PV with high blood pressure and now edema??

Hi @wendy517. If you haven’t already, I think first thing this morning you should get in contact with your doctor’s office. I’m not sure if this is a reaction to your BP medication but you really should have these new symptoms checked out. Especially considering you now have edema and all over pain.

Did this come on suddenly?

Hi Lori, started couple days ago but didn't pay attention until I weighed myself and no way I gained 5 lbs in 2 days, my sneakers were tight when I put them on for a walk and then realized my ankles were swollen and felt tight in my own skin, never had edema before, not even through 3 pregnancies.

The crazy itching started yesterday and know it's a PV side affect but my numbers were at very good levels last they checked and when they were bad the itching was relatively mild. I'm a lotion head to toe pretty much every day so that helps a lot.

The BP meds were started 9 days ago so definitely need a different med to try and see what happens.

I texted my Doc and called the office to make sure he saw it and calls me to discuss.

I'm assuming the BP may be a gift from PV, over the past few years it would spike sporadically and we shrugged it off to stress. I have a feeling it was from the PV sludge blood.

I'm going to ask my Doc if it makes sense to take 2 low dose aspirin a day or maybe 2 every other day? I'd rather not go on blood thinners if that's what's needed in addition to BP meds.

Maybe I should also get a CBC done to make sure my hemoglobin & hemocrit didn't jump back up again. Last was mid June and good at 12.9.

Many pieces to the puzzle and isn't always clear where they fit! My Dad has high BP and heart disease so it could also just be I was pre determined to get it based on heredity?

I'll keep you posted!

You're the best Lori ❤️

Oh gosh, Wendy. These blood ‘things’… PV can increase the risk of developing hypertension for the reason you’re thinking…the increased number of red blood cells can make the blood thicker and more difficult to pump through the arteries, which can lead to an increase in blood pressure.

Because your symptoms have changed since June it wouldn’t hurt to get another CBC and maybe check kidney function, ie; the BUN, creatinine and GFR.
If you’re taking Amlodipine, that’s one of the BP meds which can cause edema.
Hopefully you get a callback from your doctor soon. I know you’re anxious…. Keep your legs elevated when you’re resting. ☺️

Do you take a low dose aspirin now?

Hi Wendy, how are you feeling today? Still experiencing the edema? Were you able to be seen by your doctor?

Hi Lori, I've been a forum slacker, thanks for reaching back out to check on me.
Saw my GP who drew blood. HGB went up 2 points to 14.5. I believe by my next CBC check at the Hema doc (mid Sept) I may need (and want) to get a phlebotomy and I've now got a standing order for saline infusion to see if that helps the days after.
Do you have any insight on finding the HGB number that is your sweetspot? Everybody's body is different and the range is fairly big, I was thinking after time I'm hoping to be in tune with how I feel at various levels and perhaps my sweet spot is on the lower end, middle or higher norm.
Hard to know now with the BP issue, which by the way looks like the new med is doing its job, will continue to track and I'm scheduled for stress test at the cardiologist in 6 weeks. He wanted the meds to be fully kicked in.
He agrees its hard to know if the BP is hereditary, PV related or something else is going on (hopefully not the case!) although my Dad's BP issue was systolic and mine is diastolic and didn't ask that when I was there, thought of it later.

One thing that did show up was low BUN/Creatinine Ratio (10) I hadn't looked at my results in the portal before he called to tell me all looks good right now. He's very good at picking things up and it's a yellow flag, not red on the report. He should have said something because with my SIBO episode and feeling so fatigued, I don't have much of an appetite and looks like that indicates I need more protein intake. Started back up with a protein shake yesterday & I need to get the Aminos I've taken in the past which is protein that goes right to the muscle. It's given to stomach cancer patients who've had their stomach removed, I get it through my health coach. It will help me to work on building up my muscle mass with all this "resting" 👀 🙄 I've never been this sedentary in my whole life.

Love your feedback, if you can give any insights on PV'ers finding their "sweetspot HGB number ", I'd love that. Certainly understand if you have never seen anything on that or heard via this forum.

I do take a low dose aspirin, never answered that previously.

One more thing, do you have any articles on what I'd learn through a bone marrow biopsy? Being Jak2 neg which is only 5% of us with PV, I was wondering if the biopsy would provide more insight. I can ask my PA at the Onc office in Sept, she's been awesome, educating me on reading blood results. I'm going to keep a close eye to keep track of trends etc.

Thank you again and happy Funday Sunday!

Good morning, Wendy! I’m sitting here in front of the fireplace this morning snuggled in a blanket. It was 36 degrees when I got up! It’s Aug 27 in the northwoods of Wisconsin. 🥶LOL.

I haven’t found any direct conversations in the forum with members having found that sweet spot for their HCT and HGB numbers but I’m going to tag a few of our PV friends in hopes they’ll jump with some comments for you. @cindy316 @inevanmac @jerrlin @jjdownes01 @albertedward @chella65 @sanjayd @casevin7 @dale1k

That’s great news about your BP responding to the new med. One hurdle out of the way!
I can commiserate with you for feeling like you’e been turned into a slug! That was so difficult for me to adapt to when I had leukemia and treatments. I’m hoping when you find a good balance in blood numbers your life will get back on track.

You’re curious about what a bone marrow biopsy and exam (bmbx) might show. It goes right to the core of the blood manufacturing site in the body. The highly detailed analysis provides your doctor a picture of the health of your bone marrow and its ability to produce healthy blood products. It’s a valuable tool for helping to diagnose and assess blood conditions such as myeloproliferative disorders. There are also other mutations such as CALR, and different exon mutations not as obvious which can be factors in PV. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5210252/#:~:text=In%20the%20absence%20of%20mutations%2C%20two%20of%20the,bone%20marrow%20biopsy%20investigation%20for%20the%20second%20one%29.

I can’t remember if we discussed this in the past, about having a blood test for EPO? It’s a test to see the level of serum erythropoietin in the blood. If it’s too low it can send signals from kidneys to produce more red blood cells so make up for an oxygen deficiency in body. Here’s a good article which helps explain the connection.
https://my.clevelandclinic.org/health/articles/14573-erythropoietin
~ One more article for good measure:
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/diagnosis-treatment/drc-20355855
I love that you’re so proactive and positive. Makes a huge difference in overcoming these unexpected challenges. ☺️ Have a lovely day!

I have PCV with Jak 2 . I take 2 baby aspirin a day and phlebotomy when my hemocrit reaches 44. So far I have only needed phlebotomy’s every 3 to 4 months. Itching is my biggest side effect, and treat that with antihistamines. Hope I stay with this treatment until they find a cure.

Hello, I haven't posted, I've been going through a number of tests. Sleep apnea I understand can be a cause as well as the heart. I had 2 heart tests this week and a at home sleep test. I've also had one philbotomy. I now will complete appts set up first 2 weeks of September to find out results for my rbc and ht elevations. My last labs about a month ago they were still out but I'm set up for more the 1st week of Sept. This will be the first labs after philbotomy. I have not had a bone marrow biopsy yet but I expect it if these things don't indicate a condition. I felt better after the philbotomy but it lasted about a week.
I will post with results and hopefully better news.

Diagnosed with PV ( JAK positive).. in April 2021… After 4 phlebotomies, have been on baby aspirin and HU since.. My oncologist’s main concern is HCT level which she wants under 40 in my case.. That has been the case since early 2022.. HGB has been in the normal range on my monthly blood tests.. I have been taking a pretty heavy dose of HU… 8500 mg per week… So far my side effects have been a slight thinning of my hair and pain in my big toe on my left foot only.. Rarely feel any fatigue and exercise( bike ride) daily… I always hold my breath for the test results (next one September 1st).. So far I’ve been lucky.. Hoping I can cut down on the HU as eventually I think this may take its toll..
Good luck and best to you..