BP problems

[Janann25]

During my almost two and a half year journey, I've had many side effects from the Pred but my BP has never been a cause for concern. I take a tablet called Verapamil to help with both my BP and an occasionally erratic heartbeat. This has kept my BP under control for many years - until last Monday. I've had symptoms of dizziness and occasional headaches ever since I started on Pred but nothing like the ones on Monday. First of all I thought it could, in some way, be associated with the fact that I'm currently reducing, VERY slowly from seven and a half each day to seven but then thought that maybe it could be associated with my BP. And it was!! The BP reading was 210/95, which was rather different from my usual average of 132/78. So after two calls to 111, I eventually spoke to the on-call doctor who ordered an ambulance which arrived in about half an hour. Never been in an ambulance before and never been a patient in A&E so I have to admit I was scared. I don't have any family and, as this happened about 11.30pm, I didn't like to phone anyone to come with me but the doctors and nurses were so kind. I had many tests including blood tests, eye tests and a CT scan and was then given pain killers and a medication to bring down my BP. Eventually it was all brought under control and I was allowed home. I obviously asked why my BP should raise so quickly - CT Scan was OK - and was told "probably to do with PMR or steroids". I've had to see a GP during this last week because BP increased again but not to the same level and is now running at about 145/84. Anyway, the reason for this rambling post is to see whether anyone else has experience something similar. I don't know whether to stop tapering because the PMR could be causing the problem or whether to continue with the taper in case it's the fault of the steroids. Help please!!

Jan

[SheffieldJane]

Oh Janann what a frightening experience and a salutary warning to us all. My blood pressure hovers at the high end of normal and I am on 50 mgs of Atenolol. I have my own Sphygmomanometer and these days rarely set it up. I am supposed to monitor it regularly. No excuse.

Your post does not ramble. If my symptoms were settled, I would continue to taper. My guess is long term steroid use, being a contributory factor, even Adrenals. Ask the doctor in charge of your condition. If the stress of all this has upset PMR, perhaps wait a week or so. Big hug. Xxx

[Janann25 in reply to SheffieldJane]

Thank you so much for your reply - and for the hug, much appreciated. I have an appointment to see yet another doctor tomorrow and hopefully the next blood test and BP reading will be fine.

Jan

[Hidden]

Oh dear janann, scary. The year before I was DX my blood pressure which was a bit high and treated with diuretics suddenly went 202/101 on my bp machine. I went to the dr's the next day and was 160s/90s. I was put on linsiprisol which didn't work at first, the amlopidine - which was horrid so back to just linsiprisol. After a few month it got lower and once DX and put on pred it's been slowly and regularly well controlled. I am sure the very high readings were part of the lead up to PMR but only have my feelings to back that up. As pred has got lower it's got better. But don't forget successful taper probably means PMR controlled. I would definitely be talking to the Dr about your next step. Do you have any other PMR symptoms?

Hope it doesn't happen again. These things are scary when you are by yourself.

Can you discuss with family and friends what they could do if it happens again. I wouldn't have and didn't think twice about driving 100miles to get to both parents in hospital during the last few years. 🌻

[Janann25 in reply to Hidden]

Thank you for your kind reply. No, my PMR seems to be behaving quite well at the moment - fingers crossed 🤞 - which makes it all the more weird that this has happened. Unfortunately I have no family but have some lovely friends - who have all reprimanded me about not contacting them! I think it was just the fact that it was so late at night that stopped me from ringing anyone.

[Hidden in reply to Janann25]

I would be hopping if my friends did too. That why you need an agreement between you. . keeping my fingers crossed too.

[Pristina]

Hi Janann, i had similar thing about 5 weeks ago - went to gp really breathless etc, took BP and it was 180/120 or so, so he immediately did spray under tongue and sent me to a&e in am ambulance then put on amlodipine - went back to my rheumy and referred to cardiologist - all ok although bp on highest level of normal scale, told to stop amlodpine and reduce steroids at quickly as possible - in the meantime have also recently got diabetes, again steroid induced. Now down to 5mg and having to stick there for a while as aches coming back, but it does seem quite common for these things to happen. And apparently imrpove as you reduce to low levels of pred! Fingers crossed ..

[Janann25]

Thank you so much. And yes, I've got more than my fingers crossed at the moment 😉😀

[Koalajane]

The only time my blood pressure raises is when in go surgery or at hospital. When my go took mine it was always 180/80. She put me on lisiniprol and amlodopine and it still stayed the same. She said a few times “do you test at home?” I decided to get my own meter and lo and behold my bp is usually around 120/60 or lower. Just done it and it is 111/61. My nurse is fantastic and I feel relaxed when she takes it but it is usually higher than my home reading at 150/65. I don’t understand how this white coat syndrome works. Before my diabetic review I take my bp 3 times a day for the preceding 5 days and she is happy with that.

Hope your doctor gives you some good advice. X

[Janann25]

Yes, I have a BP machine at home and that is the reason I knew I had a problem when I took it myself and saw that it was very raised! Hopefully the doctor tomorrow will be helpful.

[Hidden]

My B/ P has been raised by pred, but never to such a frightening level. Sorry you had to face this alone. Every flare I had, needing an increase in pred meant altering b/ p dosage , but never happened while reducing. All I can suggest is monitoring as you are. Will follow how you do. Best wishes 🤗

[Hellyowl]

My bp has gone up and down all the time I have been on pred. I had a heart attack a few years ago and the bp medication made me so sluggish and ill, especially ace inhibitors I stopped taking it and upped my exercise. I check it at home and if it seems to be a bit high I do a bit more exercise and it seems to settle.