ET and Blood Pressure

[JollyGood25]

I have read that interferon can cause heart damage, I have not had heart fluttering or high blood pressure until recently, not sure if an interferon side effect. Anybody else had this problem ? Interferon otherwise is brilliant for me in keeping platelets controlled. Haematology again have said BP, heart issues, are for my GP to deal with. My question now. I have been started on amlomidopine, 4 weeks almost, BP still high, dialostic always 90's Do you have high BP with ET, what medication is safest and effective ? Natural remedies ? Any help, advice appreciated, in a mission to sort myself, what do I ask for at GP next week

[hunter5582]

The interferons can cause heart issues and hypertension; however, these issues can co-occur as well. It can be tricky to figure out. Sometimes timing is the best clue. If the issues you are experiencing are an interferon adverse effect, then it is the province of the hematology team to address. If they are unrelated to the interferon, then the hematology team still needs to be involved even if the GP is treating. Cardiovascular issues are a significant risk factor when someone has ET.

When my BP was elevated, I found losartan to be the most effective and easiest medication to tolerate. Losartan is an angiotensin receptor blocker. I did not find lisinopril (ACE inhibitor) or atenolol (beta blocker) to be tolerable. I also have used diltiazem, which is a calcium channel blocker like amlodipine. Diltiazem was actually for tachycardia and had the side effect of worsening the constipation that hydroxyurea caused.

There are some things that are "natural" that can be helpful. Suggest consulting with and Integrative or Functional medicine doctor about these interventions. There are also lifestyle choices that can help, specifically diet, weight control and exercise. The DASH diet can be helpful.

Wishing you success moving forward.

[JollyGood25 in reply to hunter5582]

Thanks Hunter

[Pachena]

I had mild heart attack like symptoms when I began on Pegasys. I would get lots of pressure in my chest (sometime La knife like pain) building up to my neck and jaw and radiating down my left arm to my wrist when I exerted myself.

I was put in the care of a cardiologist and had multiple tests done. It was a relief to find my heart health is very good, zero calcium score and very clean.

I did suspect it may be a side effect from the Pegasys. I am on only a small does 45mcg. I began with weekly injections, then 10 days, 2 weeks and now 3 weeks.

After being 3 weekly for awhile the attack like symptoms are hardly felt.

The cardiologist made contact with a heamatologist who said that it is unlikely to be the Pegasys but that the ET effects the heart.

So I feel well looked after. I have tablets and a spray to use if I feel I need them.

My heamatologist said I am quite sensitive to the Pegasys and am getting excellent results from such a small amount with minimal side effects.

I am so happy it’s working so well as I couldn’t tolerate being on Hydrea 😃

With the blood pressure, mine went up briefly which was a puzzle as it’s always been low. However once I reduced the salt in my diet, it normalised. We were having quite a bit of soy sauce while away so possibly that was the reason.

I wish you the best with finding answers.

[JollyGood25 in reply to Pachena]

Thanks Pachena Talking to someone helps the anxiety Great site this Stay Well Best Wishes

[Pachena in reply to JollyGood25]

My GP asked me to take my BP many times through the day for 10 days to track it. It turned out my BP was more low than anything. He said stress and white coat syndrome can make it rise

[Catbells66]

Hi , I had never suffered from high blood pressure until recently, I've been diagnosed with ET since 2017 and started Hydroxy in 2021 . I did wonder if it was connected to the ET or maybe it's just my age or genetics ( mum, sister have high BP too) . My GP prescribed Amlodipine which I've been taking for the last 6 mths, and so far it's stable. As for natural remedies, I try and watch my diet ( not too much salt etc) and try and walk most days.

Hope you get yours sorted. Best wishes.

[JollyGood25 in reply to Catbells66]

Thanks Catbells The amlodipine not touching mine. Have to admit bit anxious at mo, googling lol This site with people like you to talk to helps Dont seem to get anywhere with the professionals these days. Best Wishes Stay Well Catbells Thankyou

[Catbells66]

Oh gosh, I'm sorry to hear that. I must admit I was also anxious ( it came as a shock as I'd always had good BP) and being anxious doesn't help it , just looking at my BP reader in its box made mine go up !! Yes, this is a great forum for help and support.Take care.

[RoundTheWorld]

My BP went up a few years pre PV diagnosis with similar profile to you (ie diastolic more stubbornly raised than systolic and fluctuating around 90 I think). indapamide and doxazosin eventually got it down to a better baseline. More recently with PV treatment it has lowered further (this time the systolic reduction is more marked than diastolic, but both are lower) - I suspect due to venesections rather than interferon, based on timing, but I could be wrong. (Only problem is I’m v tired and get a bit light-headed so maybe that’s gone a bit over target for now - time will tell).

[JollyGood25]

I am wondering if progressing to PV but how would I know could I see that in bloodwork

[RedCardRob]

It was because I had high blood pressure the my GP was curious as to why a blood test showed high platelets. He put me on felodopine for the BP and aspirin. Up until then i had flutters, dizzy spells and eye focus problems. Thes meds more or less stopped these occuring but still had the night "warm ups" and sudden cramp like pain (but not cramp) in my limbs. GP referred me to haematology and ET was confirmed. Since been on peg and these symptoms have now ceased. The side effects being fatigued and mild bouts of depression.So I think you could discuss with your GP to consider some meds for your own med history.

All the best.

[Looolooo]

Yes. Mine fluctuates mainly depending on whether I have been properly exercising or not. But white coat syndrome is real. I'm always about 150/100 at docs but then when they tell me to take a 7 day average at home, it's always around 117/82.! I tried beetroot juice the other day. Thst was so amazing it was scary. Within 3 hours bp down to 113/75! Also on amalopdine.

[KLCTJC]

I am like some others. I have crazy white coat syndrome. I can just look at an automatic cuff and mine goes up. But I have a manual cuff at home and have my husband check it and it is like 110/70, but at docs office it is bananas and HR like 115! At home HR is in the 50’s. But I have heard beets are great for it. Considered taking the a beet supplement if it was appropriate. Thinking it might help ease my mind!🤣

[Skyehope]

Hiya. I have PV rather than ET and have developed high bp since starting interferon. The GP tried me on ramipril but even at a fairly high dose it made literally no difference and my diastolic in particular is a worry. It's been months and months but still no solution for me and they don't seem to be in a hurry to resolve it. The haematology team says it's a GP issue and not their concern. Hope you find a solution and please share when you do 😊

[JollyGood25 in reply to Skyehope]

Have to say interferon has been great with platelets so far, but ET treatment I believe has caused so many other things Liver enzymes, kidney issues, and seen kidney stenosis causes High BP We cant win, meds help, but side effects get us And like you Haematology say its a GP issue How, when its ET and meds and Docs not experienced with blood cancers. Why dont they work with the GP to help patients for best care ? My GP's seem unsure on what to do with MPN issues. Would be good if we could all have immediate access to MPN specialists, I believe many of us are not receiving the correct treatment as individuals, which is scarey But heyho onwards and upwards Best Wishes We can all do this

[DELLAZ]

Hi-Sometimes when Iron gets low it can cause heart fluttering or abnormal heart rhythms- You can ask your Dr to check your iron level-and ask for referral to cardiologist- I read There is a new specialty out now called oncology-cardiology or cardiology-oncology- but they might be hard to find- Probably only in big cities