Pred and fluid retention

[Hulotsholiday]

Still on the PMR journey which started 2015, 2017 steroid treatment started. Bit bumpy and set back in Nov. 2023 after covid booster. Was down to 5mg but huge flare and had to start again. Currently at 9.5mg and hoping to reduce slowly. Diagnosed with a fib in August 2023 and taking Apixabin as anticoagulant. Also some arrhythmia issues which are unclear. Awaiting cardiac follow up following new af dx, already 2 months overdue and unlikely within next couple of months.

I try to manage my issues with little support so advice re this would be welcome. Over the last few weeks I’ve noticed ankle swelling at end of day. Both legs and today I noticed feet and toes are puffy. Urine is darker than I think it should be in day, but light coloured t night. I don’t think I’m learning fluids as well as before. Wearing every two hours through night and ankles normal in morning. Any thoughts as to whether this is pred related or should I be thinking cardiac function? Thanks.

[PMRpro Ambassador]

I have been nagged at about puffy ankles from everyone except cardiology, should wear compression socks they said. In your dreams, no chance of getting them on on my own! And in January I had an ablation for atrial fibrillation that I have had ever since PMR started, and which worsened a lot after the bivalent Covid jab. Since the ablation - skinny feet, just like they used to be. I'd be asking for cardiovascular input relating to the a/f.

However - usually they don't worry too much about puffy ankles that go down overnight.

[Hulotsholiday in reply to PMRpro]

Thanks PMRPro. I think we have some similarities in conditions…but you’re further down a potential route for treatment and management. I’ll query with cardio when I get the follow up. I’m not sure how much pred affects fluid retention, given I’ve had no apparent issues until very recently. I’d suspect cardio function is a bit below par as it tries to resolve af, brady and tachy episodes occasionally concurrently! It helps to have some understanding and be best placed to ask the right questions. Thank you.

[PMRpro Ambassador in reply to Hulotsholiday]

I can't believe the difference - and I suspect the poor cardiovascular performance was being underestimated. I wish I had complained a LOT more. Don't underplay things.

[SnazzyD]

Whilst Pred tends to make you retain sodium and predispose you to fluid retention, your cardiac history suggests you should seek advice there before blaming Pred. Reducing salt you can do in the meantime.

[Hulotsholiday in reply to SnazzyD]

Thanks Snazzy. I’m not blamng pred… I just want to understand better so I can ask the right questions. Despite some unwelcome side effects from pred, I’m truly grateful for the way it’s helped manage PMR. I know there are no other options and I agree that the latest symptoms are more likely to be cardio related. I’m looking at salt intake and there may be some room to reduce which will help. Thanks again.

[PMRpro Ambassador in reply to Hulotsholiday]

I don't use salt, don't eat processed foods - still got puffy ankles before the ablation ...

[SnazzyD in reply to Hulotsholiday]

Sorry, I didn’t mean it how it might have read off the page. It took a few days for fluid retention to reside when I cut down salt. I found I had to watch added salt in sauces, condiments, cured meats, packeted snacks, tinned food etc. Saying that, when my adrenal glands weren’t working I had to add in a bit of salt by using the types of food above because with that, the opposite happens and sodium goes down and potassium can go up.

[PMRpro Ambassador in reply to SnazzyD]

I will admit - a few days of eating out resulted in footballs for feet!

[Hulotsholiday in reply to SnazzyD]

No worries😀. Tbh it’s years since I checked pred side effects and water retention wasn’t one I was aware of. I don’t go off to the quack every five minutes but I realise that sometimes there are symptoms that warrant attention. I’m inclined to ignore in the belief they’ll go away! I need to err on the side of sensible ( which doesn’t fit well) when it comes to managing health.

I mostly cook from scratch, buying organic meat online, and try to be aware of the chemicals etc in food. I do have a weakness for blue cheese dressing on avocado which I may have to knock off. I’ll run a check for a few days on everything including sauce, tinned tomatoes, etc and see what surprises pop up! I’m going to be hitting the adrenal thing later too. Went through it last year when I got below 5mg and it was awful as they slowly kicked in. I’d just reached a better sense of function in November when I had the covid booster and a huge flare kicked off and I was back to square one. The pred probably isn’t helping the cardiac issues either but as there’s no other option, so be it. I’m still here and too old to die young!

[PMRpro Ambassador in reply to Hulotsholiday]

What's wrong with avocado and blue cheese? Unfortunately the village shop is closed on Sundays or I would nip up and fetch some gorgonzola and mascarpone cheese (comes ready made if you aren't familiar with it) which makes an instant sauce when warmed, officially with a bit of butter but not really necessary. The avocado is in the fridge ...

[Hulotsholiday in reply to PMRpro]

I use Roquefort, Gorgonzola or St Augur with creme fraiche. I thought the salt content of the cheese might be high…yippeeeee. Maybe not!