PV and hypertension

[Skyehope]

Hello lovely forum members.

I hope you are all as well as can be and are staying safe in all the crazy weather currently blowing around the world!

With my blood pressure increasing and meds on the horizon, I’m trying to research the subject of the best blood pressure medications for those with polycythaemia vera.

I’m not looking for medical advice on my specific situation – rather I’m looking for real life experiences or published research papers on the subject if anyone is aware of any please? I like to read up on these things so I have knowledge before being presented with options by the GP so that I have an idea of what’s going on and can discuss those options sensibly.

I saw a presentation by Prof Barbui at an MPN Forum a few years ago where he recommends ACE inhibitors for those with PV and hypertension but I’ve not found any papers or research comparing the different types of BP meds for those with both hypertension and an MPN (you’d think it wasn’t a common condition 😂).

Apparently the GP would start me on an ARB rather than an ACE inhibitor but I'm not sure why and will need to find out...

In other news, I was here before Christmas talking about how my interferon journey was going (no visible movement in counts after many months) and my consultant asked me to take iron tablets as my MCV was getting too low and I had a few symptoms of low iron.

After much thought I did take some, but less often than requested and I didn’t finish the course because I was very wary of Hgb and Hct. I must only have had about 10 tablets within a 30 day period, the last being about 3 weeks before the 30th Jan when my Hct and Hgb were the highest they’ve been in years at 0.466 and 145. At the start of Dec, before the iron, they were 0.42 and 138 but that 138 was higher than normal for me too so perhaps the rises weren’t totally iron related – only time will tell but I was disappointed. I hope the iron was the cause and I hope that it settles back down quickly.

On the flip side though, my platelets also showed a number I hadn’t seen in years, but in a positive way. Only time will tell if that’s a result of the interferon or the higher iron. Testing again in a couple of weeks and venesection will be calling if my Hct doesn't drop before then. I've avoided venesections since May 2019 and it would be a shame to break the streak!

So, lots of interesting things to look forward to in the next few weeks - never a dull moment! 😄

Wishing you all well x

[Lena70]

I have developed hypertension. I take 5mg Lisinopril, an ACE inhibitor. It works well.

It’s so weird to me that I find myself here as most of my life my blood pressure teetered on being low.

[Skyehope in reply to Lena70]

Thank you 😊

[hunter5582]

I did not tolerate the ACE inhibitor lisinopril. I did much better with an ARB, losartan. Note that My BP also stays near normal now that the erythrocytosis is well controlled.

[Skyehope in reply to hunter5582]

Thank you 😊

[Skyehope in reply to hunter5582]

Hunter, do you happen to know if there are any benefits of ACEI over ARBs (or vice versa) for people with MPNs? Thanks 😊

[hunter5582 in reply to Skyehope]

The side effect profiles of the two classes of hypertension medications is different. Both can help to reduce blood pressure. ARBs have a potential secondary benefit for male patients that is similar to Cialis/Viagra. Since ED can occur in males with MPNs, this could be a consideration. This would be something to discuss with the care team for case specific advice.

[Skyehope in reply to hunter5582]

Thanks. I'm getting a little list of questions together and this is very helpful. As a female age 45, I'm interested in why they made that choices look forward to finding out.

[william-Indo]

I am just yaking Magnesium to control my BP and constipation.It work very well

Cheers

[Skyehope in reply to william-Indo]

Thank you 😊

[jillydabrat]

I have been on Lisiniprol for years with no problems

[Skyehope in reply to jillydabrat]

Thanks Jill 😊

[AirconBob]

Also on 5mg Lisinopril for a number of years with no problems. Once I was advised to take ferrous sulphate for low ferratin - lasted almost a week before HCT shot up to 52. took ages to recover to 'normal' - never again.

[Skyehope in reply to AirconBob]

Thank you for mentioning it took ages for your Hct to recover. I had imagined that with a couple of weeks inbetween stopping the tablets and getting blood tested that maybe the iron wasn't responsible so I'm glad there's a chance it still is 😊

[Tipsy2023]

Morning my BP has been well controlled by felodopine but only since my platelets have returned to a normal level . I find this interesting though most of my doctors don’t appear to . L

[Skyehope in reply to Tipsy2023]

That is interesting. Thanks for your reply 😊

[Meatloaf9]

Hi, I take lisinopril 20mg per day and amlodepine 5 mg per day half in am and half in pm.

My GP tried to switch me to losartan due to risk of gout in PV patients but my kidney function (egfr) dropped from the 80's to 43 after a month. I went back to lisinopril and the egfr is back in the 80's after drinking all the water I could tolerate. Just my experience.

Best to you.

[Skyehope in reply to Meatloaf9]

Thanks for your reply. Glad your egfr is back up 😊

[johoho]

Hi Sky, my situation sounds very similar to yours. I seemed to develop hypertension at the same time as PV diagnosis in 2015. I've been on Ramipril and Imdapamide since. All well under control until I started Inteferon in November. Those testing my blood commented on how tiny my veins had become, and I noticed my chest was sore and I was getting breathless. Sure enough my blood pressure had leaped up again. The Dr gave me Amlodipine on top of the other 2 meds, took a few weeks to work but BP has improved. One of the reasons I wanted to try Inteferon was because I was in an eternal cycle of high hct (triggered by iron treatment) followed by crippling anaemia, which required iron treatment! The anaemia has always been my biggest problem. However, I held off iron treatment until the BP was under control. I'm not taking Ferrus Sulphate every other day. I get my test results on Thursday. 🤞the Inteferon has helped control numbers while allowing me to improve anaemia situation. I think I'll be starting Statins soon. Jo

[johoho in reply to johoho]

Just to add, I take magnesium to help with jumpy legs, it's fantastic stuff, but it hasn't helped my BP.

[Skyehope in reply to johoho]

Thanks for replying. My bp has been a bit on the upper side for a while but this last few months is worse and sometimes I have trouble keeping my diastolic out of triple figures. I do wonder if the interferon is playing a part in that but I'd rather keep on it and take bp meds alongside it. I was recommended to start statins round the time I started interferon but have to wait until i get settled on a steady dose of interferon as both can affect the liver and it'll be impossible to know which one is responsible at the moment with constantly increasing my interferon doses.

I've heard a few people take magnesium and I must look into it more. Thanks 😊

[johoho in reply to Skyehope]

Exactly my experience! Getting used to one med at a time is important if you stand any chance of understanding what symptom comes from what med. Not sure this helps but my Haematologist said it was categorically the Inteferon causing the BP. And the GP said, yes it was a very common occurrence. I feel much better now, and once I've got on top of the anaemia, I'll move onto Statins. I'd love to hear how you get on, take care. Jo

[Skyehope in reply to johoho]

High cholesterol and high BP run in my family and my Mum was on meds for bp when she was 10 years younger than I am now so I've held off quite well 😂. As my haem said the other day, we must control the controllable and as much as I'd rather not be taking medications (never mind this many!) it hopefully helps with risk factors.

Take care and do keep updating with progress 😊

[johoho]

Snap. Same with my mum. Take care.