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Blood pressure

Hi. Why do they take your blood pressure before every rheumatology appointment? Mine is always very high. The nurse always says "Ooh it's very high" then writes it down and then nobody ever mentions it again. Any ideas? Am I missing something?

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Your BP gives an indication of the state of your cardiovascular system, a high BP suggests that you are more at risk of a heart attack or stroke for example. The sedentary lifestyle RD forces upon many of us also puts at risk, due to the inactivity and often accompanying weight gain.

Some of the drugs we take for RD can also raise BP eg steroids. If BP rises too much it might mean having to stop the drug or have BP controlled by antihypertensive drugs. Many of us on this forum do take antihypertensives.

BP also rises in stressful situations , going for hospital appointments being one of the situations when BP is likely to rise , therefore it might not be truly inducative if your actual BP ! But if it is constantly high at every hospital visit your GP should be asked to monitor it for a bit. My rheumatologist asked my GP to do this, then I was prescribed antihypertensives. you should ask if noone is acting on your BP if it is raised.

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Yes, but why take it if no one is going to do anything when it's abnormal? They don't even mention it in my GP letters. I just wonder if this is the norm.

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whaleroad you need to ask why nothing is done about your high BP !

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How high is it? As nurse's can say "that's high" when it's only just a touch above normal so will be put down to you being in a stressed situation (ie a hospital). But if it's really high then that's dreadful.

Either way, get it checked.

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Just flicking through my notes, the highest has been 158/111 and it's rarely lower than about 148/104. The highest was earlier this year when the consultant was on the verge of writing me a prescription for ciclosporin, then asked me what my blood pressure was like (it was written down in front of him). I got Benepali instead!

I had a 24-hour monitor about 6 years ago and they said it was a bit high overall but not bad enough to need medication. Back then I was fit and very active. It seems to be hereditary with me.

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My rheumy alwys checked my BP it is consistently high (186/132) and my GP was asked to monitor it. I'm on 2 BP tablets.

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Woah, that's high.

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Well 148/104 won't get you any prizes....are you doing all the proper things to try to keep it in check?

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I've always had high blood pressure, even at my fittest. There is a hereditary element, but there's no doubt that the last couple of years have made it worse. I'm currently totally unable to do any aerobic exercise, or even walk far, due to chronic Achilles problem - I have PsA. I've also been advised not to swim because of this.

The thing is, no doctor has ever given me any advice about my blood pressure. I'm intelligent enough to know what I need to do, but it seems odd. Are they worried about patronising patients?

My cholesterol is generally pretty good. My diet is very good. My BMI is fine. I do drink alcohol, but I was once rejected for minor surgery (impacted wisdom teeth) due to my blood pressure so I completely gave up alcohol for six months and it made no difference to my blood pressure at all. That was when they put me on the 24-hr monitor - I eventually scraped a pass and had the surgery.

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That's not fair!

Maybe you need to look at aerobic exercises for different types of diability? I have a heart valve problem, so turn into Ms Tomato Face at the slightest exertion, and have to force myself (although I've never had a clear answer as to whether I should or shouldn't......). Anyway have chosen to believe the theory that 3 minute intense activity is as good for you as hours of low intensity stuff... so frantic pedalling of arms & legs from comfort of your armchair perhaps?

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I sympathise with the chronic achilles problem with PsA but I don’t get why you’re advised not to swim because of PsA. Did they say why you shouldn’t?

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It's just until the Achilles heals. Seemed odd to me too but apparently unless you've got a really good swimming technique (I haven't) then this can aggravate it. I suppose one solution is to have some proper swimming lessons and develop better technique, but I wouldn't have time to go very often anyway.

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That makes sense I suppose. Funny you mentioning swimming lessons because I’ve just completed a training course to teach swimming which is why I wondered about advise you were given. I find the more active I am the less stiff I get (Achilles hobbling aside). Hence my decision to do something that doesn’t mean sitting at a desk all day.

It’s possible to swim with no kick at all to protect your ankles. I do lengths on my back using arms only as it reduces my neck/shoulder pain which comes on if I’m doing breaststroke too long. And is good for the arms of course 🏊

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Same here.

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I would say that reading is still not great is that with the BP medication?

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The standard is 130 over 80. You are extremely high. Watch for stroke symptoms!

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Please don't frighten people, this is not extremely high even tho' above ideal if you are referring to whaleroad. The NHS recommendation is for blood pressure to be below 120/80. And although high blood pressure is defined as above 140/90 quite often the doctors will first look if this is consistent. It can merely be fluctuations and your average is ok.

Poemsgalore is a bit alarming, but she is being monitored thankfully.

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When my blood pressure was similar to hers, I was sent to the ER by my rheumatologist ASAP! They said I was at stroke levels! It is nothing to mess around with, as you only have one life!! Take it seriously! Please!!!

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Your answer said you were replying to whaleroad whose BP is only just above normal....

But yes it should be taken seriously of course if v high, and carefully managed if heading that way.

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They don't care ... Very bad indeed. Why don't you mention it to your rheumatologist and GP? After all it's yout body, your life. High blood pressure is dangerous as you know. Good luck in making sure they do somethig about it.

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You are fortunate...I'm very rarely even looked at! 🤣 my GP does my blood pressure for all the reasons mention by Mmrr.

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Yes, ask! Or go see your GP specifically. With RA you should have a cardiovascular assessment once a year - or if not a full assessment then at least someone taking your BP and listening to your heart.

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What is a cardiovascular assessment?

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Doc should run through your lifestyle to identify risks, check blood pressure, listen to your heart, blood tests for a couple of things and that sort of thing. You can also ask for a healthcheck, here....

nhs.uk/conditions/nhs-healt...

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Nope never had any of that

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Ask! Please ask.... everyone please ask! And if GP doesn't agree then politely dig your heels in.

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I have never had this. I have an annual asthma reviewapart from blood premiere check I don’t have any other checks

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Hi, do you get a cardio assessement once a year? We should but here in UK not the case,as far as I know. I believe you live in France?

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You should be offered one either by GP or rheumy. And if you're not you should ask as it is part of the NICE recommendations for managing patients with RA. The NHS is so overloaded that it is rarely automatic, but if you are concerned you should ask.

pathways.nice.org.uk/pathwa...

It says....

Offer all adults with rheumatoid arthritis, including those who have achieved the treatment target, an annual review to:

assess disease activity and damage, and measure functional ability (using, for example, the HAQ)

check for the development of comorbidities, such as hypertension, ischaemic heart disease, osteoporosis and depression (for more information, see what NICE says on hypertension, osteoporosis and depression)

assess symptoms that suggest complications, such as vasculitis and disease of the cervical spine, lung or eyes

organise appropriate cross referral within the multidisciplinary team

assess the need for referral for surgery (see surgical treatment)

assess the effect the disease is having on a person's life.

You can also ask for a free NHS Health Check every five years if you're between 40 and 74 years of age and do not already have heart disease, stroke, diabetes, kidney disease or high blood pressure. If you're registered with a GP surgery that offers the NHS Health Check, you should automatically get an invitation.

(I have a heart problem, so I do get follow ups not as often as I should, but every now and then).

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Thank you for the link. Most useful information. Will print the recommendations.

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Mine has never been taken 😙

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Ask at next GP appointment! Mention you would like to be checked because of the cardiovascular risks with RA.

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I despair when I hear that basic monitoring checks are not done at each rheumatology visit.

No excuse is acceptable.

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Monitoring is good. But it’s only monitoring if somebody actually looks at the results.

Sorry, I have a long history of tests etc that aren’t acted on and I was a bit ranty about it last night with a friend.

They weigh me too. I lost about 10kg in 3 months after starting hydroxychloroquine. They didn’t even notice, and it took me below the recommended weight for the dose I was on.

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it's good to rant sometimes !

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I’ve never been weighed & I’ve been taking hydroxychoroquine for over six yrs.

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One thing this forum has really opened my eyes to is how varied treatment is across the country.

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Mmrr, do you get weighed, asked for urine sample and get BP taken at Rheumy dept WGH on each visit? I do. And Rheumy discusses the results before making her decision on my health care. Anyone that doesn't must get proactive about it. Ask for it! If they refuse, ask why! See your GP! Never walk away dissatisfied regarding your own health!

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Hello again ! welcome back.

yes I always have my urine, BP and weight checked before seeing the rheumatologist. Basic , but very important information.

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Thanks! What am I like! haha. I was just reading but it's difficult not to post when you feel you can contribute to someone's situation. I promise to do it less though! Hope things are better for you Mmrr. Xx

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Nor me! Have lived in spain 13 years diagnosed in 2014 and no doctor has ever taken mine.

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Take 100mg a day of coQ10. Reduces BP and helps RA.

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With a fatty meal

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They check mine at every visit . Say ooh that’s high and then don’t write it on my GP letters .

I told my GP myself , had a 24 hr blood pressure monitor and was immediately given blood pressure medication . My top number was quite high but the bottom number was averaging 109 which is far too high apparently .

Definitely be pro active I would say .

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I’ve just remembered my first ever rheumatology appointment. The nurse told me to flag it up with the consultant. So I said: “The nurse asked me to mention my blood pressure”. She glanced it and then changed the subject. Goodness she was awful.

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Ha :). Mine does that too . Looks terribly offended that someone may think it’s something outrageous like part of her job !

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I’ve seen my rheumatologist several times in six yrs (twice normally a yr although it was four times in the 1st yr) & only once has he taken my blood pressure & that was about three yrs in. My gp of three yrs has never taken it. I’ve never been weighed or asked to produce a urine sample. Had lots of bloods taken & scans/X-rays.

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It's called White Coat Syndrome. We get a bit stressed sitting waiting to see what joys the doctor has in store for us.I bet if you had BP taken on the way out it would be normal.

If it was unusually high you would have been offered BP meds...so it must be within normal limits for your age/weight.

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I think that taking your blood pressure should be a GP or practice nurse job, not a random check at hospital when you are already stressed. And what is the point of doing a test which is not going to be looked at or acted on by the medical team?

It is often these repetitive things that 'have always been done' that take up time and resources. For example, it always used to be the case that your urine was tested when you went to the out-patients department. No-one ever did anything about it. Then people started thinking this was a waste of time and, if you were looking for diabetes, a blood test would be more accurate anyway. So they stopped.

So challenge the procedure, and get your BP checked under more normal circumstances.

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Exactly! Great advice. 👍

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I refused to give urine samples at the hospital after the first couple of appointments as they never did anything with it. The nurse told me I had to, but when I asked why she couldn't reply so never asked me again. I now have proper urine test that is looked at once a year.

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My blood pressure is always taken at my rheumy visits, and I do suffer with white coat symdrone. They usually ask if I am on bp meds which I am. I went to my GP when my blood pressure was taken for various hospital visits, was always high. I was advised I should get it checked. This was 13 years ago and my surgery is very good on follow ups as RD and the meds are a big factor for high BP. Definitely go to your GP. X

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ow reading some horror stories here :)

I have my bp taken on every visit for a blood test and rheumy nurse appointment, nurse at gp surgery has taken to writing it down in my mxt booklet. I was told it was a bit on the high side (highest 154/83 lowest is in the high 130s to low 140s/ assortment of 80s). Last blood test the nurse suggested I see doctor and to monitor it for 7 days before appointment .... doc looked at it and said not much to worry about .

Oh white coat syndrome :) yep my first appointment with consultant bp was high and she told me it was down to this.

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Personally I would ask your GP again about this. You have RA....

Many GPs surgeries will lend you a BP monitor for a few days so you can check it at home, when you are relaxed. And if it's consistently over 135/85 then they should be discussing ways to reduce it with you.

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U are lucky they don't do anything .mine is always up at each visit .I'm already on BP tablets .I got a text from my GP surgery to contact them .when I did was told rheaumtology had told them my BP was high now I have to attend blood pressure clinic .I'm not complaint as they are keeping an eye on me as my mum died at 62 complications of high BP and heart attract amy

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Hope u get something sorted out soon x amy

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I am surprised at this as I have never had my BP taken at my rheumy appointments 😮 sometimes my GP takes it but I don’t go there very often so it’s not done regularly.

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I get weighed and have my BP taken nearly every time I go to rheumy. Not sure if it's the same for everyone or because I've had a slight heart attack. I make sure I ask if my BP is ok, which it usually is. Weight has been steady for a long time which is pleasing as my activity level is low. My pulse tends to be a tad over 100 but I put this down to white coat syndrome as I'm always a bit uptight when I need to see my docs.

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Pain can raise your blood pressure, kidney damage from all the drugs we take, it’s just responsible to check it often.

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A very timely thread. I asked GP to do mine last week as I did wonder if it was high. It was normal when I was diagnosed with RA around 2 1/2 years ago. Now it’s shot up to bottom number around 112. Eeek! GP said it’s probably the steroids, but I’m now on tablets for BP too. I’m hoping it will normalise when I stop the steroids for a third time! It’s definitely the gift that keeps giving.

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Never had mine taken at a rheumatology appointment, but I'm not on steroids.

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When I attended the smaller, local hospitals, they did weigh me and do urine test and BP. Now that I attend the much larger, world renowned teaching hospital, they don't do any of these checks!

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I have blood pressure taken at just about every appointment in every department I’ve ever visited... of which there are many.

I often get the opposite and my blood pressure is mentioned as low, often 80/60

Average of 100/60 but have known the bottom number to go into the 50s

No one ever does anything except tell me not to stand up to fast or I might get lightheaded but if I have a too hot bath my head pounds and heart races when I get out.

I know it’s deemed healthy to have normal or low blood pressure but I’m sure it can be too low as well as too high and I feel a bit peeves that nothing is discussed for mine, except one nurse once telling me to eat more salt...🙄

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Was it me who wrote this? Could have been as it's almost exact story as mine including the nurse and the salt!

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Oh! Thank you, I’m not alone 😂

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Other than for my very first appointment, my BP is never checked.

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Thank you for commencing this thread - whilst new to this group/forum I have learnt a lot already!

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GP needs to sort out blood pressure that’s what I was told by a he rheumatology department I’m under.

Blood pressure was always higher than it should at my appointments. Could have been white coat syndrome so asked if I can take my BP at home. (I have a monitor) readings were higher than they should be. GP arranged 24 hours monitoring and told my BP just above normal and gave me a small dose anti hypertensive.

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Precisely. These are not the right conditions for measuring blood pressure. The only time I can see it being useful is if someone presents in hypertensive crisis, but one would hope that person was under the care of their GP. Just seems like a waste of time for the nurses/HCAs who could be doing something else to support the patients and doctors.

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I moved from Kent to North Somerset 2 years ago and in the dr’s waiting room there’s a do it yourself blood pressure kit. There are also certain times in the week when you can book to have it checked by a nurse. Why can’t this be standard practice ?

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Yep, my GP surgery has them in the hallways and you can print off the result to give to the doctor.

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I think that it is because RA is linked to many other complications: heart disease, strokes, cancer etc so a full-check is done regularly. Plus we tend to be on a lot of medications so it is part of checking for adverse-effects like kidney or liver damage.

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Hypertension can be hereditary so if your mum / dad had high blood pressure you may have it because of that. My BP is always high at appointments but this is because the rheumy dept is right at the other side of the hospital and it’s such an effort to get there. I always manage to see a GP who is right down the longest corridor too. I bought myself a monitor so I could check it at home and it’s fine. I’m pretty sure it’s not white coat syndrome with me just the sheer effort and pain I go through just getting to appointments. If I was you I’d go see your GP and get it monitored for a week and then discuss medication based on the results.

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Hey. Yes mine is almost certainly hereditary and has been monitored in the past. Yours is another reason why these are not good conditions for taking blood pressure - my department will call you in for the check almost as soon as you’ve arrived, often after I’ve just walked 2 miles there.

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So why are you not on blood pressure tablets? I have been on Ramipryl 5mg for years.

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This is the question...

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For those who don't get BP and other tests at Rheumy appointments, I would tell the team you are on this forum and other folks have it done at their hospitals as a matter of course. I have health checks each time. Bloods, weight, urine sample , BP. Obviously necessary so find out the reason why this isn't being done. X

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And those who do, need to make sure it’s being taken under the right conditions and that someone is paying attention to the result.

I suppose the point of my original post was that I feel my rheumatology department are just going through the motions; there doesn’t seem to be much “care”. I’ve been in that situation where you’re so overworked you just do what you can to get through it and there’s no time to question what you’re doing or whether it could be done differently. So I sympathise with them to an extent but I also think we patients could start doing some of the questioning too.

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Yes and that's when mistakes happen. They panic after the horse has bolted. It's sad that we have to push for things that should be automatic but as you say, some overworked staff just want you in and out and onto the next patient as quick as possible! Sounds like I am fortunate at my hospital but if that wasn't the case, I would be onto them AND finding out results and what that means in regards to my ongoing health care. X

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Another tip for stable BP reading. Don’t have coffee or tea (caffeinated of course) for at least an hour before appointment and don’t talk whilst it’s being done just concentrate on steady breathing. I always focus on something in the room and ignore questions if possible. It doesn’t always work if you’re in a great deal of pain and have had a long walk or journey to appointment but if you think your BP is normally ok it is possible to fudge it.

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