Hope you are all doing OK wherever you are ! I am wondering is any or many of you taking long-term Pred for PMR and/or GCA have noted an elevation in your blood pressure -to 'hypertensive' levels. I am nearing my 4th year on Pred and am still (after several 'flares and ups and downs of GCA symptoms) at 17.5mg. I have also recently been prescribed Methotrexate which I seem to be coping with although I have had some intermittent dizziness. Because of the dizziness I started to check my BP more often (I have a machine at home) and noted my systolic levels had increased quite dramatically. A typical reading for me a few months ago was around 130/70 now more like 140/80. Clearly this is not 'good' and I am now considering BP medication. I am however pondering whether it is long term Pred (this is a noted 'side effect') or even the addition of the Methotrexate (which is however ironically often meant to LOWER BP !!??). My 'lifestyle' is reasonably healthy although not 'perfect' in terms of modifications I might make. My major concerns are obviously about using more drugs to cope with the impacts of the others I MUST take - and I may be quite a lot longer on Pred (at this rate) and/or the possible consequences of NOT taking BP lowering meds - there is also some familial evidence of hypertension. I wonder also if there are some meds preferable to others to us already on Pred and with PMR/GCA (there seems to be several varieties of BP drugs available) -any info experiences would be welcome.
Best wishes to you all !
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Rimmy
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Mine has been elevated since half way through my 4 year stint. More like 170 over 85. I take the beta blocker 50 mg Atenolol, an old fashioned remedy that seems to lower it with no discernible side effects except mild palpitations if I forget. I have tried more complex drugs that really don’t suit me ( Ace inhibitors) but I do feel that I have been neglecting this symptom. I am never actually aware that it’s high .Management is left up to me and sometimes I just don’t want to know. Sorry, not a good example. 🙈 Aren’t your readings within the parameters of normal?
Thanks Jane - yes so many aspects of our health to try to keep up with (ha ha !!) and (not) taking reasonably regular BP readings has been for me as well. I have been thinking I need to take into account the fact I am now almost 4 years older than when I first started taking Pred regardless of anything else. It appears my average readings are into 'Stage 1' Hypertension' - apparently of the 'Isolated Systolic' variety which is the most 'common' type for 'over 65's' - I am yet to read if there are significant differences between men and women detailed in the research. I do however dislike the idea of taking ANY more meds but will be realistic if I MUST be ! XX
Me too. Like you I will face another of the heads of this multi- headed dragon, with my mighty sword. I saw off steroid induced diabetes last week. 🙂 Osteoporosis a few weeks back. I found a secret source for 1 mg gastric resistant Pred so I can go down some more. Opthalmologist on Monday for the cataracts etc.eye exam only.
It's sure 'one damn thing after another' with GCA - but it keeps us on our toes - if we are still capable of being 'vertical' (LOL !!) - anyway I'm not giving up yet - let's see what comes next - I'm (almost) 'ready for it' !!!! As you'd be aware when cataracts are fixed it seems 'miraculous' - and although this is not sustained indefinitely and eyesight seems to revert to the 'old' pre-cataract 'normal' - the intervening days are worth it - as quite amazing !
The reason that I am seeing a private consultant for the first time ever is that I was told by my Optician that they do a more bespoke operation that has more chance of obviating the necessity for glasses. That would be amazing. I have heard good things too and there is always diazepam.
As for your comment re number of times to take reading (in another reply) - I usually take mine twice at home. The first one is always slightly higher - the nurse always used to do that when mine was being checked regularly during “Pred” years. Ahh, the good old days when they had time for patients.
Somewhere (think in BHF paperwork) it says sit down quietly for 5 minutes before taking readings - but maybe that’s not true life!
Thanks DL some useful info/charts - which confirms I am kind of 'borderline' - a place I seem to now find myself in quite often with lots of elements of my health - the main thing is not to cross too many of those 'borders' I guess. X
I had high-ish BP when still at work - so was started on meds - stayed on them all through Pred years - didn’t vary much.
After my knee Replacement 2 years it went really low - so came off them.
Last proper annual checkup (what’s happened to them during Covid!) it was borderline... so different GP wanted me back in them - ironically I couldn’t take previous meds (ramipril -ACE) so now on lowest dose of Candasartin - ARB .
I always thought I had 'white coat syndrome' in relation to BP - even when the doctor was not wearing one (LOL!!) Hence the reason for a home BP machine - but it looks very 'white coatish' to me as well - I HATE being 'measured' in almost any way !!
yes for sure - most kits have a bigger cuff if required, or maybe you're making it too tight when you put it on - think you should be able to get a finger (or maybe 2) between the bottom of the cuff and arm before inflated. Sure an ex nurse will put me right!
I can share that I had high bp before I was diagnosed with PMR and out on pred. Lost 30lbs and got off the bp medication altogether. I’ve been on pred 2.5 years now, and haven’t been able to check my bp since Covid (I used to go to the pharmacy that had a machine available to the public).
Recently checked my bp at my friends house and noted it’s up a bit. Not sure if that’s due to my not being as struck with my diet, or genetic influences (my dad was on medication for hypertension for years before he died, my mom is still currently taking medication for about 15 years now).
I do remember my GP putting a 24 hour cuff on me and boy was my reading high, even during the night while at rest. It provided a good overall “picture” of my bp. I also recall my medication was combined with a mild diuretic which my GP mentioned works well to help control hypertension. He also mentioned that salt is no longer the only culprit associated with hypertension, I was told to avoid processed sugar as well. Any reading above 140 (upper number) was considered high (in his opinion), and would possibly warrant starting my medication again accordingly.
I’m thinking of purchasing my own bp machine to keep a closer eye on it. As you’ve recently added a new medication, it causes some suspicion as to why your numbers are going up. I am aware that pred has many side effects, and long term use could result in any combination of them. Most folks don’t get all of them, however continued surveillance of your bp may be a good idea.
Sorry to hear of your new woes. Wishing you all the best on Methotrexate...seems to be a mixed bag as far as outcomes for folks on this forum.
Yes having a BP machine at home is helpful - although I need to calibrate it with the one my GP uses - as who know about parity and 'accuracy' . Still it is really more about 'relativity' for me as I am checking against readings from a wee while ago and they just generally seem to be 'creeping up' .
BP machines today can be purchased that will download your results to your smart phone and can be shared with anyone by email including your health team. Or you can record your readings and share if you do not have smart phone access. They will be able to see the pattern of your recordings and make correct assessment even if your machine readings are a bit different than theirs.
It helps to sit quietly for five minutes before taking BP. I notice if I don't, my BP registers higher. And it is a nice gift to ourselves to just be quiet for five minutes and calmly breathe or read and just relax.
Like many meds, it is best that your doctor advise you because of potential interactions.
Stroke is a concern with any vascular disease. In my case, I have been able to take the smallest doses of BP medication by watching salt, cutting out sugar and not eating refined foods.
Much to my cardiologist's disappointment, I failed all the fancier blood pressure meds as well as all statin drugs. I think my body has not evolved as fast as the pharmaceutical industry. I have however lowered my bp and cholesterol despite being on prednisone by watching what I eat.
Making sure you are getting enough potassium and magnesium may also help.
Love this : 'I failed all the fancier blood pressure meds as well as all statin drugs. I think my body has not evolved as fast as the pharmaceutical industry. ' I suspect I may start to 'fail' also with new meds possibly required to ameliorate the 'other' meds - this is a string I was hoping to avoid. ! Anyway if it is lifestyle change (again) and it may be as my new GP is averse to deluges of drugs (thank heavens) then I may have to brace myself for yet more yearning for what I CAN'T have - and I have had lots of experience with that already !! I'm not sure if it means yet another restrictive diet - I think mine is quite reasonable enough - then maybe I will try more drugs as I am almost over it !! - sorry just a wee 'blah' and I feel better already !
I agree that checking BP several times a day is a good thing when checking whether or not it is high. I did this and it was all over the place - from high to low, with no consistent pattern or relevance to activity. I was put on bendroflumethiazide but that did not seem to have much effect. Fast forward about 10 months, and I was in hospital on 4 hourly obs. They were finding (as I was) that my highest reading was first thing in the morning. Dr came round, looked at the chart and put me on furosemide - an old, cheap diuretic. Instantly, BP was 120/70 and has kept at that level with little variation. Dr said that pred can cause water retention and that different levels throughout the day can lead to quite big changes in BP. Who knew?
Diuretics are a common early intervention for hypertension - but you have to be careful using diuretics in patients on pred. Electrolyte levels need checking regularly to be sure your potassium level isn't too low - pred makes you lose potassium through the kidneys and so do some types of diuretic.
Possibly the disease itself with Large Cell Vasculitis thrown in? Low normal sounds great. I had a high one like that, caused by the pharmacy assistant who likes to thwart, it did keep dropping as I took it 3 x in a row.
I'm on BP meds - but not sure if it is related to the atrial fibrillation which started about the same time as all other PMR symptoms or the pred which I started much later. I wasn't put on BP meds until the a/f was firmly identified for another reason.
Was your BP ever high pre-methotrexate or don't you know? The only effect mtx had on me seemed to be to create or exacerbate adverse effects that I had never had trouble with pred alone previously but are usually ascribed to pred!!
I have had absolutely no problems with bisoprolol and losartan - after a nasty experience with an ACE inhibitor when I developed a major itchy rash! They have a large red warning on my notes now. I think it depends where you are but UK GPs seem to have a fixation with amlodipine as a starter - and it is renowned for its adverse effect of swollen legs. Many patients struggle with it but the doctors persist ...
Re the possible impact of methotrexate - I don't think it is major in relation to my BP which has been kind of creeping up for a wee while. Blood pressure elevation doesn't appear in most information I have found whereas it is often cited as 'lowering blood pressure'. But hard to say of course as we are all individuals. I have not really had much bother so far with taking methotrexate although I was very reluctant to try it. As I mentioned above I've had some slight intermittent dizziness - altho not enough to bother me much - and nothing else I am aware of yet anyway - and soon to take my 4th dose - so nearly a month on it now but only 10mg once a week to see how I'd go.
That touches on something else I have always thought it did - it seemed to increase the frequency of the dizzy spells which eventually turned out to be due to atrial fibrillation followed by bradycardia with occasional very long pauses (up to 7 seconds).
I was prescribed Perindo/Indapa and it worked a charm immediately, lowering bp readings to within “normal” range. After losing the first 15lbs I started getting light headed and reduced dose by half upon direction from GP as bp was low. After losing the next 15lbs I went off the medication altogether (Aug 2019), and took my bp twice weekly for 6 weeks, then once a week.
Sometimes hypertension is lifestyle related and not genetic. Other health woes and medication (like pred) can impact our readings as well. For me, the minor side effects I have from long term pred use (2.5 years), are worth the relief from inflammation due to PMR. Admittedly I would love to get down to 5mg, a “safe” dose so says my GP, and others on this forum.
I think it is quite hard for people to accept that the effort of lifestyle changes can have such a beneficial effect. That includes diet even if it isn't weight loss which IS difficult. OH seems to have gathered something - little steps ...
Differing BP in each arm was a very early indication for me. I went through a phase of pulsing sharp low back pain which can indicate problems with the abdominal Aorta. The doctor rang me to say she was arranging a scan, then silence. The pain’s gone. This was post COVID.
I first noticed high blood pressure on the exercise watch gadget I was wearing. As it was not a Fitbit or Garmin or an IWatch I put it down to the fact it was a cheap one and not working properly. So I used a home blood pressure machine twice a day for two weeks always high 165/75 varying minimally. My pulse rate was always high too. Then I had the nurse do it at the surgery for two weeks high then normal on the third week (on hers not mine) so they left it. I asked the doctor three weeks later after daily monitoring and was put on 25mg Bisproporol and it went down straight away and has stayed stable since. The Dr said it was probably long term steroids as was my pre-diabetic blood sugar. But I am overweight too and that really doesn't help either. I have managed to lower my blood sugar levels slowly with a very low carbs diet.
Thanks and Yes I have been wondering possibly 'long term steroids' although I have luckily not had any blood sugar issues (yet anyway) - although I am 'a little' overweight.
Been on pred 8yrs+. Blood pressure rarely checked until cataract ops last year, when, unsurprisingly it was fairly high. Whenever it is taken in medical setting you have rarely 'rested' before it is done. Hence bit unconcerned at first but had it checked at surgery some time later - highish. Started having nosebleeds and have often had bad headaches and bp stayed high, so now on bp meds. Have recently got home monitor and keeping a record.
Have quite a good diet, not over weight and exercise regularly so have felt most put out! Father had heart disease and mother on bp meds. Can adjust diet a bit more but suspect pred plays a large part. These days we are not exactly free of stress either. I think I am getting towards a grudging acceptance.............
Clearly a tendency to higher BP can be 'familial' - or at least 'run in families'. My very slim and then apparently 'fit' mother (who had undiagnosed/unrecognised GCA for many years in the 70s - many small strokes and lost much of her vision) was found to have very high BP at about the same time. This makes me wonder if high BP can compound the damage GCA can do - especially if either or both are not appropriately treated. Then again if higher BP is related to taking Prednisone there may be some unavoidable elements
Yes, stress can be a big big factor. I've always had high blood pressure: my then doctor said it was inherited as I was otherwise healthy (don't smoke, reasonably exercise fit and good weight). So I've been taking the BP daily medication for 40 years+. And then along came GCA/PMR 3.5 years ago with all that entails. If I use my BP home gadget properly I can self-monitor. It's for absolute sure in my case that in times of stress it shoots right up. Being aware of that means one can/must take anti-stress measures.
I measure myself maybe every few weeks- trying not to be a hypochondriac about it though.
Yes stress is a significant factor - and one which we can only try to avoid or remedy when we can - but really much of it 'descends' upon us (ie. is not necessarily our own 'creation') without any warning and often we have no capacity to easily 'control' its consequences.
Just a thought, Rimmy. Is your thyroid function OK? My BP down to my normal now that my TSH levels are in a good place. Natural thyroid was apparently used to treat hypertension back in the day.
I had BP medication for 7 years before I developed PMR. I had none of the risk factors which doctors usually ask you about but with grandparents, mother, brother and an aunt with a history of high BP it was put down to a genetic factor. However I know stress has elevated it over the years too - caring for elderly relatives, work place (teaching), family crises etc. Some time before I was diagnosed with PMR my home readings were becoming rather low so my GP reduced my dose of Ramipril and after a month or so finally decided I could cut it out altogether, just monitor at home and with the occasional visit to the surgery BP machine. I continued to monitor it and all was well for a while but since I have tapered down to the lower doses of Pred (between 7 mg and 5mg) and was having some difficulty stabilising with them I found the BP readings went up again. Spoke to my GP. I am now sorting out the tapering by using one of the slow methods on here and GP has prescribed the lowest dose of Ramipril again. To be fair I think the stress about it all has played it's part but it is probably not entirely due to that. I have also accepted these things are part of the journey and need to be addressed as I go along.
Well, as stated in a previous post I had some scalp tenderness and tingling which I reported to my GP last week. No other symptoms with those. As stated in last post (and also discussed with GP last week) from 15mg down to 7mg was fine but down to 6mg for a month then 5mg showed increase in aches and stiffness in shoulders, thighs and biceps. I have just done the 5mg increase for a few days. I went from 5mg to 10mg for 6 days. Then 2 days at 9mg, then 2 days at 8 1/2mg and now at 8mg for 2 days. Keeping at eye on it. A little mild ache in morning but nothing much. GP thought maybe 8mg may be ok to keep to for a while then taper slowly say 1/2mg at a time. I am going to try one of the slow tapers on here. At the 10mg for 6 days I noticed the scalp tingling increased but abated when I dropped to 9mg and below. But I can feel it when I know I am anxious or even stressed. Not apparent all the time. Some time feeling nothing at all. The link with all this is giving me confusing messages!
As you know with GCA we are at higher risk of stroke - coupled with the known side effects of Pred contributing we must still be monitored even if BP comes within normal range. 130/70 is within a normal range for many. Yours has risen a marker and In me that would be okay too, even with my history. I can’t comment on Mtx but if it is known to reduce BP then that’s another flag.
There are many BP lowering drugs - beta blockers and ace inhibitors being the first go to usually by GPs.
My journey’s been a long one regards high BP. I can’t take beta blockers any more as they worsened my psoriasis. I used them for over 20 years. I tried every ace inhibitor with nasty side effects. I have a history of nasty side effects with prescribed meds.
I’m 6.7 years GCA/PMR. Professor Dasgupta was not happy it seemed to be taking time for my GP to get me on the right BP medication but he didn’t realise I was reacting to the ace inhibitors.
Eventually I was put on Spironolactone, continued with Bendroflumethazide (water tab) which I’ve taken for many years - it is working with no side effects. Have you tried any water tabs?
That was two years ago and BP has risen again 160/90+ following increase in Pred after a flare. I now take another BP med as well - Half Inderol - it is working. The number of times I’ve been told I am at a risk of stroke is enough to make anyone’s BP shoot up!
I’ve suffered with high BP since the age of 25. I weighed 7.7 stone so not overweight. I clearly didn’t understand it all particularly as I felt okay. It must be in my makeup.
I was referred to a Hospital Consultant who after many test could find no other medical reason for it. Each time I had my monthly BP checks with my GP he used to say I didn’t need the 10mg Propranolol and took me off it. When I had my 3 monthly check at the hospital I was told in no uncertain terms to continue taking it and informing me having a tendency for high BP made me a candidate for an early death - he told me I I wouldn’t have lived past 40 if I hadn’t been diagnosed when I was! He said to regard the 10mg Propranolol as an insurance policy as it would worsen as I got older. He was right. That was 40 years before I got GCA. I’m now 72.
Your doctors will know what’s compatible with your other meds.
What ever you do don’t over check your BP. It can become obsessive. If you’re worried see your doctor or nurse. I check mine when I suspect it’s up. I take the ‘best of three’ readings as advised by GP. I record all three and and it’s been useful info for my GP during COVID.
Some interesting if concerning info about your experience Telian - thanks for sharing it. As yet I have not tried any form - ever- of meds for BP as only relatively recently higher. But when in my 20s I had toxemia when pregnant - and my BP went up then -otherwise relatively 'normal' throughout my life up to this point at 68. I am currently checking and noting my BP before returning to my GP - to get a a general 'picture' over a week or so. I find it all rather annoying so I don't imagine wont get too 'obsessive' about it all - just another (new) aspect of managing my health really.
Possibly the PMR was there but the high BP kept the blood flow high enough to there not be too much problem due to lack of blood flow - lower the BP and the blood doesn't get through.
That's an interesting point when thinking of taking BP meds or not (with borderline readings) - maybe I wouldn't do as well with a lowered BP after all !
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