Opinions please - do I need to worry?: Sitting here... - PMRGCAuk

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Opinions please - do I need to worry?

marionofnorwich profile image
35 Replies

Sitting here feeling a bit concerned. I have been on pred since August 2020 and currently on 4mg. Apparently have adrenal insufficiency according to my rheumatologist in Norwich.

My BP has been raised for a while but is normally stable somewhere between 138 -150 systolic and 72-76 diastolic. I agreed last week to take a week of results to supply to the GP as a routine check and for most of the week it was what I would expect but yesterday I was getting very high readings 175/84 and 168/90. Today a little better but still high eh 168/84 and 161/91

The question is - tomorrow is Friday. I can call the GP in the morning or write an email tonight (often quicker than trying to phone). Or should I go to the drop-in centre (long wait) or A&E?

In other words, how worried should I be, or should I email the surgery and monitor over the weekend?

Any thoughts? Please

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marionofnorwich
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35 Replies
PMRpro profile image
PMRproAmbassador

I don't think anyone would panic and medicate you as an emergency with those readings. It isn't an ED job. What have you been doing the last couple of days? Are you worrying about reporting the readings? Been eating out? Unusual sugary food/drink? Have you been drinking enough (water not alcohol!)?

I would email them tonight with the readings and maybe follow up with a call in the morning. And don't worry!

webmd.com/hypertension-high...

marionofnorwich profile image
marionofnorwich in reply to PMRpro

No, in fact been quite lazy compared to usual and not much alcohol/coffee/sugar etc and no obvious stress. I did take Amlopodine in early 2022 which didn't agree with me (swollen feet on 5mg but really, really swollen legs on 10mg). I still have some of those tablets, and some Indiapamide and could take those I guess

PMRpro profile image
PMRproAmbassador in reply to marionofnorwich

Can't win sometimes can we!

marionofnorwich profile image
marionofnorwich in reply to PMRpro

No, and the more we look, the more that goes wrong. Most of my friends are in blissful ignorance. Probably also got high BP but just don't know. Am I any more likely to explode than they are? Probably not!

marionofnorwich profile image
marionofnorwich in reply to marionofnorwich

Thank you for the comforting reply! Will test again before I go to bed maybe

marionofnorwich profile image
marionofnorwich

Maybe I should also have said that I have an extremely strong pulse in my neck. It has been there a long time (couple of years but not pre-PMR). Dr Max Yates noticed it and also a bruit in my neck/subclavian area which was ultra-sounded for sugns of GCA, although none found thank goodness. I asked later whether I should worry about the bruit and the bounding pulse and he didn't think that there would be any action taken. It is true that I probably do need to reintroduce myself to the GP after more than a year (since referral to Max) but never quite sure where to start (or finish). No headaches though but quite stiff around neck and shoulders

SheffieldJane profile image
SheffieldJane

you could try 111 for advice. I did the other week and they were able to get me into my surgery because if was of sufficient priority.

marionofnorwich profile image
marionofnorwich

Thank you, I will try the GP route in the morning, they are usually quite good especially if I message them tonight. Though I fear it will be a long email - I have been somewhat putting it off (for general things) rather than high BP, which has been just over the ideal most of the time up until now. Baffling!

marionofnorwich profile image
marionofnorwich

So, just did 7 readings in a row. The first was 185/80/88 and the last was 138/69/82 so qyite a range within a few minutes. The ones in between dropped from 185 to 166, 159, 155, 143,140 and then 138. So I am going to bed!

Grammy80 profile image
Grammy80

I just wanted to add....when I take my BP at home, it is always higher than in a medical office. I guess I'm some sort of anomaly, but in the office, they say 126/68, and I want to say "ME?''💞

marionofnorwich profile image
marionofnorwich in reply to Grammy80

Thanks, I haven't had that phenomena, and I always make sure I am relaxed and not had a cup of coffee or run upstairs just before to try and get consistent readings, same chair, feet flat, arm relaxed and at same height as my heart, roughly anyway. It is annoying as I am reasonably active (as much as PMR will allow), eat a good diet, low salt and very little processed food but am overweight in spite of everything and I suspect that hormones are having an effect on my vascular system

Grammy80 profile image
Grammy80 in reply to marionofnorwich

I'm a little 'fluffy' myself.💞

proactive profile image
proactive in reply to Grammy80

You perhaps should take your BP machine in to the doctor's office and compare the readings to theirs in the same setting. It could be the calibration of either machine causing the descrepancy. If both machines get the same reading, then you know it's you, not the monitor.

marionofnorwich profile image
marionofnorwich in reply to proactive

Yes, I have done that before, or similar ie taken a reading before I go to the surgery and then they take it, it moreorless matches. I don't think I really have white coat syndrome. Not sure what it is just now but will keep an eye on it over the weekend and touch wood it will settle down

alansouthworth42 profile image
alansouthworth42

Hi , An 81 year old I have been taking prednisolone for some 15 yrs (PMR) I currently take 5mg daily as a maintenance dose and am intending tapering down. I take regular BP readings, if you are concerned about your BP I would suggest you take readings over 7 day period and submit the results to your GP. Hope this helps.

Pixix profile image
Pixix

I’m taking a week of BP readings at home right now. The instructions say to sit down & relax a bit before you take them. Yesterday, I’d forgotten & went upstairs & took one immediately while standing up…much higher. Sat down & answered two emails, then took it again, quite a bit lower. I think, too, if you get stressed, it will increase! At the end of mine, I add them all up, & make an average & that is what they are interested in…not individual readings. One if mine was 114/60, my norm is 130/80. If we weren’t taking these regular readings, we wouldn’t know!!

marionofnorwich profile image
marionofnorwich in reply to Pixix

No, I have wondered whether blissful ignorance is better - or not if a stroke or heart attack comes out of the blue but now I want to know if I have a problem, not just statistically in a category of people who are at risk so maybe time to ask for an ultrasound

Pixix profile image
Pixix in reply to marionofnorwich

I’m sure they will give you appropriate treatment. I think you are bound to get a variety of answers here, tbh! After all, it is a PMR/GCA forum! PMRPro will help on any subject, of course. But looking at the variety of BP results & comments here…. So wide! Surely if you need an ultrasound they will tell you when you hand in your readings?

marionofnorwich profile image
marionofnorwich

Hello Alan. Yes thank you. That is exactly what I have been doing and had five or six days as I would expect them (on the high side as they have been for the last three years, around 140-150) but then I was getting unusually high reading last two days but I will submit them today as I was due to anyway

Koalajane profile image
Koalajane

I went for a procedure at the hospital yesterday where they took my blood pressure, (help! The very mention of blood pressure worries me as I have white coat syndrome) it was 180/80. They said it was okay but I asked for the chair to be lowered as my feet weren’t touching the ground. After the procedure and before they took the cannula out they did it again. I had got stressed as I had waited for it to be taken out for 45 mins after being told it would be a 10 minute wait and hubby was doing circuits of the area.

With my feet on the ground and stressed it was then 170/70.

I get so annoyed when hospitals do bp because so often they ask questions while doing it and don’t make sure you are comfortable

Broseley profile image
Broseley

Hi, I always get readings of 150 - 160 systolic in the surgery or at rheumatology. At home it's lower. We've discussed this before - they don't follow the guidelines! 1. They should relax you for 5 minutes. (I have to go upstairs for the nurse and she does the reading straight away!) 2. They should take 3 readings and record the lowest. 3. They should make sure your arm is relaxed (mine have me balancing it on the edge of a table) 4. They shouldn't ask you questions during the reading as you're not supposed to talk.

Mind you, if they do more than one reading, mine tend to go up! White coat syndrome.

I guess they're always in a hurry and don't have time to do it properly. At home, I tend to lie on the bed and relax for at least 5 minutes before taking a reading, and I always do 3. I get readings of around 136 systolic.

I'm on amlodipine and bisoprolol already and the only thing the nurse said to me at my last reading was to ask if I drink caffeinated coffee - I said no, then she told me to cut down on caffeine!

marionofnorwich profile image
marionofnorwich in reply to Broseley

I reacted really badly to Amlopodine back in 2022. 5mg resulted in swollen ankles and didn't reduce BP. Dose increased to 10mg and my legs swelled up unbearably, my shoe size increased by 1 size and my blood pressure went up! A change to Indiapamide (with a diuretic) didn't help so I stopped taking them. I think I need a review but will wait till next week and see if BP settles down

RaisinBran profile image
RaisinBran in reply to marionofnorwich

I have found that if you happen to be thinking of something stressful while taking your BP, your readings may be high. Knowing you had an unusual high reading, the more you fret while taking another reading, the more your BP will stay elevated. Even if you wait hours before taking another reading, you will still be anxious hoping that the reading will be somewhat normal. Definitely have it checked out! When taking your BP relax with both feet on the ground and have your arm at heart level , make sure BP cord is not kinked in any way and think relaxing thoughts. Good Luck

RaisinBran profile image
RaisinBran in reply to RaisinBran

Also, I don't know if this is permissable on this website, but my wife's family is from Norwich. Name is Nurse!

marionofnorwich profile image
marionofnorwich in reply to RaisinBran

Hah, yes Norwich is a nice place to live

pegpowell profile image
pegpowell

I have found that the more I worry, the higher my BP, especially after a bad dream or worrying about what may be a problem. I was taking it night and day, especially in the middle of the night after a bad dream. I also have mild tachycardia at night because of a medication I take that requires exercise. I take 5 mgs mediation for BP twice a day even tho BP does get high at times because of the aforementioned reasons.

random901 profile image
random901

Worry and stress certainly increase my BP. I no longer monitor mine obsessively, and when I do take a reading I take time to settle myself properly beforehand, having rested for 5 mins, feet on floor, using alternate arms which rest on a pillow, and waiting a full 3 mins before taking a second reading. I have also experienced poor practice by nurses regarding this in the past. And remember that magical 120/80 reading goes up with age!

Karenjaninaz profile image
Karenjaninaz

It is normal for the blood pressure to vary based on activity and nervous state.

One problem, not often dressed, is salt in the diet . Cutting back on salty foods has been shown to reduce BP.

When I’m nice and quiet, my blood pressure will be 120/80. if I talk about something very stressful it’ll jump way up; it’s very rare for the blood pressure to be completely stable except when sleeping. This is not an emergency. In my case I found taking a nice slow, deep breath and blowing it gently out of my mouth a few times will calm the sympathetic nervous system. One more thing. Are you taking any supplements?

(retired nurse-anesthetist here)

marionofnorwich profile image
marionofnorwich

Yes I take magnesium, calcium, Vit K2, a statin, occasional cod liver oil as well as 4mg of pred. Low salt diet, not too much (though some) alcohol, same ref sugar, cheese, carbs and all those things. I feel as though I have reduced what I can without being obsessive and/or anti-social - for example I have just been to a friends and she offered me a home-cooked parmesan and sun-dried tomato brioche. I could have said 'no I don't eat anything like that' but I didn't. Last night I had some crackers and cheese when I had decided not to eat anything else - but I had had a bowl of home-cooked borscht for dinner with no bread so probably I needed something. So I feel that I am reasonably good. It is more the sudden change/increase that is bothering me, when it has been bobbing along a bit on the high side but OK for the last three years, with no obvious stress. In fact normally I am much more under pressure than now, when I am feeling quite chill

Pr0jection profile image
Pr0jection

Hi Marion, like you I eat healthily and am active. I've been on 7.5mg prednisolone for 3 years. I'm not on BP medication and my readings can fluctuate quite considerably. I had an appointment yesterday with a cardiologist for a check up. The last check up was 22 months ago. In the days leading up to the appointment my BP levels were anything from 131/75 to 190/85 probably due to anxiety about the appointment. My GP had told me always to take 3 readings each time, and take the last one as being the norm. My appointment with the cardiologist went well, no problems at all. Just as aside, during the summer my BP can be quite low and in the winter quite high. Hope this helps. Good luck.

marionofnorwich profile image
marionofnorwich in reply to Pr0jection

Thanks, yes that is reassuring. I guess the bruit has unsettled me along with the higher readings but two days is not much in the greater scheme of things so I am not panicking yet but guess I would like some kind of exam by a cardio and/or vascular surgeon. I feel like they are looking for the signs of their speciality but not considering the broader picture - so the ultrasound I had was looking for GCA ie inflammation of the artery (brachial/subclavian I think) and as the scan head went along my shoulder, the consultant muttered (to his students) 'a bit of atherosclerosis there' so I kind of assume that he would have told me to check it out if he felt it was a worry but I really don't know. Like the orthopaedic surgeon decided that a knee replacement wasn't necessary but wasnt interested in anything else I could possibly do to alleviate the immobility I am experiencing. Frustrating!

winfong profile image
winfong

Ever heard of white-coat fever? It's when a patient isn't comfortable around medical staff and places and their BP goes up accordingly. I had a PCP who diagnosed that, suggested I get a BP monitor & use it on my own. My BP did eventually need to be treated, but that was several years down the road. Glad I didn't have to take those meds any longer than I needed to.

PMRpro profile image
PMRproAmbassador in reply to winfong

Prof Sarah Mackie told me the other day that SHE has a much higher BP when taken in the clinic environment!

Pr0jection profile image
Pr0jection in reply to PMRpro

Me too! That's what happened years ago when I first went for a check up with my new GP in Cyprus. He said "you have high blood pressure" and put me on 5mg amlodipine. After several years it was obvious (to me) that my bp was actually on the low side so I took in a months worth of readings and he agreed that I could taper off them. I now have a new GP who understands white coat syndrome......

marionofnorwich profile image
marionofnorwich

Thanks everyone, I don't think I am prone to white coat syndrome as the readings are consistent between home and surgery and mostly I do the readings at home anyway. And mostly I am not worrying about the result as I am used to the normal variation, it was just the sudden change that has thrown me. But thanks for your input everyone, it puts it all into context. I am feeling a bit weak and out of sorts anyway, probably because of adrenal insufficiency, maybe something left-field like long Covid which is a possibility

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