I live in Australia. I started with PMR in late August 2021. It was hit with 50mg of Pred and that stopped the excruciating pain it's tracks. Then the hard part started. I initially knocked chunks off the Pred, coming down really fast from 50mg to about 6 mg in three months. I had the odd bout of neck tightness and groin niggles during that quick taper. I've now reduced it to 2.5mg after successive and long periods at each reduction. My crushing fatigues started at lower levels, around 5 to 6 mg.
At these lower levels of Pred, within a day of 0.5 mg reduction I get a "fatigue flare" but no pain at all. Just bog-eyed, brain fogged, "go back to bed", debilitating fatigue. I am fit for nothing, driving is dangerous and I cant operate machinery. (I'm retired and do a lot of wood work n welding etc).
But two days after the last reduction to 2.5gm my normally high BP dropped like a stone within 30 mins, to 104/67. My whole body and brain stopped. All I could do was sit at the table and stare at the wall , taking my BP every 10 mins. It crossed my mind to call an ambulance as no way could I drive. I was "brain defunct". Slowly over an hour, my BP came back up to 118/75. My BP has been high to ridiculously high for nigh on 20 years. I had a heart attack in 2003 and was lucky to survive according to the cardio. I have coronary stent. My GP has had me on max levels of BP medication for years and that has reduced my BP to just under 145-150ish/ 85 - 98ish. I live with that best as I can. I have my own BP machine and even bought a second machine to check against my original machine. The readings were almost identical.
But this sudden drop has me mystified. But even more mysterious is that my BP is staying down at normal acceptable levels around 120/80 with or without BP meds! ( I sometimes forget my BP meds in the evening).
Anyone got any ideas? I see my GP next week. Thanks all.
It can be a sign of low sodium, (salt) or the autoimmune disease itself, it is helpful to drink plenty of water. I imagine you are keeping a record of your blood pressure readings? I think that it would be wise to seek urgent medical investigations, sooner than the GP next week, given your cardiac history. Take along your readings but do go to urgent care preferably with someone to support you. Hopefully it was just an odd blip with a simple explanation. Be cautious though. Let us know how you get on. It sounds alarming.
Don't the adrenal glands play a role in governing blood pressure? You have reduced your pred dosage a lot in a year. Maybe you should investigate your cortisol levels?
Hello, BrunswickV8. To reduce Pred from 50mg to 6mg in only three months was way, way too fast. You mention that from that dose you have reduced Pred with long periods between each reduction. I, and maybe many others here would call a long period at least one month. You haven't been giving the medication a chance to sufficiently dampen down the inflammation in your body between one reduction to the next: instead you are topping it up.
After reading your post again I'm jumping to your recent symptoms of very low blood pressure, 'crushing fatigue ' and a feeling of your body shutting down.
The symptoms you've experienced, e.g. indicate adrenal problems that should not be ignored and without wishing to alarm you I urge you to seek professional advice as soon as possible. No ifs-no buts. Better safe than sorry.
They did start at 50mg for PMR so the drop from 50 to 15mg was fine and a correct action since 50mg was far too high for PMR, it is a GCA dose. I'd say that down to 6 was also OK if it caused no problems. From 6 to 2.3 has been super-slow - problems have only happened now.
Correct. I've always had a few days bad fatigue reaction to each reduction after 6.0 mg but nothing like this drop in BP. I had this thought that I was gonna die but it rose from the brink just as I was picking up the phone to call an ambulance. I'm thinking that PMR Pro's thoughts of adrenal insufficiency may be the answer. I've been "acceptable" ever since this incident but having said that, I never have had totally brilliant days since I got below 6.0 mg. I always carry that tired edge around with me on even my good days. I think my adrenals are stuttering back to life. I'm trying hard to stay at 2.5 but I feel may have to go back up to 3.0 at least. Thank you all. This forum has helped me in so many ways. You're family.👍
I'd say a combination of the much lower pred dose - pred raises BP - and actual adrenal insufficiency at this level of pred - low BP is a symptom of adrenal insufficiency.
Sitting at the table wasn't the best idea - lie down to improve blood flow to the brain, That's what the body achieves when you faint.
Surprised you feel THAT bad at 104/67 - mine is persistently that at present, with odd excursions down to . I'm surprised as I am on tocilizumab/Actemra which is supposed to elevate BP. However, my pred dose is down to 10 from 19 a few months ago. Maybe one balances the other!
I'm on Olmesartan and Amplodipine at max dosage to reduce my BP, been on them for years. But since this low BP event even if I miss a dose my BP doesn't increase like it used to. It's very contrary, which is what mystifies me. It seems to me that my adrenals are tryin had to keep up but they're failing when I need them - like when my BP falls suddenly. Hmmm,,,,,a full on adrenal crisis is not good if ever something really bad happens.
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