I’ve posted a couple of times recently as I’ve been struggling to get a flare under control. I started a reduction from 8.5 mg to 8 at the end of June. I was ok for almost 3 weeks then had a bad flare. I tried a quick ‘pred burst’ of 13,12,11,10, and 9 for 5 days which didn’t work. I then tried 13.5 reducing over a week to 12.5 then dropped back to 8.5. I was still having issues so have now done 7 days on 10mg which seems to have worked. My question is what to do next? Do I stay at 10 for a while and do a slow taper back to 8.5 or drop tomorrow to 9 and stay there for a bit. I’ve postponed my next local Rheumatology appointment (due the end of this month) until December and have booked a private consultation with Professor Rod Hughes on 19 August to see what advice he can give me. I’m so disappointed as I was doing so well on 8.5. I had hoped to be lower than I am as I’m just coming up to my 4th anniversary with PMR on 20 August. Thank you, Tiggy.
Struggling to get a flare under control. What ne... - PMRGCAuk
Struggling to get a flare under control. What next please?
I'd say that 8.5mg was absolutely your limit so I wouldn't want to go lower than 9mg and then taper slowly again.
Had you done ANYTHING different in that 3 weeks up to the flare? Nice or less nice, had a cold, had bad news? Had a strenuous day out even?
Hi, thanks for your prompt reply. Yes I’ve just looked back in my diary and I had a lot going on during those 3 weeks. I had a week of A fib which worried me (saw GP and had an ECG), a bad UTI for which I needed 2 weeks of antibiotics to get it under control, a hectic weekend away with OH’s family (planned months ago), bathroom refurbishment which went on for 3 weeks. Just typing this I can see that I overdid things!! Life gets in the way sometimes !
It does - but yes, that lot would account for problems. In fact, any single one of them, especially the weekend away with the in-laws, would do it. Some people I know move out for a bathroon refurb!
And the week of afib will have left you feeling pretty rubbish - it did me and mine is paroxysmal so not a full week but several hours at a time.
The A fib was mostly during the night so I didn’t get much quality sleep. The GP suggested I purchase my own EKG monitor called KardiaMobile (from AliveCor £99) which fits in your pocket. I can check my heart rate at any time and if necessary send the results to my GP. Ironically I’ve been ok since I purchased it!
Scared it away!!!! Have you been treated in any way for it?
Not as yet. It comes and goes. My GP said she could put me on the waiting list for a 24 hour holster monitor but said currently the waiting list for one on the NHS was horrendous and I would be better off buying the KardiaMobile. (Being cynical maybe she has shares in the Company!)
Sigh. I'm staying in Italy ...
Has she not even considered putting you on an anticoagulant? How ill do you feel when it sets off? Heart rate?
My resting heart rate is normally in the range 63-65 ( on my Fitbit). When I had the A fib it was around 85 to the upper 90’s but didn’t go over 100. When it sets off I get a bit of a headache and my anxiety levels go sky high which obviously doesn’t help. It seems to gets into irregular rhythms which chop and change. I often get a pause then a surge. The doc told me I have ectopic beats which are normal and nothing to worry about! My dad died at 40 from coronary thrombosis so anything heart related is always a bit of a worry for me and my siblings.
That isn't too bad at all really. If you start breathing funny because of your anxiety that will make you feel far worse so concentrate on breathing slowly. And although those are not concerning heart rates, if you are really scared and feeling panicked, try calling 999 and see if they will come and calm you down. afib doesn't kill you, in that sense it is nothing to worry about, but you really should be on anticoags just in case. Does your GP understand your anxiety with regard to your father?
I think the fact that my father died young from a heart condition is on my records as I know it affected my QRisk score when estimated by the GP a few years ago. I’ve just redone it on the NHS website and it doesn’t make good reading. I’m 74 and have been given a heart age of a healthy 95 year old! I’m a bit overweight and have type 2 diabetes which goes into the algorithm. Something else to worry about!😩😩
All the more reason I would have thought for you to be put on an anticoagulant while waiting. It won't alter the diagnosis but it is protective of clots forming in the bottom of the ventircles and being released into the circulation during the afib episodes which is probably the greatest risk.
Sorry to hear of your difficulties. The PMR yo yo isn’t unusual and better to keep it under control by staying higher for longer than risk reducing too quickly. I was diagnosed with a fib last year by consultant who checked ecg readings on Apple Watch. It’s paroxysmal, so infrequent and I’m awaiting a follow up to see if any other intervention is required. Hopefully not, but I was put onto anticoagulant immediately and for life. One Apixabin a day to reduce risk of stroke or heart attack because of a fib. Could you ask your GP if you need an anticoagulant or query why it hadn’t been recommended? Maybe you take other meds or a condition which make it unsuitable, but at least you’d know why a routine a fib med hasn’t been offered. I agree with PmrPro. Good luck.
Thanks for your response. I’m seeing Prof Rod Hughes in 10 days time. I’ll see what his opinion is on anticoagulants. It’s a flipping minefield isn’t it!
How old are you if you dont mind me asking? My brilliant but now dead cardiologist said that research shows 63 is the age they need to start paroxysmal AF patients on anticoagulants. I was only 52 when the AF began. Now 76 and because of heart 'pauses' which meant I was briefly unconscious, I was given a pacemaker which has an algorithm in it that helps control the AF.
How on earth can that be worked out? The risk is of clots forming in the bottom of the ventricles and that increases the risk for clots and becomes the most common cause of strokes. I'll happily take my anticoags!!
I have paroxysmal afib and ectopic beats. I bought a 2nd hand smart watch on ebay to monitor it. It took months to get a 24 hour halter but my GP prescribed dsily edoxaban (a blood thinner) way before that because afib increases stroke risk. Like yours, my afib tends to manifest at night. I've discovered a few triggers (tonic water is a major one) but my 'pill in the pocket' (bisoprolol + fleconait) usually resolves in within 30 minutes. It's horrible when it happens but they will sort you out. Push your GP for a prescription before your halter gets done.
Tonic water as a possible trigger…that’s interesting and certainly one I wouldn’t have ever thought about. Any idea why? I really enjoy the Fevertree range of tonics and quite often have a small can in the evening. Sharp and refreshing with a chunk of ice. And no, not accompanied by gin!
It's the quinine - apparently a known cardiac stimulant. I too used to enjoy tonic & ice as a soft drink but no more!
At the dose it is limited to???? 83 mg/l is way below therapeutic doses - 10mg or so in a G&T compared to 500-1000 mg in a tablet.
I don't know about the dose - I used to have 2 or 3 tumblers of it on occasions when others were drinking, and would wake up with heart rate of 140. Since I stopped drinking it a year ago I've only had one afib attack
Duh! I didn’t think of that. I thought amount of quinine in I’ve the counts soft drink was minimal. However, I’ve just deleted the cranberry and rhubarb on special from my Sainsbury order tomorrow. I’m 6 months overdue a follow up cardiac referral following the a fib diagnosis, so if I ever get to see the consultant, I’ll ask about this. There’s always something waiting to catch you. Appreciate your input HH.
Agree with PMRpro - stick to 9mg drop... and no rush to start tapering again.. make sure that really is enough.
It might be disappointing, but that's PMR, unfortunately.
Thanks I’ll drop to 9mg tomorrow and let you know how I get on when I see Rod Hughes.
Please do…
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