In a quandary!

[Sandybo]

Hi everyone, it’s a very long time since I last posted. I have managed to get down to 4.5mg Pred for my PMRGCA with a few stresses on the way when I had to pause for a while. My iron levels were down a bit recently so my GP put me on 200mg Ferrous Sulfate 1 daily and after a few weeks my iron levels were ok again. For the last 3-4 weeks I’ve been experiencing flutterings in my chest area which I guessed must be palpitations. I could not relate them to anything, they were rarely in the morning, usually afternoon and evening and not continuously. Last Saturday there were some worse episodes that almost made me think my heart was racing with blips now and then, this also was not continuous but came in waves. I stopped my iron tablets thinking it might be them and as I knew my iron levels were ok I felt safe in doing that. I saw my GP on Monday ( he said I could stop the FS as my iron levels are good again) and he organised an ECG which I had yesterday and even though I had some episodes while being recorded the results were absolutely fine, my GP is now arranging for me to have a 48 hour monitor. Apart from all this I’m feeling more tired of late and am wondering if having got down to 4.5 preds now just starting 4mg (all the reducing has been done by the DSNS method,) do you think this could possibly have some bearing on the matter? I’m due for another ultrasound endoscopy in 2 weeks time for my duodenal adenoma problem for which I’m under 6 monthly surveillance, there’s been no change each time but as they know so little about it I have to continue with surveillance indefinitely, I’m just hoping these new investigations don’t stop me having this next EUS, sorry this is so long, but I’m just wondering if there may be any advice from anyone.

[SheffieldJane]

Has your blood pressure been normal throughout? Mine was consistently raised so I was prescribed Atenolol ( beta blocker). My heart used to skip beats and I would experience palpitations. The Atenolol seems to have dealt with this. I also had the tests you are undergoing.

Your body maybe responding to a lack of Cortisol at your level of Pred. This was confirmed for me by a Synacthen Test.

[Sandybo in reply to SheffieldJane]

Thank you SheffieldJane for your reply, no I haven’t had my blood pressure taken fo a few months so will remedy that when I see my GP again which will be soon.

[PMRpro Ambassador]

All I can say is that I had had palpitations very occasionally right from the early days of PMR symptoms - but never bad enough to do more than mention it to the GP who dismissed it (like everything else) as "your age". They improved once I was on pred and I didn't think about it again until I had a bad drug reaction that triggered 5 or 6 hours of severe atrial fibrillation on 2 consecutive nights, Since then it has been well controlled with medication - and it was then I realised that those episodes I'd had before had been a/f. Last year, about May I think, I realised they were back - as I reduced the pred dose. At 7mg they were there, at 8mg they were better, at 9mg they were gone. Then last autumn I developed a proper flare - and needed 15mg in early October to manage the thigh claudication and aches. Every time I have tried to reduce to 14mg the a/f reappears after a few days. The episodes are not long, maybe an hour or so, and always resolve and I go to sleep - they are nearly always very late evening, after my bedtime. The one occasion I've gone to hospital it had gone by the time I got there!! The cardiologist agrees the a/f is closely linked to the vasculitis and since she can't offer anything better in the way of drugs she says to continue with the pred.

So yes - I think the pred dose COULD have a bearing on the matter!

[Sandybo in reply to PMRpro]

Thank you PMRpro, I am heartened with your reply, do you think I should up my Pred and if so by how much would you suggest. My rheumy has left my reducing Pred up to me, I’ve had to stop for a few weeks from time to time due to stress and carry on when I have dealt with it. I have not had too many episodes today as yet, but have consciously been sipping water a little more often than usual, not sure if that has any bearing on it! Having said that I don’t feel quite well in myself, tired and less energy of late, I guess all part and parcel of whatever it is. Thank you again.

[PMRpro Ambassador in reply to Sandybo]

An arrythmia or fast heart rate can make you feel tired - I can have awful days but luckily not often.

You could try and see if a bit more pred helps and if it does you then need to discuss it with your doctor since most of them will blame the pred! If more pred helps - it wasn't the pred!! Then you have to get it properly diagnosed and managed if possible without having to increase the pred.

[Sandybo in reply to PMRpro]

Thank you again PMRpro, I will keep you posted.