Please ensure that your blood pressure is tested in each arm and take note of any difference in reading especially greater than 10. If this happens consistently it could indicate a blocked artery. This has just happened to me and I am going for an MRA scan.
So much for strong bones. Best wishes everyone and who knew!?
Good point. Most people have a slight difference so getting a baseline is essential to spot any significant changes.
My doc and rheumy have never taken my blood pressure over the 18 months of PMRGCA. How often should it be taken?
Crikey. one thing after another! Hopefully it's just a quirk and not anything else.
I have my blood pressure tested every time I go to gp or nurse or rheum but usually on right arm. And these days it's prob fortnightly. I do have hypertension so they are a bit ott about it. I do have a bp machine at home and have in past tested both arms. But it's done so regularly at moment I have not done it. Got a letter this week that bp being formally reviewed on 4th Sept I think it was. I will get them to do it both arms.
It is a side effect of Pred ( raised blood pressure) joat ask them to do it each time in each arm - sigh. We'll be operating on ourselves next! You can invest in a kit to do it yourself 3 x a day and note down the readings. 🌸
Hi ,
They should be monitoring it, raised BP is a well known side effect of Pred.
Actually you should have it checked at least annually anyway. I was diagnosed with it in my 50s when I thought I was a fit young thing! No symptoms, only came to light when we held a free medical check at work.
As SJ says easy enough to do yourself at home, but don't get paranoid about it.
Since Ive been off Pred have reduced the dose of BP tablets, so GP advised checking at home - not every day (no need) but at different times of the day (it varies). For most people it rises in the evening - but not me it's higher in morning! Never one for normal 🤔
Hi
DorsetLady
My blood pressure too is higher am much lower PM
I have put it down to amount of Pred in system am
Like my PM readings as normal
GPs should not renew prescriptions if on repeat ,unless blood pressure is tested once every year .
Good idea to purchase monitor yourself and keep a record shows better reading most of us has white coat syndrome
My husband is a retired healthcare professional - he obviously has white coat syndrome! We have our own sphyg and his BP for months has been hovering about 95/60 and below! Yesterday at the hospital it was 130/90 so he wondered if the sphyg was wrong - I hope not, It's been just perfect for me...
The same thing happened at the hospital with me this week with high blood pressure. I normally have quite low blood pressure. I had a Philipino nurse asking questions, I could not understand what she was saying. One question was do I whizz? It took a while to realise she meant do I wheeze! No wonder my blood pressure went up.
I had an Aussie midwife ask me "Has your tummy worked?"
You what????? I was in for pre-eclampsia.
Then there was the SA one who took my BP and had kittens. She switched off all the lights, dropped the bedhead so I was flat and drew the curtains and rushed off - without a word. She got a real dressing down from Sister - she hadn't looked at the notes or would have seen that this was "normal" for me. And was left in no doubt that whatever you did with this patient - you ALWAYS told her what you had just measured. Whatever the result.
The Philipino has just phoned I answered and she kept saying hello, so I put the phone down as I thought she was a scammer! She phoned again and I did not answer so she left a somewhat incomprehensible message. Jeremy Hunt wants to reduce the English language tests for foreign employees. Help.
Even the ones they have a not good enough...
I have nothing against healthcare professionals from ANYWHERE working in the NHS - but they MUST be able to communicate clearly in English at the same level I can. That is frequently not the case and it is downright dangerous.
Interpreters are available, for fear something may not be understood, for the elderly Indian or Pakistani lady who speaks no English despite having lived in the UK for 50 years. However - should I ask for one because I do not understand a word the doctor I have been allocated has said I would immediately be labelled as racist.
It was very funny at the hospital yesterday - in the absence of a German-speaking one we spoke in English with the radiologist. And the technician was desperate to speak English - please nicely!
I suppose it would be a bit much to get translators for the staff!!
My father had an orthopaedic surgeon who only spoke German with virtually no English, when my father broke his hip. Luckily my father spoke German. I am amazed that he was allowed to work in U.K. with so little English. He came from somewhere in Africa so I assume his parents left Germany after the war.
How strange! Suppose most surgeons worked on the assumption they didn't need to talk to patients...
That is a good point. Many years ago I had an orthopaedic surgeon who reckoned hospitals would be a lot better without patients!
They should test health professionals better, and those who don't make the cut, should be required to hire a full time translator..
Since being on the PMR/ GCA forums, my mind set , when dealing with PMR is in English..I don't know how to express ", wobbly legs" or "twinges" or "tapering" , etc. in Spanish, so I just use English with my rheumatologist , who took to it surprisingly well...we now use Spanglish, which I used to criticize but now find that it's the most effective way of communicating because you can express a concept with vocabulary from two different languages!
I have a friend, a neurologist who decided to go work for the NHS after his residency. His English was better than most Spaniards' of his age but nothing to write home about. He used to tell us stories of the problems his bad English caused him. He said he used to write his reports , referring to a miscarriage as an" abortion," ( Spanish doesn't distinguish between the two terms, it's an abortion whether provoked or natural. ), he wrote several such reports before one patient got very insulted and told him off😱.. His English is probably much better now, he eventually left the UK and settled in New Zealand, his bad-English tales were very funny.
In the US, medical translating is a fast growing career, some insurance providers include translator fees in their policies, some hospitals require a translator to come with a patient whose English is insufficient..it's surely getting necessary everywhere in the world, what I don't get is that in an English speaking country, a citizen with native - level English having to need a translator in their own country.. And when it comes to some professions, knowing advanced level English becomes a dire necessity.
There was a huge plane crash in the Canaries, once, where the pilot misinterpreted the intended message from the air traffic controller that used a verb tense wrongly - landing or taking off, I forgot which it was, can express the present AND the future. There was a head on crash between two planes because one meant " in the process of landing" while the other understood " will be landing shortly, as programmed" .
I hope something is being done about this language barrier problem.I don't experience it here in Spain so much, as most of the immigrants are from Spanish speaking countries, but when I visit the UK or the States, I encounter this problem frequently.
Reminds me of being hospitalised as a young woman with first pregnancy for 6 weeks prior to the birth- high BP - pre-eclampsia. My mother - who was very unwell at the time (think now GCA) had walked miles to visit me - and they checked my BP while she was there. It had rocketed so they thoughtfully 'threw' her out - I was then VERY upset - my BP would have gone off the scale. I have also recently heard a radio programme - Australian 'Health Matters' - with discussion about unreliability of BP cuff monitors - the type many of us use at home - oh well ....
My blood pressure has always been solid as a rock, but like Piglette, it was up recently during visit to hospital. Nurse said this wasn't unusual during a hospital visit as anxiety was increased for many patients under these circumstances. Will get it checked again at docs though since I didn't know that pred increases bp. Thanks for the heads up.
I have been "lucky" that last 3 times I have been done old fashioned way and it was in "normal" range. The fat person cuff at hospital never works and almost popped a bicep.
SJ - I'm ashamed to have to say this but I can't remember: are you a query GCA person?
The uneven BPs in the arms can be a sign of subclavian steal syndrome - which is a rule out with GCA. Of course they rarely do it in both arms - but the inability of the average GP to check BP these days is concerning...
More praise for my new GP. I gave him my BP reading at review on last visit; he then did a check on each arm and I'm now to have a 24hour BP test next week- but I'm not sure how this works. I have only been monitored over several days for heart rhythm previously .
The device is a BP cuff on your arm as usual which is attached to a recorder and power pack on a belt around your waist. Mine inflated briefly every half hour during the day and every hour overnight (sometimes it is more often) and the BP is recorded automatically. As with the heart rate Holter you are asked to keep a note of your activities and times, and stand still with your arm straightish while it is measuring. I thought I wouldn't be able to sleep but it was nowhere near as bad as I expected.
bloodpressureuk.org/BloodPr...
Wear clothes that will be easy to take on and off and nothing tight on your arms.
PMR is my diagnosis but as you know Dr Mackie is very thorough. Not looking forward to an hour in a steel tube!
No chance of a snooze either with the clunks of MRI machines!!!!
When are you having MRA Jane? Will you let us know how it goes?
It is an MRA looking at the blood vessels. I will get a letter soon. This would never have been picked up if I hadn't volunteered for the Fatigue research Study. I will let you know. I wonder if GCA would show up in this type of scan? I hope mindfulness works in a steel coffin failing that Diazepam I think.
I am having a MRI scan on Monday AM, not looking forward to it as I am claustrophobic!!!!!!! My GP has given me Diazepam 2mg wt*, she has given me 2 in case it gets delayed oh sweet joy. Think of me please.
I have had three MRIs over the years and had to pretend I was camping in a tent and keep my eyes shut tightly. I found the noise nicely distracting, though for one 're prolapse disc the pain distracted me. The surgeon told me off for producing blurred images but I was shaking. Surgery 2 days later.
overall I was ok. But got claustropbia in a two person tent some years later. 😊
We will think of you on Monday Jannie clutching your panic button but hopefully floating away on a pink cloud of Valium. Don't forget to breathe steadily and make sure you are not tensing up anywhere as it makes you feel worse. Let me know how it is, mine will be any day now and I am a big baby!
Thank you so much Poopadoop and SheffieldJane for your very helpful advice it sounds very useful. So I am in a tent with my eyes closed and floating away on a cloud of Valium, I am almost looking forward to it. Once again thank you, I will let you know what happens.
Jannie x
please do let us know and make sure they give you under knee pillow. more comfy.
Had MRI scan this morning and I am still here lol. I was given a knee pillow (had to have one because I am in agony with my back if I try to lie flat). Valium was useless I would ask for a larger dose next time but I survived, it was only (!) 10 minutes, let's hope it was worth it.
Hope yours is OK SheffieldJane in truth it probably wasn't as bad as I thought it would be good luck any way and thanks again to you and poopadoop for your info it was most helpful.
Jannie x
Well done Jannie. Thanks for the tip about Valium. Does that mean you were wrestling with yourself all the time? Mine is an MRA looking at blood vessels, for about an hour.
No not really, I was allowed to have my wonderful hubby in the room with me, however he had to take out his hearing aids and leave them in a box in the other room but he could still hear me bless him, weird. Best of luck with yours and keep us posted
Jannie x
well done. glad you survived. I never even got offered and lovely valium lol. again well done and I hope the results help !!
Hi Poopadoop, I did not get offered Valium I had to ask. I phoned the X-Ray dept and was told to talk to my GB, I did and she gave them to me. It told me in the leaflet I had in my apt letter that I could be sedated but didn't say who by. Mind you they did nothing only had 2 x 2mg durh. Doctor said I could not be "sedated" per se.
Jannie x
aah. I had been waiting 8 months with herniated disc so probably wasn't in a mind to ask. and was full of df118 and other supposed painkillers.
the other two.times no one said anything and just left me to.it lol.
Oh dear I bet you were in a state.....still you know now if you need any you have to ask. I was lucky because I thought they would do it at the X-ray dept but my daughter told me to find out "just in case" .
I am dreading my sister ever having to have one. She will have to be knocked out. She can't even talk about mri machines lol. keeping fingers crossed that she never had to have one. even when I say it's not bad she practically has panic attach bless her.
Oh dear, you will have to tell her about sedation if the dreaded day ever comes x
Glad you didn`t find your MRI too exhausting. I was so fearful about mine but luckily was warned by friends of the cloncking and also to ask for the music to be loud! I got on the table and immediately closed my eyes and did not open them until I felt the table lowered and told all finished. Would not worry again.
Have only just read your previous posts.
You ll be fine. Just focus on some really nice things.
At my last scan I was in hospital.
My problem then was stones.
Feeling really queezy I was having kittens clutching the bed pan on the way down
But not wanting to miss the scan. I must admit I did clutch the button.
I was fine.
All the best and relax. 👍
I've noticed that when I take my blood pressure at home my left arm is always higher than my right arm. In fact often times significantly higher. I thought it was a fluke thing. But I will have to get that checked out.
It can be just a quirk Amkoffee, I think they are being super careful but have it checked. Record a few at different times of day in each arm to show the doctor.
I've been reading more and more testimonies on the forums from people dxed with PMA that seem to have subtle symptoms of GCA.I have strange headaches..like a stabbing pain ( ice pick?) , tender to the touch temples, shooting pains on one side of the jaw, and blurry vision.. I've had these symptoms off and on from day one .PMRpro , I even remember, thought at one point , months ago, that I was incubating GCA.
I'm wondering if these symptoms are due to the severity of PMR ..being closer to GCA on the spectrum, so to speak.
Checked my BP on both arms, thank you Jane for bringing this up, and I too have about a 12 point difference.
What does your doctor say?
This really deserves a post of its own. DorsetLady is our resident expert on GCA.
And yes I get temple twinges and a constant woolly head that becomes pain at times and eye strain.My doctors say it is unlikely to be GCA but has put great emphasis on visual disturbance and double vision. I also get the impression from DorsetLady's posts that more reliance was put on blood test results.
i have been un similar position. today I had another of the sharp stabbing pain at base of skull on left top of neck and for 10-20 seconds it stops me in my tracks. It's happened about 6 times in past 12minths.
I saw both gp and rheum nurse yesterday. Had usual blood pressure done at gp the old fashioned way (can't spell proper word 😂) on right arm and was "fine" so just asked if I could have left arm checked too. The look on her face! I explained why best I remembered. She tried but the tube twisted up or so she said. So I just got left arm done at rheum nurse. But couldn't remember by then what right arm was. Upshot...blood pressure controlled at moment.
I was interested that the rheum nurse said that they will automatically do Synacthen test at 3mg.
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