Very High blood pressure

[Freshairfiend]

I had a heartbeat issue last week ( felt a heavy thumping and slight difficulty getting my breath). Saw gp. She said heart sounded fine but has booked me in for bloods and ecg. However my blood pressure was high , so I’m now monitoring t home. I started yesterday evening. All my readings have been so high, they’re on the hypertension level 2 range or higher !!

I went into the surgery to take it there and it was still as high. So I got to see a nurse who took it twice on her machine. One was high and one was normal. She reassured me I was ok and she’d only be worried if it was 200 and something. She showed me how to take it with a relaxed arm on a pillow, and relaxing through deep breaths etc. and to keep monitoring it.

I’m still worried as I’ve never had high blood pressure in my life, it’s always been normal. Looking at the potential causes, the only one that fits is being over 65!

Has anyone else had very high blood pressure from steroids or possibly stress of having PMR? I’m currently tapering from 15 to 14 mg over 4-5 weeks. On my third week now and have noticed stairs are feeling more difficult and I get upper body aches and pains for a lot of the day, especially if I’ve been doing something using my arms for more than about half an hour. Paracetamol has helped.

I’m going to look at my drug interactions again, as I’m on a lot of vitamins etc as well as steroids, accrete d3 and so on, to see if there are an6 blood pressure issues there.

I’m not all keen on taking even more medication. Any thoughts, advice, similar experiences with high blood pressure?

[Miserere]

I had high readings, especially in the surgery but I soon learnt that I suffer from white coat syndrome. However, the first time I take my BP at home I anticipate that it will be high and, guess what, it usually is. Then I start to worry that it is a higher reading and so the next reading is also high. Now I realise that the problem is that I am getting BP monitor syndrome, so I tighten up just looking at the monitor before using it. It can be a vicious circle.

I am not saying this is the same with you but I'm aware that I can be my own worst enemy when it comes to BP readings. Good luck with the ECG and blood tests - at least they are doing the right things to find out if there are any problems and then they can be dealt with. Take care.

[Mrsd12f in reply to Miserere]

I have exactly the same problem! At home, I find it helpful to listen to a short yoga track before I take a reading.

[calibriel in reply to Miserere]

I’m the same, but it all got a bit more extreme when I was in hospital recently recovering from joint surgery. My BP, which had (unsurprisingly) been high before the op, dropped dramatically during and after - which was expected too - but then started to climb again, over the next 36hrs or so, until it was higher than I had ever known it before. Everyone was alarmed, none more than me. It was a nurse who noticed that I was holding my breath every time the reading was taken … I’m not saying that’s the only reason my BP goes up when I’m worried about it, but I think I may have been doing that for a long time, and of course it will send the reading up. Something to be aware of

[Freshairfiend in reply to calibriel]

great advice thanks

[Miserere in reply to calibriel]

I had a knee replacement in December, so snap! The nurses took my BP all the time but I was too much of a coward to ask how it was; I didn't want to know as there would be little I could do about it and I didn't try to look at the readings. However, they kept saying it was OK. I do recognise the feeling of holding the breath, though. I've caught myself doing it occasionally - it's like forgetting to breathe - so strange.

[Freshairfiend in reply to Miserere]

thank you so much. I think I might have both syndromes. And yes I’m being monitored which is good.

[Miserere in reply to Freshairfiend]

I hope that is your only problem - I mention it just because I know it can happen.

[DorsetLady PMRGCAuk volunteer]

Pred can raise BP - in fact it’s a very common side effect….but yours does sound a bit more than some get. But they do also return to more normals levels as you reduce the Pred.

However stress about your illness and the raised markers won’t be helping, and hopefully the tests you are booked in for will give you the answers.

I appreciate you don’t want extra meds added in, but as we say about Pred, if you need them, you need them. But certainly do look at the supplements…

I’ve taken BP meds for a long time (family trait)and have to say never had an issue with side effects.

[Freshairfiend in reply to DorsetLady]

Thanks, I read the leaflet this morning. Along with hypertension, it says heart problems leading to shortness of breath. Thankfully I’m getting checked out.

[Alliekat65 in reply to DorsetLady]

they put me on blood pressure meds as I was scoring so high. I've always had normal tp low blood pressure but I think our lovely friends on here are right. it's medication +stress+a touch of anxiety. I now have my old dads blood pressure machine and I'm still in the 2 zone BUT they are not always as accurate as a manual BP.

[Bcol]

Agree with all DL has said. I've been on Amlodipine (5mg) for many years with no side effects. If you have a BP machine at home then it may be worth doing a BP check as part of your normal routine. The fact that it's something you do every day/couple of days/weekly and a normal routine check will help to stop the build up of worry about doing it.

[Freshairfiend in reply to Bcol]

Great. Many thanks and very reassuring.

[random901]

Hi Freshairfiend! In addition to relaxation plus supporting pillow, sit down for at least 5 mins with feet on floor, after not eating or drinking for 10 mins. Take 2 readings, with 3 mins or so in between, and record the second one. Remember to alternate the arms.

[Freshairfiend in reply to random901]

Will do. Many thanks

[Noni71]

Hi, the information in your post is exactly the same as my experience. I had to go to a hospital in Majorca and my BP was so high they gave me a Valium! So eventually I decide that I need to go on Amlodopine with encouragement from my GP and have no side effects at all except for a very slight swelling of the ankles in the evening. My husband and I take our blood pressure once a month and it’s always about 125/75. Obviously I still have white coat syndrome but now it’s only 160/95 instead of over 200! Glad I started taking the meds.

[Freshairfiend in reply to Noni71]

thanks, that’s reassuring

[PMRpro Ambassador]

Not impressed by your nurse - if it were 200 or so they might send you to the ED but she should be concerned LONG before 200 levels are reached.

You are most likely to get accurate readings at home, after sitting quietly for 5-10 minutes and not after rushing around. Make sure you aren't sitting with your legs crossed and your arm is relaxed - laying it on a cushion helps. Do it repeatedly through the day until it becomes second nature to shove the cuff on and check it and that will help the anxiety - and don't eat or drink just before doing it.

BP meds are not that bad - except the NHS has a fixation with amlodipine and its family and they can have the side effect of causing swollen ankles in some people! I was put on a low dose of two originally - more effective control and fewer side effects. I'm on pred which can raise BP but also on Actemra which is even worse at causing raised BP - no problems at all with my bisoprolol which is all I take now.

"I had a heartbeat issue last week ( felt a heavy thumping and slight difficulty getting my breath)"

How long did it last? Pred can also cause palpitations when the heart beats irregularly for a time. It needs checking out but don't be fobbed off if nothing appears on the ECG when they do it, that is a picture of a few minutes. If it happens a lot or for long or you feel breathless/unwell, call 999 in the hope someone arrives with an ECG machine while it is happening and then they will know. I could have a 24 hour ECG monitor and nothing show up and it was coincidence I happened to be in hospital when it happened so they knew what was causing it. My GP had told me to call 999 because he never heard anything but I never had - and I should have done. The problem would have been identified and sorted out sooner.

[PMRpro Ambassador in reply to PMRpro]

And a PS - Prof Sarah Mackie the Leeds PMR guru was worried about so many patients having a high BP when it was measured in clinic so she did all the staff as well to look for what happened to them. Her own BP was really high!!!! If SHE gets white coat syndrome ...

[Koalajane in reply to PMRpro]

It seems a lot of us get white coat syndrome!

[PMRpro Ambassador in reply to Koalajane]

Including the white coats!

[Koalajane in reply to PMRpro]

Yes indeed!

[Longtimer in reply to PMRpro]

Had mine taken 3 weeks ago, doctor shocked how high it was...190/85. Took 3 readings, so gave me prescription for BP tablets, the one mentioned Amlopodine, 3 days on felt dreadful, nothing unusual for me with meds!......in this last week it has been 175/85 then another day it can be 140/70...,not sure what's going on, but not taking the bp tablets......any reason why it can go up and down daily?....still on 5 mg pred.

[Freshairfiend in reply to Longtimer]

It might help o read all the replies here. Things will differ every day, but try to be consistent with how you take it seems to be the message. Also to try taking it lots of times a day so you get used to it and aren’t as anxious taking it.

[PMRpro Ambassador in reply to Longtimer]

It does very over the day anyway so you need to compare readings taken at similar times. And funny patterns can be informative.

mayoclinic.org/diseases-con...

[Longtimer in reply to PMRpro]

Thank y ou for that. One thing I do know is I won't be taking my BP today. OH went to city today, got phone call at about 4 pm from a paramedic, he had fallen banged his head, woke up with people around him and an ambulance, they took him in. Just now rang 4 hours later, he is still in the ambulance....nurse said doctor had looked at him, but have to prioritise people coming in so it's a waiting game. So sad the situation in our hospitals....

[PMRpro Ambassador in reply to Longtimer]

Oh heck! Hope he's OK. I always say that at least if you AREN'T first in the queue it IS good news ...

[Longtimer in reply to PMRpro]

Hope so, thank you.

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Oh dear sorry to hear that, do hope he’s okay and soon gets treated.

[Longtimer in reply to DorsetLady]

So do I he won’t come home a happy bunny! Will ring in another couple of hours. Thank you

[Freshairfiend in reply to Longtimer]

So sorry to hear this. Hope he’s home by now and you’re both ok.

[Longtimer in reply to Freshairfiend]

Thank you, yes he is home, feeling better than I am now! Hospital were excellent lots of tests, he came home with 10 sticky electrodes? on his chest. He didn’t ring me he got the bus home!

[PMRpro Ambassador in reply to Longtimer]

You sure they let him out?????

[Longtimer in reply to PMRpro]

Oh yes......I rang twice in the evening to check.....I know what he's like!.....They discharged him at about 9.30.....fac e messed up on one side, aching a bit.....very lucky......

[PMRpro Ambassador in reply to Longtimer]

Any opinions expressed?

[Longtimer in reply to PMRpro]

If there was he hasn't told me!......all results were ok.......I'm assuming.....said he tripped on a raised paving slab......liked the chat with the ambulance staff.....

[Freshairfiend in reply to Longtimer]

Glad he’s ok. Getting the bus, what a man!

[Longtimer in reply to Freshairfiend]

He’s a big walker and bus user, he thought there would be a taxi rank at the hospital 😂

[Freshairfiend in reply to PMRpro]

thanks for the helpful advice. the feeling of heart thumping and being short if breath happened two or three times last week or the week before. It didn’t last long, maybe a minute at most. I’m nit good at remembering or estimating time. It’s not happened since, but will pay more attention if it does.

[winfong]

I had high BP before being diagnosed with PMR/GCA. Pred hasn't helped any. 😄

Several things I've found that can really help - diet (especially no salt), exercise, and weight loss.

[Freshairfiend in reply to winfong]

Thanks. Yes salt is one I’ll look at and chocolate, because ofthe caffeine. I eat a lot of Lindt ninety percent as it’s so low in sugar.

[marionofnorwich]

I wasnt aware of having high blood pressure before PMR/Pred but def since, usually around 150/80 give or take a few points). I took Amlopodine for a few months at 5mg. Slight swollen ankles, no reduction of BP. Increased to 10mg daily - BP increased ( to around 170/85) and legs blew up like overinflated balloons - unbearable and not doing the job anyway so I stopped those and BP returned to previous (still high) levels. Roll on a year, I started 5mg of Ramipril. No noticeable side effects, no meaningful reduction in BP which ranges from 137 to 160 but usually around 148 so increased to 7.5mg a couple of weeks ago. Still same not very consistent but high top number. No breathless symptoms though or palpitations

[Freshairfiend]

what a rollercoaster. Thanks for the information . Hope things stabilise fir you.

[Missus835]

Yes, but only since being on Pred. Using the monitor at home caused me anxiety and BP was always very high. On two meds: Perindopril and Metoprolol (for rapid heart). Seems to be working as BP was 117/70 last week. It was always high on ER visits. I have Generalized Anxiety anyway, which doesn't help. I've also lost a lot of weight and reducing the Pred. Make sure you have a wee before you take your BP. I have since taken the monitor back. No side effects from the meds. No swelling.

[proactive]

My blood pressure definitley increased after a few months on Prednisone. Doctor increased my blood pressure medication and I am monitoring blood pressure and hoping that it goes down as my Prednisone dose is lowered. However, I looked up "Prednisone interactions with other medications and learned that the blood pressure medication I am taken (Ramipril) has its effect lessened by prednisone so I intend to discuss this with. my pharmacist and doctor to see if a different BP medication is indicated.

[Freshairfiend]

gosh, thanks for that , very helpful. All the best.