Advice please from anyone with a similar experience. I’ve had PMR for almost four years and with various flares now decreasing v slowly and taking 6mg daily. So far, so good.
Paid a visit to local A&E last night after suffering horrendous lower abdominal pain worsening over about a week.. UTI was diagnosed. Antibiotics given. My blood pressure however, had sky rocketed to 200/120. ECG showed some change in heart function. I’d been experiencing irregular heart beats for some time, known by GP but rather ignored. Though measuring BP at home fairly regularly had mostly been between 140-150/80.
I was given a 5mg tab Amlodipine and monitored but little downward movement, so given 2.5mg Ramipril and discharged. Told to pick up supply today and two sets of tabs to take each morning for 2x weeks then see GP for ongoing treatment. But as I’d had both last night, not keen on a double dose this morning. On reading the med notes see that taking Ramipril when taking Pred might increase side effects and talk ‘to the doctor’. So took just the Amlodipine. Has anyone had experience of these meds?
And might this increased BP be a side effect of Pred? Can’t talk to any GP until at least Monday. BP now down to 143/80.
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hi, I am not on ramipril but am on lisinopril and see the same warning appears as it does for ramipril. It does not have any adverse effect on me. I am also on amlodopine.
I believe the concern is that the ramipril will not work as well whilst on prednisolone. My lisinopril seems to work well enough.
Raised blood pressure is listed as a side effect of Pred. I am on Atenolol ( Beta Blocker) and Doxozosin. My blood pressure hovers around your levels too. With occasional , stress induced, through the roof readings. I have also been troubled by quite significant lower abdominal pain coupled with diarrhoea alternating with constipation, I also had frequent UTIs which I solved by being very careful not to cross infect and eventually investing in a Japanese style bidet toilet which is wonderful once you adjust to it. My GP thinks I have IBS but a rececent colonoscopy and then a capsule camera investigation showed diverticula disease which has just finished a bad flare of several months duration. I think Tocilizumab/ Actemra triggered this condition after my GI system being made vulnerable by years of Pred. I thought it might help to share this with you because it was quite difficult to obtain a diagnosis. I am now managing it quite well with diet and small portions of food. I am prescribed Buscopan which has begun to help and normalise things. I have had PMR for 4 years and was diagnosed with GCA/ LVV about 4 years ago by ultrasound scan. The arteries in my head are clear and they are monitoring my Aorta. My symptoms are less clearly defined than Cranial GCA.
Thank you for detailed and thoughtful response. It clearly reflects as you suggest, the complexities of what an abdominal pain might be a symptom of. I’m not entirely convinced it’s a UTI as no discomfort when passing water. And bowels good. But a wee sample showed an abnormality.Might be uterus /ovaries issue ?? but as antibiotics have resulted in lessening of the pan (tho’ still around) there must be an infection somewhere.
Blood pressure decreasing too, no doubt with the help of taking 5mg Amlodipine (x3 taken since Thursday).
Like the idea of a Japanese loo. How does one go about getting one.
They are becoming more popular, just Google Bidet toilets. I first experienced them in South Korea at Seoul airport. Amazing midway through a long haul flight, to Australia.. Not cheap but having nursed my mum through 7 years of dementia and witnessed the indignities she had to endure, I thought about my elder years, and how helpful it would be to have a loo that washed and dried you. It is lovely to feel so clean and I have had no trouble with the symptoms of UTIs/ Cystitis . We got a walk in shower too with a little seat. The only trouble is, my young son spends hours in there these days. 😂
I found your reply interesting. We have one ready to install. However, I'm hesitating after reading that they can result in UTI's . Presumably due to inaccurate use.
Thanks for this and good to know. Hypertension is q prevalent in my genetic make up but I’ve always been pleased that thus far I’ve managed to escape it.
Hi I am on Amlodipine and Losartin for high blood pressure. I have been taking a low dose of Losartine for years with no side effects but my blood pressure has really rocketed since I have been on pred probably because I have put on a lot of weight. My GP kept on increasing the Losartin to no effect so he added in 5mg of Amlodipine which works in a different way and my BP has gone down from 180/110 to a comfortable 127/80. Sounds like your BP is responding well (the 2nd number is more critical I believe). Phew. I don't think I have any side effects to either BP drugs. It seems it is normal for most people to need 2 different BP tablets and my rheumatologist was cool about taking more drugs. If you are worried about any drug you should go back to your doctor. I am lucky we have an excellent pharmacist who is happy to talk these things over too. I hate taking tablets but am hugely relieved my BP is normal. Mind it us a good idea to monitor it regularly at home to make sure. Great little machines on amazon..
Thanks for your reply. Interesting that you think there is a relationship between Pred and hypertension. Sounds as though you’ve found the ‘recipe’ for keeping your BP down and hope your PMR continues without further complications.
Recently had my Ramapril dose increased to 10 mg as Blood pressure spikes to over 200. I have been on Ramapril for over 10 yrs . Steroids since2020 for PMR . No issues so far.🌺🌺
Thanks for replying. Might this mean that Pred is related to your recent upward shift in BP? But glad to hear that these drugs work well when necessary.
Your BP is at the upper end of acceptable anyway but I would lay odds on the white coat syndrome effect having a lot to do with those levels! Some people have a raised BP in the clinical setting just due to anxiety - A&E is not your natural environment, Even MY BP goes up when measured in medical outpatients before an appointment! I've been in and around hospitals all my working life and I'm on medication. Never been on either of those though so can't really help there with experience.
However, the interaction is that pred may make the effect of the ramipril less - which doesn't really matter since BP meds need to be titrated to find the right dose for you and often in this sort of situation they use lower doses of 2 different drugs which in combination will get the result they are looking for, You are fine to take them but do keep an eye on your BP to be sure it doesn't go too low.
Thanks for these really useful comments. And yes aware of rising BP when anxious, which I inwardly was, mostly due to the horrendous lower pelvic pain. I often measure mine at home and if it’s on the high side take it again five minutes later after resting etc. The doc in A&E originally suggested it was the anxiety re the pain etc. that had flipped it up, but it was repeated x 6 whilst I was there and still v high. So asked for an ECG which showed ‘heart muscle changes’ hence the medication. But for months had an irregular heart beat where I can feel it just behind the sternum, on and off not related to stress/exercise. Quite random. Had an ECG in Aug last year after talk about it with GP but found to be normal then. Mentioned it since but ignored.
I am still working full time as an academic with a fair bit of stress around. I’m 73 but love my work. Retirement beckons this year so maybe stress levels will then decrease.
Typical GP response I fear - they expect to see everything in a one-off ECG which is the snapshot compared to the video at best, My problems didn't even show on 24 hour Holters. And why would BP fall while you were in the same environment?
I asked a top rheumy if a/fib was more common in PMR patients and she was quite evasive, saying that it is common in the age group anyway However, since then a study has been done that shows it is noticeably more common in r\various heumatic diseases including PMR. The cardios here are confident mine is due to the sinus node having been damaged by the autoimmune part of PMR.
By the cardiologist - not sure of the details. It's been well managed with medication until recently though I was having bradycardias and needed a pacemaker. But the bivalent Covid booster in November sent it mad so waiting to see the cardiologist about an ablation. Different hospital, 21st April. Can't wait ...
I had my first rheumatologist visit at the hospital 10 days ago and when they measured my BP it was initially 169/95. They re-measured after 40 mins and it had dropped to 156/90. I found it to be quite concerning as I had had it measured at the GP's last summer and it was 135/85. They didn't seem overly concerned and put it down to "white coat syndrome" which is apparently a common phenomenon for those on hospital visits, and wrote a note to the GP just to be on the safe side.
Since then I have done some research and the first thing I noticed is that pred can induce hypertension - it's listed right there on the little advice sheet as a side effect. I have also discovered that some dietary and general lifestyle changes can make a big difference so I'm working on both of those and trying to be a bit more active that I have been over the last few months. I'm also measuring my own BP now on a daily basis and I notice fluctuations depending (apparently) on the time of day. For example, yesterday afternoon I measured 166/90 but that was shortly after I had been working in the garden and carrying some big logs around. When I re-measured it in the evening it had gone down to 117/77 which actually made me think there might be something wrong with the machine, so I did it again on the other arm and it was the same.
So what I'm basically trying to say here is that you can make some changes yourself like avoiding potentially stressful situations, and cutting out salt and other processed crap in your diet, like biscuits, crisps, bacon, sausages and other processed meats and stuff like that. It might be an idea to start taking a potassium supplement (or eat two bananas a day) as hypertension is often driven by a build up of sodium in the kidneys, and the potassium can help to rectify that. Also if you can, do a bit more physical exercise, even if it's only going for a walk. It's recommended for those with hypertension to try to do at least 2-3 hours of exercise every week, and a part of that regime should include resistance training of some sort. You don't have to be pumping iron like Arnie but a little bit will help, and it'll also work to maintain bone density which is another big issue when taking pred.
I would be reticent about taking potassium supplements without being monitord by the GP but looking to add potassium through food might be better, There is a high risk of raising potassium too far with supplements and that can be dangerous.
It is, by the way, perfectly normal for your BP to vary with time of day and activity. It falls to its lowest overnight - and if it doesn't, that can be a sign of a problem.
Yes, that's the pattern I'm starting to see. I was so delighted when I measured it last night at 117/77! I'd agree about the K supplement and almost wrote the very same thing re doing it under GP supervision. Personally I take a 50mg tab every evening which is way below the RDA but maybe just enough to give myself a little boost to rebalance the K/Na levels. As suggested, extra bananas are good, as are potatoes and salmon among other things. Tropical fruits are another good source I believe..
I'll do anything to stay off the man made pharmaceuticals if at all possible. Pred is causing me enough trouble without adding something else into the mix.
It was the reading of over 200/110 that alarmed the docs plus the ECG reading reflecting heart muscle changes. This was put down to ‘silent hypertension’ yet was measuring it fairly regularly at home and ok, though not measured for two weeks prior to A&E as I was away from home working.
Could AF show up on an ECG with a similar reading to high BP?
Only if it was happening at the time, it doesn't leave lasting changes. 200/110 would alarm me! If I got anything near that repeatedly it would be 112/999 pdq!
Thanks! Glad I went to A&E - my second visit in over 70 years. Not that I was aware at the time of raised BP. V v interesting experience in London teaching hospital.
I ended up there with a heart rate of 190 or so the week before OH died - interesting being on the other side, I was usually there with him. Been a few times - broken leg skiing many years ago, mangled knee skiing more recently - high season and a bit busy. 3x TGAs (transient global amnesia) but don't remember any of them
6 or 7 for me - the totally torn lateral ligament didn't stop me, I skied the following season but then I had an achilles episode. Then I knew I needed new skis, new boots and a season ticket for the Dolomites is 800-odd euros and just for here was boring when you ski 3x weekly as I was then. Plus many locals gave up - too many tourists who thought they could ski because of carvers and a couple of hours lessons. It became downright dangerous and unenjoyable. One of the orthopods here was standing at the edge of the black piste, almost in the woods, with his 5 year old son when a Croatian skied into him, totally out of control, and it resulted in a broken thumb, luckily that was all! They may be able to get down a piste - don't know their limits though.
Wasn't helped by the darling doctor who'd been awful with him who was on duty that day stopping my medication and telling me to avoid stress!!!! I get flashes of rage when I see her in the hospital. Needless to say I ignored her and got an appointment with a proper cardiology trained person.
Thanks so much for telling me about your experiences. And how there has been a shift in BP since starting Pred. There does appear to be relationship for some. And yes, the ‘white coat syndrome’ is very relevant!I regularly check my BP at home and find it can go highish but then fall again to around 145/75, sometimes lower when resting. I exercise a fair bit, walking my dog about 3-4 miles a day. And since having PMR, following dietary advice. I’ve actually lost weight since being on Pred (coming up to four years). One odd thing is becoming intolerant to alcohol since PMR started. Rheumatologist has no idea why. So although I missed my evening glass of wine at the beginning it’s fine now. So not consuming all those delicious calories !
The intolerance to alcohol thing is interesting. I've been developing a gradual intolerance to alcohol for a number of years now but suspected it was more of a natural progression with age rather than anything to do with PMR. I can still enjoy a beer and maybe even an occasional nip of whisky to go with it but long gone are the days when I could drink a bucketload and then do a full days work the next day..😂 I believe a small amount of alcohol will do no harm whatsoever... has vaso dilatory properties too I think, hmmm....🤔
I completely went off the heavy red wines I used to enjoy and I know a few that happened to, Also the very dry whites - need something hefty in body. That I don't think was age - I was early 50s then. Very picky though - one glass of something decent.
I have white coat syndrome too. My doctor pit me on lisinopril and amlodopine due to my bp being 180/80 . After being on these it still stayed the same at the surgery. One day my doctor asked me if I measured it at home so I got a monitor. At home it was much lower about 120/70.
my diabetic nurse is great and no longer does my blood pressure. Instead I do 3 readings a day for 5 days and she averages it out. It is noted that I have white coat syndrome on my records
Yes, I was prescribed Amlopodine 5mg about 18 months ago after 18 months or so on Prednisolone as my BP was around 150/160 over 80. The doctor wasn't overly concerned and said it was optional so I agreed to give it a try. 5mg made my ankles swell a little but nothing dramatic but actually my blood pressure increased. So they upped it to 10mg but within a few days my legs had swollen up like they had been pumped up with a bicycle pump and were much to painful to bear so then they added in Lefluomide which has a diuretic effect. My BP had gone up to 180/190 over 90 so at that point I concluded it was all counter-productive and stopped it all (apart from the Pred around then about 7-6mg per day). BP has gone back to original levels, much the same as yours, which is still on the high side. Occasionally I get 132/138 readings but mostly 150/160. The diastolic doesn't vary much. I don't eat salty food or anything processed (very little anyway). I even make my own bread, eat porridge with potassium salt and lots of milled linseed (apparently good for BP) and basically behave as well as I can! Hoping that as I reduce (currently at 4.5mg, working on 4mg) my weight will drop and I can get more exercise. I have also started a statin and that might help too. But very wary of blood pressure meds - will see what my doc says next week as am due a review.
Thanks for this. This is really interesting. And NOT what I wanted to necessarily hear! But your experience reflects the complications some have with some drugs. So taken note.
I too have alarmingly high BP readings in any clinical setting. I only have to see a BP monitor for the blood pressure to go into the sky high level of 200+ / 100+ … it’s the old white coat syndrome! When I get home it normalises to 135/70. I do take Atenolol in the morning and Losartin at night which seems to be doing okay. When I was in hospital for renal stones they changed one of the BP meds and put me on Ramipril. I’m afraid it gave me a cough but I think it was a higher dose than your one and they changed it to Losartin.
I do hope it’s all settled down nicely now and the Ramipril and Amlodipine works for you well. ATB. 😊
Not any more. I did to start with but it settled down quite quickly and it's been OK whenever it's been checked at the doctors. I don't think it was as high as yours in the first place I can't remember what it was at the time - it was 6 years ago!
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