PV JAK2 and evolution of treatment over time

Didn't your doctor advise daily low dose aspirin? That's the usual....

Hi @bracha, You’re concerned about not taking any medication right now for your PV except for the monthly phlebotomies and wondering if this is the right track to continue. Quite honestly, this is a discussion you should be having with your hematologist. Each person’s health and diagnosis is unique to them. Doctor’s will suggest treatment options depending on the needs of their patient…it’s not a ‘one size fits all’.

While taking low-dose aspirin is occasionally prescribed for patients with PV, from my understanding, if the platelet levels are low then it may not be warranted because the risk of clots forming is reduced. I had a similar situation where my hematocrit and hemoglobin were elevated but my platelet level lower. My doctor felt my risk for developing aspirin related side effects outweighed the benefit for what was a minimal clotting risk situation at that time.
Have you discussed long term options with your hematologist? Do you trust your doctor? Or would it be advisable to consider a 2nd opinion?

@maine Some of us can't take aspirin, particularly those with or with the possibility of kidney damage (also a risk with some blood cancers). Blood thinners can be problematic with low RBC counts because one can bleed out more easily.

@maine Yes, have been taking 80mg of aspirin from the start of my diagnosis. I bruise constantly, but figure it is a small price to pay to keep from having a stroke.

Yes, have been taking 80mg of aspirin from the start of my diagnosis. I bruise constantly, but figure it is a small price to pay to keep from having a stroke.

@loribmt I trust my providers, local and at UCHealth (a four-hour drive). Just wonder if there is any study of PV being affected by age, environment and patient's overall health. There's a question mark in my mind as to whether I'm doing all to circumvent a stroke or heart attack from this disorder.
Most likely my anxiety is normal for someone diagnosed with a rare disorder and anticipating the fourth quarter in life. Being 75+ has its own concerns beyond PV is suppose. . . .....

@bracha, it’s understandable to be concerned with a new diagnosis like PV. And with concern often comes that dreaded anxiety. However, I didn’t realize you’re taking a low dose aspirin. You’d mentioned that you weren’t on any medication for PV. Well, the aspirin is one of the first and easy meds that doctors can prescribe to help reduce the risk of blood clots. Often PV is managed that way for a significant time, especially if routine phlebotomies are successful.
I think you can allow yourself less anxiety now, knowing that you are on a med that reduces the risk of strokes. Keep up with physical activity. So if you’re an idle person, then try for at least a good 5 minute walk in the house (or outside) or doing calf raises for several minutes every hour. Pair those short bursts with some weight lifting, aerobic exercise or brisk longer walks and you’ve reduced your risk. And, of course, staying well hydrated.

Since you’re currently responding well to the phlebotomies and taking nothing other than low dose aspirin, your doctor is feeling comfortable with how this is being handled. Nothing will change abruptly. Most blood diseases are gradual, not overnight. So your doctor will monitor you with routine blood work, watching upward or downward trends and plan your meds accordingly. Maybe you won’t ever need more than aspirin and if you do, there are several effective meds.

In the meantime, I just mentioned this to another member this morning, several hematologists for members in the forum, including my own hematologist has anecdotally shared that, “The majority of people with a myeloproliferative disease such as PV or ET will pass away with the disease, not from it.” So if I may, I encourage you to move past this stage of ‘now what’ and just get on with life. Nothing has changed, you don’t feel differently, except to know you need to monitor your blood through labs and take an aspirin. Most 75+ year olds would love to be in those shoes!

Hah, yes, being 75 + has its own concerns…I just turned 72 last week. I hear you! 😅 I recently hurt my thumb doing something really stupid and now I worry I’ll starve if I can’t open jars. LOL. (Nah, I’m just joking) but it is putting a cramp in my style for sure!

@bracha At UCIrvine, much research going on regarding JAK2/polycytemia vera at the Fleischmann Lab.

@loribmt Your response has been exceedingly helpful. Coming up on a year since my diagnosis with no symptoms other than blood draw that showed the high red blood cell count, I am indeed very fortunate. I normally stay hydrated and exercise regularly. Live at 6800 feet which supposedly is not great for this diagnosis, but the view from my home on 60 acres is medicine in and of itself.
My genetics say I should be here for a spell--mom died at 96 of old age and dad died at 90 of heart attack taking only high blood pressure med. As I mentioned previously, stroke is my greatest concern because if I do last, I don't want to be debilitated. Actually, I consider myself fortunate. Just another bump in the road but by no means a roadblock. Thank you for your support and this Mayo Connect connection. Best wishes for your own journey.

@maine I'll pursue this lab for further information. Thank you.