Blood pressure

[Joetcalr]

I saw a poster at the GPs about blood pressure, basically it said keep your blood pressure down and you won’t have a stroke or blood clots.

I’m wondering if I can keep my low blood pressure, in spite of my platelets being somewhat raised, would that mean I wouldn’t have a stroke?

I’ve not known the consultant ever be bothered about blood pressure, so I’m a bit confused about this.

Thanks Jo

[hunter5582]

Maintaining good cardiovascular health is essential for anyone with a MPN. This includes keeping blood pressure in the proper range. It does reduce risk of negative outcomes like stroke and heart attack.

Thrombocytosis does not raise your blood pressure in the same way that erythrocytosis does. Platelets comprise less than 1% of your total blood volume. RBCs are closer to 50% of blood volume. That is why erythrocytosis can cause hyperviscosity and raise blood pressure.

The issue with the platelets is about how they behave. People with ET are at increased risk for thrombosis. High blood pressure increase thrombosis risk too. The combination of ET and hypertension definitely needs to be addressed when present.

My hematologists always take my blood pressure every time I see them. Monitoring for hypertension is standard medical practice for people with MPNs. I also have my own sphygmometer and monitor it myself periodically. Note that I have a past history of stage 1 hypertension that was reduced when we lowered the erythrocytosis. I still take a 1/2 dose of losartan as prophylaxis because of my history.

So the short answer is that your care team should definitely be monitoring your blood pressure.

[KentBee in reply to hunter5582]

Hi, I am high risk JAK2POSITIVE ET and my Haemotologist has never taken my BP. Indeed I haven’t seen her for over 3 years and just have blood tests followed by a phone call. I take tablets from GP for high BP but have to take my own BP . I don’t feel well supported by the medics.

[hunter5582 in reply to KentBee]

Good for you for self-monitoring your BP. Sorry to hear about the concern about the level of care you are receiving from your current care team. Perhaps it is time for a change. That is your prerogative.

[Joetcalr in reply to hunter5582]

Thanks for explaining that Hunter, I have ET, I hadn’t realised that it was more of an issue for people with PV. But it seems very strange that the consultant requests that the GP takes the blood pressure just once a year, and the nurse doesn’t take it at the hospital while people are waiting around to be seen. I follow a Mediterranean diet and take Hawthorn which is meant to be good for the arteries. When the consultant asks that I take a higher dose of hydroxy, I’ll ask him about blood pressure.

[MCW22]

I had low blood pressure most of my adult life, didn't stop me from having a stroke at the age of 59, long before I was diagnosed with PV. Before face to face appointments stopped my blood pressure was never taken when seeing the consultants. However I do keep a check on it myself at home.

Carol

[Mostew]

Where do you live? If UK you could ask at your Dr. To have blood pressure taken , or I think Chemist's now do it ? Before lockdown they used to take mine every hospital visit. Now just have phone appointment

[Joetcalr in reply to Mostew]

yes they did it at my local pharmacy most recently, but I think I’m going to buy a monitor, I don’t want to become a hypochondriac though, I could take it once a month, offer the service to my friends!

[Mostew in reply to Joetcalr]

You could make a profit !!!!

[Joetcalr in reply to Mostew]

🤣🤣

[RazB]

Your friends will love you! I have ET, am in UK and hadn’t seen a consultant for 3 years or had blood pressure taken for a long time. Fairly recently I went to have a bloodtest and asked the nurse to take bp as had been feeling a bit strange for a few weeks. BP was sky high! Was told by GP that I needed medicine for it but am trying to manage it myself, exercise, good food, sleep etc and I have a monitor at home, it’s helpful. Take it 3 times each time you do it, it changes with each reading and always comes down. I always record the middle number. If bp doesn’t stay down I will agree to medicine but atm am battling grim side effects of starting Peg so don’t want any interference with that til it settles! Nurse/GP in UK always happy to take BP, don’t be afraid to ask. X

[Joetcalr in reply to RazB]

Thanks for your advice, do you know what sent your blood pressure shooting up?

[RazB in reply to Joetcalr]

i don’t think it’s MPN related at all. I’ve just spent a year completely gutting and renovating our very old house and living in it! It’s been very full-on and although its great learning new skills (I can now work very competently on a building site if I need to!) it’s been hard work emotionally.

[saltmarsh]

I had open heart surgery 4.5 years ago to replace the aortic valve. Even though heart is otherwise healthy I check my bp once every day. It remains in a normal range after 3 years with pv. I believe in the benefits of a healthy lifestyle and exercise. As Hunter said, "maintaining good cardiovascular health is essential for anyone with a MPN".

[Joetcalr in reply to saltmarsh]

Thanks, when I was younger I had very low blood pressure and was forever fainting, I wonder why it gets higher as you get older, maybe cos a bit fatter and a bit less fit 🙁

[Meatloaf9]

Maintaining a healthy BP is important for everyone, not just MPN patients. I believe that strokes and heart attacks are two of the leading causes of death in MPN patients, at least that is what I have been told. Happy monitoring! Best to you.

[Joetcalr in reply to Meatloaf9]

Thanks, and all the best to you too.

[UKZA]

I believe that in order to be in control of our illness, we need to be on top of our health indicators. I have always monitored my own BP as it tends to be on the low side, especially when I am feeling run down. I have learnt that this is up to us and info can be fed back to consults if needed. Often the watch and wait scenario is improved through your own monitoring. This led to me having a BMB and diagnosis post ET MF . Wouldn’t have happened if I hadn’t asked questions and monitored health. In spite of our illness we can be positive and in control of our life and lifestyle. That is my theory at least. Take care . Penny

[Joetcalr]

thanks Penny