuck it in the freezer so no one notices the gap in the tray. 😂. So much for my 99%of the time eating healthy. Guess I was in the 1% today. 🙃