Hi I’m wondering if any of you have swollen feet & ankles since contacting this awful condition & taking the equally awful Prednisolone.

I have had this condition since last August & even though the swelling goes down after being in bed at night, shortly after starting my day the swelling comes back again. I’m also wondering if the swelling will be temporary as I’m now down to 7mg & decreasing .5mg per month or permanent, which fills me with horror.

[Sufferinginsilence]

Hello Hullcitysupporter, I am very new to this forum so not an expert by any means. But yes, I do suffer from swollen feet and ankles and it has got worse on the steroids. I have high blood pressure and one of my medications always made my feet susceptible to swelling but now I wake up in the morning with puffy feet and toes, a new symptom! Many of my original shoes/sandals won't fit me any more. Hoping it will all get back to normal once my dose reduces a bit.

[PMRpro Ambassador]

Whilst I will agree that PMR is awful - but there are far worse things in comparison which have very similar effects on our lives - I don't agree that pred is equally awful. I had 5 years of PMR without pred - pred is a very close and valued friend albeit on that isn't always easy to get on with,

Yes, swollen feet and hands may happen if you have something called RS3PE syndrome is part of your particular version of PMR. It is also treated with pred but can reappear as you get to lower doses. I, too, had to buy new shoes, a good European size bigger than usual, because my usual shoes were too small. Once I was on pred it did improve over time.

However - not everything can be blamed on PMR and pred so you should speak to your GP. I had a period of swollen ankles some years ago which persisted even after an atrial fibrillation problem was sorted out fairly well. I went to a local physio about something else and he suggest we try manual lymph drainage. He did a single session, concentrating on the worse side. Within a few days both legs had returned to normal and I have had no recurrence.

[Stellamavis]

Hi HullcitysupporterI too have really puffy ankles from being on steroids since 2015 starting on a dose of 10mgs for PMR but since April 2021 have now been on 40 but lowering and now at 20 as being treated for GCA, the puffiness has subsided when elevating legs on 2 pillows at night but upon getting up it is back after standing only for a few minutes..my ankles look like they have ring donuts wrapped around them 😀 so not a good look ☹️ When I mentioned it to GP he wasn’t concerned but I am as I’ve also experienced fast palpitations when legs are raised so have stopped elevating on pillows and purchased a foot massage and leg muscle stimulator machine which I use at night..my legs feel better for it but the puffiness is not going away anytime soon..also spoke to a different Gp and told of the palpitations and she said she would recommend a Trace..but still not heard as of yet..

[piglette]

I have swollen ankles and feet. It started in my left ankle soon after starting pred and is now in both legs. I understand it is fluid retention. I have tried all sorts of things to help, including massage and lymphatic drainage. A rheumatologist said I should expect that with pred!

[PMRpro Ambassador in reply to piglette]

That's a bit defeatist!!! I don't have a problem any more.

[piglette in reply to PMRpro]

I have been lent a special stool by the NHS to rest my feet on which is nice! It also acts as a spare chair for friends.

[tangocharlie]

I get this and it seems to be linked to reducing steroids - the problem goes away at higher doses. Doctors are stumped. Water tablets don't do anything, nor do support stockings. It does improve a bit overnight so elevating the legs helps. It must be something autoimmune as it is steroid-responsive, PMR or something else on top of PMR. I also get rashes on my lower legs when on low-dose steroids so am being referred to dermatology for an opinion

[Hidden]

I have puffiness in one ankle. I manage it by:- Having blocks under the foot of the bed so that the fluid drains toward the heart as I rest.

- When sitting, I try to have my feet up rather than resting on the floor. If this is not possible, for example when teaching, I try to do ankle exercises. I either circle my foot changing direction regularly or I pretend that I have a pen in the tip of my big toe and 'write' the alphabet using my foot.

- I try to avoid standing still for long periods of time but make sure that I get plenty of exercise as muscular movement helps the lymphatic drainage.

- I eat very little salt, for example I never add it to food when I'm cooking or at the table, as this promotes fluid retention.

Like PMRPro, I contest the 'awfulness' of both PMR and prednisolone. I am pleased that if I have to have something (and, obviously, I'd rather not!) it is something benign like PMR rather than the bowel cancer which is slowly killing a neighbour. Prednisolone has meant that I have been able to manage my pain, return to a job that I love and carry on with my life rather than sitting, whimpering, on the sofa. It's no picnic but it could be a helluva lot worse.

[Hidden in reply to Hidden]

Please don’t think I’m a wimp for mentioning the fact that I am puzzled as to why I have swollen feet & ankles. This condition is such a complex one & the side effects of the prednisolone are many & unfortunately the medical profession seem to be at a loss to know the origins of it. I have had both kidney cancer & skin cancer in the past & even then didn’t sit whimpering on the sofa! I have been through enough in my life to know it could have been much worse.

[Hidden in reply to Hidden]

I certainly don't think that you're a wimp for mentioning your swollen feet and ankles. I'm terribly vain and am devastated by my puffy ankle as my ankles and wrists were among the few parts of my body that I felt looked okay in the past so I feel your anguish!

Another thing which, I think, helps is yoga. In the last week, I've returned to my yoga classes, rather than doing YouTube practice, and have noticed a marked decrease in puffiness. I Imagine that pilates, with a skilled instructor, could have the same effect.

[RoadTrip]

I am very sensitive to the amount of salt in my diet, too much and I get puffy ankles and feet, having been on pred. Previously was prone to puffy ankles but only when very hot. I am on a very low salt diet, no processed foods, no salt added in cooking, limited cheese which seems to work.

[nuigini]

Agree with PMRpro, not everything can be blamed on prednisone, although I admit it can often be the culprit.

I've had "thick" ankles all my life; got lots of ankle and foot swelling after starting prednisone and wore compression stockings for years to control it during the day. Diagnosed with celiac disease three years ago and after going GF I had real ankles again, thinner than in my entire life. What a relief to get rid of those bloody compression stockings.

A couple of months ago the swelling returned. Low and behold my blood pressure is way too high. Now getting that under control and the swelling is much less.

I think there are so many possible causes, it's trial and error figuring it out.

[Sparky20]

Hi I had a moon face with prednisolone I was on 20mg now i am about to come off them i take 1mg they have now said the preds were not needed as i do not have PMR so it has taken them 8 months to tell me I have impingement in both shoulders causing the pain, now waiting to see some one in orthopaedics. .

[Beevbops]

Hi HullcitysupporterWell I think I must have been lucky with Prednisolone because I didn't get any side effects apart from weight gain and later found out my bone density was down the pan. I hope you get your legs and ankles sorted...but there could well be another reason for it.

All the best

Beevbops