Swelling hands and feet

[ljbrat61]

Hello all,

I am a first time poster and have a question.

I have had PMR for 3 years now with occasional flare ups when tapering. Currently trying to taper again. Was doing 14 mg of prednisone and Sunday went down to 13mg. Since then my feet, ankles, and hands are swelling.

Could this be from the drop in dosage or just coincidence? Has anyone else become swollen from a 1 mg drop in dosage?

I am so over this whole PMR. I just want my body back. It doesn’t help that I have a torn meniscus in my right knee and disc issues in my lower back. A pain free day would be amazing.

Thanks for the help if anyone has any thoughts.

[Hidden]

I am not the best for advising as I don't have a solution for myself. I too have this hot tingling feeling just in my toes which seems to rear its head as soon as I sit down to relax, like now. I have been putting up with it and it's usually fine when I wake in the morning. I am going to try the Epsom Salts bath tonight and see if that helps. I am sure you will get other replies from the more Experts or others who have found a solution. Good luck. Dorothy 🙍

[Hidden]

I should have said a Epsom Salts Foot bath but I am sure you knew what I meant!!

[GerriMc in reply to Hidden]

A full Epsom salts bath is great too! 👍🏼

[Hidden]

I just wondered where you were and what the weather was like...particularly the humidity. My hands and fingers/thumbs don't like anything above 65 to 70 per cent humidity winter or summer. I had it prior to diagnosis of PMR...the old sausage fingers in a glove. I have found alternating warm and cool water helps. Starting with lovely warm and if it works and reduces swelling I am happy. If not a cool then warm..5 mins or so.

My feet and toes tend to hurt rather than swell enormously. Done warm/cool approach but counter intuitively have hung them off the side of the bed for 10mins.

[Hidden]

Ps...suggest you elevate legs through the day for short periods...🌻

[PMRpro Ambassador]

If you feel you have a lot of pain - are you flaring and not on enough pred? I do have to say - when I'm on the right dose I don't have much pain at all.

If you are going from every day one dose to every day a new dose, yes it could be the change in dose. Many of us try to spread the reduction over longer. This is the version I worked out - challenging your body with the new dose only one day at a time:

healthunlocked.com/pmrgcauk...

Other variations are available.

When you change your pred dose your body has to change a lot of hormonal things - and it can lead to fluid retention for a few days. Reduce your salt intake, feet up. I have similar problems now and again but lots of water to drink and less salt does help. And enough pred!!!

[ljbrat61 in reply to PMRpro]

My dosage had been 14 for s month and went down by 1 mg. I had planned on staying at that for a month and so on.

Right now it’s hard to say with the pain because I am having severe knee and back pain. It’s hard to tell which it is. PMR or other. I just didn’t expect such swelling.

[Daisyharper]

Hi

I too have problems when reducing I started on 15mg 3 years ago, got down to 5mg after 2 years I am currently back

on 8mg and have been for some time now, as I can't put up with the pain, even reducing by .5 I have pain, so at the moment I am sticking with 8mg as I feel fine. I had to have my rings cut off with the swelling so don't get into that situation, leave rings off.. Good Luck

[Marilyn1959]

I had similar problems when trying to taper from starting dose of 15mgs to 12.5mgs. Each time I tried my knees swelled, so I just kept going back to 15mgs. I mentioned to my Rheumy that I knew what type of day I would have by how swollen my knees were in the morning. Rheumy decided to xray knees, even though I was convinced it was PMR / Pred related. Turns out I was wrong. X ray showed osteoarthritis in both knees. I too have disc problems in lower back. Armed with this knowledge I changed to taking pred at nightime and I tried tapering to 13.5mgs instead of 12.5mgs. This worked. Stayed on this for four weeks then tried 1mg taper. Wrong move so went back to 13.5mgs again. Tried 1mg reduction last night suffering for it this morning. So yes 1mg taper proving difficult. Guess my body is telling me 13.5mgs is dosage needed at present.

[ljbrat61]

I may just have to go back to the 14mg and try a slower taper.

[PMRpro Ambassador in reply to ljbrat61]

You really should get your GP to look at your knees - it could be something else.

[ljbrat61 in reply to PMRpro]

My knees are an issue. I have a torn ACL on my right knee and the left hurts due to taking on additional duty with the right being out.

I do also have Osteoarthritis, but it does not normally cause the swelling in my feet and ankkes

[PMRpro Ambassador in reply to ljbrat61]

Was it not well managed at the time? Not sure which it is now but one of my cruciate ligaments is gone, happened when I tore the inner collateral ligament, but causes me no problems at all (touch wood) since the ICL was dealt with exceptionally well at the time. The orthopod said I didn't need the other repaired as I was old! I still skied with it for a time and it wasn't that that stopped me skiing.

This may give some ideas - certainly icing would be a good idea

physio-pedia.com/Anterior_C...

The other fluid retention needs checking out though. However - if you have back problems, they can create knee and ankle problems. A physio visit sounds called for - and preferably a physio with an interest in sports medicine.