fluid build up

[Shaza123]

morning everyone ,just wondering if anyone else finds they have fluid build up in their feet ,ankles and legs after sitting for a while. I first noticed this whilst on a bus trip but now it’s happening on a daily basis. This is really worrying me. I am also finding I get absolutely exhausted after doing so little these days. Any advice would be appreciated thank you.

[123-go]

Hello, Shaza123. I see that you asked this question a couple of months ago and that you received a number of replies with suggestions on how to relieve your problem. If you’ve acted on any of the suggestions and haven’t had any relief then it’s time to consult your GP. I know it’s difficult at the present time to get an appointment but you are clearly concerned and must stress this when you speak to the receptionist. If you are told that there are no appointments available ask to be put through to the practice manager and explain your concerns to him/her. Stand your ground and insist that you need an appointment as soon as possible.

It would a great help to responders if you told us what dose of prednisolone you started on, a timeline of your reductions and what dose you are taking now.

Take care.

[Gossiplady in reply to 123-go]

hi Shaza! I too have problems with fluid build up in my ankle and lower leg. I am now down on low dosage, around 2.50 , and find it is improving. P,S. please note everyone who reads these comments, I was a no space but used a comma to hopefully help people to read my notes. Hurray! I had an email today from HU saying they have cleared the problem, but please check. Wonderful!

[DorsetLady PMRGCAuk volunteer]

You did ask similar question about 3 weeks ago, and most replies seem to indicate it might be the steroids and gave advice.

If if has got worse, and as you are obviously concerned about it, think you need to speak to your GP, although I realise that may not be as easy as it should be.

[Shaza123 in reply to DorsetLady]

hi Dorset ladie thank you for your reply. I managed to see the doctor this morning and my BP was 189 / 63 I showed her the picture I’d taken of my feet and ankles last night and she has put me on a water pill and reduced my amolodpine to 5 mg from 10. She wants me to have a blood test for my hart next week due to my shortness of breath on exercise ie walking up and down stairs and X-ray for the pelvic pain I Have. I started on 50 mg last September and now on 14 mg. Feel like I’m going backwards .

[DorsetLady PMRGCAuk volunteer in reply to Shaza123]

BP is a bit odd - the Systolic number is very high- needs to be sorted, hopefully the water pill will help. Please let us know how you get on with blood tests etc next week.

[PMRpro Ambassador in reply to DorsetLady]

It is the sort of BP older patients develop, only systolic is raised and the diastolic is probably so low because of the amlodipine, The is also a pred interaction

"Prednisone may reduce the effects of amlodipine in lowering blood pressure. The interaction is most likely to occur when prednisone is used for more than a week, since prolonged use can cause sodium and water retention."

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I was a bit flummoxed by the difference in both…one high, one low…. mine is usually more in tandem, as per charts. But as we all know charts aren’t real people! 😳

[PMRpro Ambassador in reply to DorsetLady]

We've been talking about this isolated systolic hypertension the last few days - was it Rimmy????

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Ah ha -for some reason I neglected to save post -must have been distracted -will have a read now -ta 😳

[Missus835 in reply to PMRpro]

Had the pleasure of making a trip to our ER the other day (in fact two ER's), mainly because 60 mg. just starting to once again relieve the pain of the "GCA" and I had been having pains in the head and between shoulders blades and also esophageal spasms the two nights previous (which were scary). First ER, took BP which was a little elevated but that could be normal under the circumstances. Second ER, BP had jumped to 169/90 which took me by surprise, because I'd never seen it that high. Never did get to see anyone that day after trying for 8 hours. Just wondering if the new dose of Pred is causing me to retain fluid. I use very little salt. I notice no swelling in legs or feet, but hands have been very puffy and and stiff the last few days. Of course, talking with GP (who's on vacay) and Rheumie is, I'm pretty sure, the "god" of all rheumatologists (even to get the nursing station to e-mail her a phone message).

[PMRpro Ambassador in reply to Missus835]

How many times did they take it? I find the first can be high - repeating it finds it lowers and becomes stable. No idea why. And we are told to take 3 readings any time. Have you got your own BP cuff? We'd had one for ages and after a cardiologist panicked at my BP at one appointment I subsequently took it about 4 times as day for weeks - NEVER above 120/70! Even I suffer from white coat syndrome!

[Missus835 in reply to PMRpro]

They only took it once Pro. I did have my own cuff at home, but it was always normal, so I took the cuff back (needed the money). I believe I also suffer from "white coat" syndrome. Thanks, I may invest again.

[Shaza123 in reply to DorsetLady]

will do thank you

[SnazzyD]

I had to wear class 1 support stockings throughout and travel was a killer. Have a read of the replies to your previous post and see if there is anything different you want to know. For reassurance you might want to chat to your GP in case there are electrolyte, renal or cardiac issues, but it is very common with Pred. I had to cut down salt until well under 10mg.

[PMRpro Ambassador]

A very likely cause of both symptoms is cardiac in origin and you need to discuss it with your GP. I had it with PMR long before pred, especially if it was hot, so not always pred but it can contribute. But any form of breathlessness needs to be investigated.

[tempusfugi]

Just to add to this debate, I am becoming completely confused about my swollen legs and ankles but, mainly my knees which seem to be getting bigger by the day. I did comment on your last post about this, Shaza123, but have kinda tried to ignore this since then. I've always had fat knees😒 but since being on Pred, they are definitely becoming fatter.

I know my BP has increased too, my knees are painful at the back and at times my ankles feel sore, especially at night. So now I'm muddled with oedema, synovial fluid and recently I read something about calcium crystals in the knees, connected to an under active thyroid, which I have. I'm now wondering if I have too much calcium in my blood and am backing off taking the Calci-D tablets.

My Rheumie recently dismissed my concerns saying it was all down to the steroids. Fair enough, but I do feel worried about any consequences. Should I ask for a blood test to check calcium levels or do I need to be taking water tablets? Looks like I need to consult my medical centre yet again. Am tapering to 8.5 mg at the moment.

[PMRpro Ambassador in reply to tempusfugi]

jinasc developed psuedo-gout which is due to calcium crystals rather than uric acid crystals but the effect is the same. Hers was due to too much calcium - it also lead to the formation of sludge in the gall bladder.

[tempusfugi in reply to PMRpro]

Thanks PMRpro. I do vaguely remember jinasc talking to me about pseudo-gout. Will get calcium levels checked out. Seems neverending and I suppose it probably is, in a way...

[PMRpro Ambassador in reply to tempusfugi]

My problem with calcium was grit in the urine that caused cystitis - no supplements, almost no cystitis