Hello everyone, I suppose I just want to share what's happening with people who understand!
I have been doing a very very slow taper for quite some time and managed to get to my lowest dose yet of 7.5mg pred earlier this month. However, over the last few weeks, I have had a succession of family things happening which have made me feel pretty stressed. I noticed just over a week ago that I was feeling very tender in my shoulders and breastbone which is where my initial symptoms of PMR were back in 2021 and wondered if I was experiencing a bit of a flare-up .
On Friday evening after a relatively uneventful day, I took pretty severe palpitations when I went to bed and my blood pressure was up significantly. I eventually rang the out of hours GP service. When they'd confirmed I didnt have chest pains or shortness of breath, they told me to relax, take deep breaths and go back to bed even though BP was 172/93 (normally 125/70) and heart rate was 104. Anyway, my hubby kept monitoring the results and when the heart rate started to subside, so did the BP and eventually we went back to bed. But next morning, I woke up with a full blown flare up - could hardly move. Shoulders, hips, chest - everywhere - was aching. I took an extra 5mg of pred on Saturday and Sunday night. I'm still having palpitations on and off but not so bad as on Friday night.
I have had one severe bout of atrial fibrillation in 2018 when I had an infection and high temp which thankfully happened in hospital and they were able to deal with it on the spot. I take a beta-blocker since then but this is the first time that I've experienced that feeling of my heart racing again.
I think I'm just a bit anxious now and I'm wondering should I go back down to 7.5mg tonight or stick on the higher dose for another few days to keep the PMR symptoms at bay or are the steroids possibly adding to the palpitations?
I last saw rheumy in March 22 and was due to see him again in six months but still waiting for appointment. I could see my GP but not sure if they would do much as they leave the PMR management to rheumy.
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If I read it correctly the palpitations starts before you increased the Pred, so more likely to be connected to either your flare or adrenals struggling…not the increase. ..and probably also anxiety. How is your BP now?
This link, contains advise on dealing with a flare- so would suggest you need to stay on increased dose for a little longer- and before you reduce.
This is so useful Dorset Lady, thank you! Have just read both posts and it really makes sense. I will stay on the 5mg higher for another few days and then go back to 8mg and try to reduce again. My BP is back to normal thank you. x
It is complicated - I have atrial fibrillation and it tends to be worse during a flare - it was caused by the autoimmune part of PMR damaging the sinus node, the cells that govern heart rate.
There are a few things they suggest online to stop palpitations - something I found recently was keeping a couple of flexible ice packs in the fridge, or actually one in the fridge, one in the freezer. I find placing one across my chest, above bra level I suppose, does often stop an episode. They suggest cold water on your face but that didn't seem to work for me so a tried the coldpack on my face it sort of worked - but putting it on my chest was better. I put the frozen one on top of the merely cold one to lower the temp further. I also use liquid magnesium supplements - as used in the hospital - as soon as an episode starts and that also often helps.
But the best option used to be calling 999 - paramedics carry a 12 lead ECG device so will get evidence of what is going on. 104 isn't bad - my tends to run at 120-ish with occasional spikes higher. It's fine as long as you are sure it is a/fib so it does need to be clarified. My BP goes all over the place - also normal for the situation.
However - a night worrying about it and the accompanying tension can easily cause aches that feel like a flare
Thank you for your advice PMRpro. I always have an ice pack in the freezer so will remember that if it happens again. The GP who rang back suggested sipping iced water and taking long deep breaths.....it did eventually start to go down but maybe an ice pack would have helped faster. It is quite stressful when it happens. I take a magnesium supplement daily but maybe liquid magnesium would be a good thing to keep just in case - I've seen some sprays? Would you say, in your experience, it's not a flare up of PMR but just a result of over tense muscles due to my panic?! I don't want to increase the steroids unnecessarily x
Here, if you start an episode in hospital when you are on monitoring a nurse appears with a dose of magnesium and I keep it at home for the same purpose. It often stops an episode in its tracks - and that is what they usually give you in hospital as an infusion.
It's difficult to say - I'd be inclined to try 5mg extra for a day or two and see if it makes a difference.
Hopefully a blip but I know from experience how unpleasant atrial fibrillation can be. I was fortunate to be successfully treated with an ablation so longer have it as such……
However like you I have just got to 7.5, and have had a lot of stress, and I’ve found occasional palpitations have started up again, though nothing like as bad as previously. I’m putting it down to adrenals having to think about getting going.
As you have a flare too I agree with your plan to stay at 5mg extra for a few days, then drop to 8mg.
Maybe you can call your doctor's office or clinic and ask them if you can increase your dosage. I don't know your location but in the States some clinics don't allow that, they want you to make an appointment and go in because they make more money that way. I am on Prednisone 7.5 mg daily for skin autoimmune imbalance. When my dosage was lowered to 5 mg i had a flare up, I call the clinic they told me to increase my dosage back to 7.5 mg until my next appointment. I have been taking Prednisone for 6 months i dont have and bad side effects so far but i am stressed out taking this medication because of some of the negative things i read online about it. Take care and i hope you feel better.
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