I'm not 'here' often these days as I seemed to reach some kind of plateau after about 6 years - after sitting on about 10mg of Pred for the last two or so. Apart from some intermittent fatigue I was feeling generally better with less of the 'blobby fatigue 'which was generally my main problem with PMR/GCA for nearly the whole duration.
About 6 months ago on my own volition - no doctor has ever helped me much with complexities - I began a slow titration and got down to 9mg then 8.5mg which I am now still on. BUT coincidentally with this reduction I began to experience bouts of lightheadedness and dizziness which have recently become worse. So I after many years I resumed taking my own BP and looking for any connection between that and my dizzy spells and there seems to be a clear relationship (well according to my readings anyway) with having low diastolic readings around the time of dizzy symptoms. It was only recently realised this was a connection - as most of the time my diastolic is only in the mid-high 50s while my systolic around 130 or so. (Some research suggests the difference between the two shouldn't be more than about 60 points).
Reading more about low diastolic BP I realise it is now regarded as a serious risk for heart problems/failure as much as generally having a high systolic pressure is. BUT diastolic has far fewer treatments/meds despite this. Interesting however that one of the treatments is corticosteroid based - highlighting that inadvertently when we take less Pred any susceptibility to such issues is ENHANCED !!
Not expecting anyone has a straightforward 'solution' to this problem of trying to get healthy levels of both systolic and diastolic pressures simultaneously but interested to know if anybody has had a similar experience. But I think regardless this is probably worth being aware of as a potentially significant issue for some people as we reducing our pred doses.
I'm interested in any comments about this issue !?
Many thanks
Rimmy
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Rimmy
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My first thought is that it could be due to the beginnings of the battle to regain adrenal function. For some 8.5mg appears low enough for this to reveal itself. For me it was somewhere between 8 and 7mg. The problem was that the dose was too low to cover my body’s needs all the time but still a bit too high for the lack of Pred to properly trigger the brain to tell the adrenal glands to start making cortisol. Symptoms are many and varied but low BP is one of them along with feeling dog tired and weak. A short trip to the local supermarket was enough to make me feel shakey and dizzy. If it is this, there’s not a lot you can do other than slowly reduce low enough (for me, around 5mg) for that feedback loop to start working more reliably. The trouble is that one can feel a lot worse through this dosing no-man’s-land but you can hurry it. I spent months feeling pretty rubbish and having to be careful when I stood up.
Saying that, low BP has many other causes so it is worth trying to see a doctor in order to inform what to do about it. When you do have a spell try to check your heart rhythm via your pulse to see if any obvious arrhythmia is happening. Also, see if there are times when it is worse or better.
Thanks you make some very interesting points - I hadn't actually thought my Pred was so low that I would be experiencing adrenal insufficiency (yet). But I am a tall solid woman of 82kg and that dosage might put me in that category for that ratio alone I am thinking. I had dug further into the low diastolic issue which is fascinating if horrid as it can be part of a symptom of heart problems - known as 'Heart Failure with Preserved Ejection Fraction (HFpEF)' which are becoming increasingly common. I had my heart checked last year and all was fine then but things can alter quite fast so I will consider more cardiac tests if the GP thinks I should have them.
Hi again Snazzy I just put my Pred dose back up to 10mg after my BP diastolic returned to s more normal level - see below what I said about that to PMRpro. I hadn't been thinking adrenal insufficiency as thought I wasn't close enough to that point on 8.5mg - so I appreciate your helpful comments as I feel MUCH better - thanks again !
Good you’ve found a ‘simple’ explanation. If you are someone who doesn’t absorb as much of the Pred or you are not little, 8.5mg may be on the low side and in effect you may be below 8.5mg. If this is the way low adrenal function is going to take you, you need to reduce very slowly. Unfortunately there is no bypassing this stage because a perpetual lack of Pred is the only thing that will make your body realise it needs to work now. If I got the wobblies and really couldn’t afford to have them eg, travelling, a couple of mg usually helped really well. However, it’s not a good habit on a frequent basis. I had to adjust my life down in order to cope with the lower Pred level. It all comes as a bit of a disappointment if one is lead to believe that once under 10mg it’s all great from here. Another thing to bear in mind is that low adrenal function can lower your sodium so if you’ve been keeping that low, now may be the time to introduce a bit.
Yes thanks Snazzy I have upped my salt level but I am now wondering what do I do about the fact my systolic level is now a bit on the high side 140s and sometimes higher as it went up with the extra Pred as well. It doesn't appear that it is possible to control systolic and diastolic pressure separately - and certainly despite the fact that diastolic heart failure is starting to surpass that caused by systolic high BP - not much research I can find anyway ! Nothing is ever 'simple' really ha ha !!
I don't think that 140 is the end of the world - if your diastolic is liveable with. Mine is consistently 60-65 and it seems that is considered too low on treatment but my systolic is also low at 110-115. I'd rather it were a bit higher - I might feel more energetic but at present I'm trying to manage the arrythmia which is infinitely more annoying! I will finally see the cardio next week.
Thanks PMRpro - no I hadn't seen the 'Unsolved problem' article - clearly it is exactly the issue I am concerned about. With the ageing of populations (and they mention this too) this 'problem' will obviously become 'bigger' over time - so maybe more research will happen. Yes agree not very worried about my systolic being in the 140s - tho sometimes higher of course. I have a grandchild in NICU delivered 2 months early by emergency C-section a month ago and still on ventilators and stuck with (horrid but necessary) numerous tubes. drains etc and this has been a huge stress of course so suspect my BP is presently rather berserk anyway. But the story about your friend falling down stairs and the end result has made me feel even more cautious. I had a bout of unexplained dizziness 6 months ago and went to ER who told me it wasn't anything obvious and likely BPPV - it did dissipate in a few weeks but I am in retrospect concerned it was something similar to this but was before I started Pred reductions. We are complex critters - humans so will just have to try to balance everything out - I am only (almost) 71 and want to be around a decade more at least ha ha !! Hope you are currently well !
Well quite - we are similar ages and I don't really want to shuffle off this mortal coil just yet!
I had one of those NICU babies 43 years ago exactly - her birthday at the weekend. Also 8+ weeks early but we were quite lucky in that she only need CPAP for a few days and a head box a bit longer. 1300g, I had pre-eclampsia so it was a bit dodgy for us both. She was home after 2 months when she reached 2000g. Little sis was also a premmie - 1090g but just 5 weeks early and otherwise fine. It's foul at the time - but they catch up /
Interesting - I also had pre-eclampsia with first babe born in1975 (father of current baby in NICU prem with hydrops) - and with my 2nd child I had pre-eclampsia as well. Funny they put me in bed a month beforehand with eldest - other child in 1978 in a rural NZ 'maternity home' they didn't bother with any of that and I had a much better overall experience - thing was though I never knew or was told by anyone how serious it all might become - just sometimes 'ignorance can be bliss' - but not a 'reliable' premise for anything of course.
I spent a month in bed both times - though the Scottish experience was rather better than the German one!! Ninewells NICU was ahead of its time - the Germans were still in the age of stick them in a quiet corner and let them grow and were horrified at me with my hands in the incubator stroking her! Told me I couldn't have her home until she'd reached 3kg - at least, until they found our insurance only paid for 6 weeks inpatient time. All of a sudden it was "well of course you do have experience ..."
Fingers crossed the babe is OK - all the very best, Do they know the cause?
Thankyou we are staying 'positive' although some big 'ups and downs' with fluid on her lungs returning. In NICU the tech looks amazing although the poor wee thing is stuck with so many tubes it's quite frightening. They say the cause is a single gene mutation - 'Noonan's Syndrome' - not picked up in any scans/tests - a normal pregnancy until 33 weeks - a huge shock to us all.
Are there any other signs/symptoms that coincide with the dizziness? I had a spell of reacting badly to being in a hot shop during the winter, feeling hot and sweaty and faint.
Years ago when I was having these dizzy spells they did a 24 hour Holter BP check. It just so happened it was measuring when I had one - they measure every 1/2 hour in the day, hourly at night. All the other levels were fine, this one had plunged. But they had no idea why - no cardiac reading to go with it. Later I was diagnosed with atrial fibrillation and when it was treated, these spells were gone. (The a/f is due to the autoimmune part of PMR - and the bivalent Covid jab has caused problems with it.)
Then I started having very mild dizziness, like a wave rolling over for a few seconds and gone. Again, they couldn't identify anything - but they never looked at anything while one happened, Then I fainted and hit my head at home and had a TGA at the same time - I had a history! In hospital I was agitated and they gave me an infusion of diazepam to calm me - trouble is I have a severe reaction to it and had a massive atrial fibrillation episode. I was attached to an ECG monitor - which identified that not only was I tachycardic but was having bradycardias every so often and sometimes pauses in heart beat of up to 7 seconds! BP plunged, I was dizzy, not surprisingly. Fine when I was sitting - not so fine when standing. I was immediately given a pacemaker - all sorted.
Thanks PMRpro - that is quite a conglomeration of issues ! What I did last night to check to see if Snazzy's suggestion of adrenal insufficiency could be the issue - I took and extra 2mg before bedtime. Took my BP first thing when I woke up and it had jumped up very quickly with my diastolic being in the high 70s from high 50s to low 60s !! problem is of course my systolic went up as well from 120s/30s to mid140s. Kind of exemplifies the problem of trying to deal with these levels 'separately'. At least now I am not perpetually dizzy - it was getting bad !!
A very sensible bit of deduction! And if you just took 1mg more? And a sensible move if I may say so - dizziness and normal life don't mix. Especially if stairs are involved. You can do a lot of damage if you take dizzy at the top of stairs - a close friend is now paraplegic as a result, dependent on 24/7 care/
Sounds very like your adrenals are making themselves known. I had the dizziness and fainted several times even due to my blood pressure dropping. The lowest was 54/45. I went through months of tests for heart problems and also a tilt test. No one listened when I suggested the adrenals. In the end they decided it was just me!
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