ET Jak2 and high blood pressure

[DH65]

Hi everyone,

Is high bp common for those of us with platelet disorders? I’ve been on 40 mg Lisinopril but now it’s not working and doc has added Propanol 60 mg ER . He said this is common with ET and kidney function tests might be necessary as ET affects kidneys.

Has anyone had experience with this? I’ve feeling discouraged with yet another med.

[Swede]

Hi there,

yes, I have the liver and kindey tests done every visit to the doc.I was told that high bloodtressure is common and as I all my life hade really low blood pressure, I can say that it is higher now.Not over the top but still higher, so if you are having a normal plood pressure before E.T I guess it will shoot up. But...we are all different.

[DH65 in reply to Swede]

Yes mine was also low

[JackLina]

i cannot take anything to lower it though. I have such intolerance the longest I managed was 3weeks before it became unbearable and I stopped. Any idea? My diet couldn't be better, my exercise is spot on but I'm going in a bout half an hour to register with another gym so I can get stuck in to my yoga and swimming again. Hopefully, I will see some improvement with those. On the other hand, I have been advised not to do too much in fear of it raising. What can I do other than this? any ideas?

[DH65 in reply to JackLina]

I started Lisinopril 2.5 mg and like it right away as it made me relax and sleep but I’ve gradually had to take more and now it seems 40 mg is not even enough.

Reducing stress, meditation, walking all help and way less salt!

I’ve also heard to increase water intake to help filter HU drug

[JackLina in reply to DH65]

Thanks. I walk plenty every day and drink plenty of water. My diet seems to have gone down the Swanny at present, which is so out of character but I can see that I need to do better. I'm a piscetarian and addicted to vegetables but since this diagnosis I seem to have been thinking too much about my diet but leaning towards bread and biscuits. This is out of character because I have never been a lover of either. I'll take a look at Lisiniprol.

[Mpn1967 in reply to JackLina]

My blood pressure is better with intermitted fasting

[JackLina in reply to Mpn1967]

I will give that a go although I have beenn told that the space I leave between my last food in the day to my first on the next day can amount to fasting. It's generally 12 hours +

[ALynnJohnston]

I also have high blood pressure!

I’m not sure if they’re related.

The kidney test you mentioned ive recently been called by GP to go get my bloods counted, one of the tests ‘was’ for kidney/liver function! At first I thought That’s strange? Now your saying it it makes sense! The results came back saying my platelets were up yet again and the white cell count were very low. - 🧐 I think my blood is unbalanced 🤪 honestly some days you just have to smile and try get through another day

[DH65 in reply to ALynnJohnston]

Last time my platelets were up and bp up so probably related. I know stress raises both of them. I see heme June 1 so will know more. Apparently there are some other kidney tests like ultrasound or nuclear we could do.

[OxonAndy]

I have high blood pressure which I had before my diagnosis of PV. I was already on medication for this. The medication keeps it under control and I do regular exercise and maintain a healthy diet most of the time which helps

[GuyMorgan01]

Hi People

Ultra sound is normal for kidney and spleen investigation. My Hemo checks the spleen manually every 6 months and will no doubt re ultra sound if there is any significant change. I have felt pretty good all along and only take an asprin. I have gone on the Keto diet. This goes against everything we have been told for the last 40 years. I have felt an improvement in my energy levels and general well being and shedding a bit of excess weight as well. Its early days but it's working for me and might be worth a try for others. There is a Doco on Netflix called "The Magic Pill" which is about the Keto diet and how it devoloped. Some of the benefits are surprising and not what you expect from a high (natural fat) diet. Worth a look, nothing lost.

Kindest regards to you all

Guy☺

[Garstongal]

This would indeed explain a lot! I originally went to my doctor because my blood pressure was very erratic and much too high at times (I monitor bp at home). I have been on bp medication for over 30 years with no problems until about a year ago. My GP added a third tablet to my prescription but it still hasn’t returned to my earlier readings. During the investigations carried out by my GP, It transpired that my platelets were high and after referral to haematologist I have been given a diagnosis of ET with CalR...so maybe there IS a link?

[Wentry]

I have had high blood pressure for over 20 years (I'm 55 now), it was fairly well controlled but about 3 years ago became impossible to control. I was diagnosed with ET last October but my platelets have been high for around 5 years, consistently for over 3 which seems to coincide with my blood pressure problems and I have to say I had wondered about whether there was a link. I was having 6 monthly blood tests and regular kidney checks due for my blood pressure, but my doctor didn't mention the significance of high platelets over the years and only referred me to a haematologist when they went over 700 last August.

I've been on most types of BP medications over the years but many of them didn't work for me as they made me too tired, slowed my heart down too much or caused ankle swelling at the doses I needed. I was already on Inhibace Plus (Cilazipril and Hydrochlorthiazide) at the maximum dose I am allowed, and Felodipine, and tried various other things with them but nothing was working. I finally went on to Spironolactone about a year ago and it seems to be working, but I think it is usually kept as a last resort type of thing due to possible side effects.

[Wyebird]

Interestingly I’ve noticec my blood pressure creeping up. It’s still well within normal range as before ET I was told I had blood pressure of an athlete.

[Mpn1967]

No it’s not common. My hematologist only told me my bp has to be under 130 because of the ET.