Do you have Oedema?

I'm really fed up again this morning as my feet and ankles are uncomfortably swollen as they have been for the past few weeks. I am on Fourosemide but it really doesn't seem to be doing anything. I don't always have oedema - it tends to happen more in the summer months for some reason. Usually it at least goes down overnight and then starts up again the following day. This time it just doesn't want to go down at all. I have seen my GP about it and also my consultant had a look at it when I had my check up a few weeks ago. Once I get rid of it I can be fine for months before the next bout, but its the getting rid that seems to be difficult this time.

Do you suffer with oedema? Are you able to get it down and what dose of fourosemide are you on ? My current dose is 40mg first thing in the morning. It was 20mg originally but that did nothing. My doc seems reluctant to prescribe higher than 40mg - is this the same for everyone or just my doc's attitude? He is always very helpful with anything else.

Any and all input from others re oedema and/or mediction or other strategies for dealing with it would be most welcome. Curious as to how common it is with our condition too. Thanks, P :)

22 Replies

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  • Sorry stitch - thought i had already responded to your post a while ago (i must have water on my brain as well as my ankles lol). Just to say thanks for post and don't be sorry that you haven't experienced it - you are better off without it that's for sure! P :)

  • Yes they always ask, but I don't have a problem with it, does it help elevating your feet? Val

  • Val I think I could raise my feet behind my ears and it wouldn't make a jot of difference lol :) (reality is i can hardly raise my feet to put my shoes on - just in case anyone is getting a nightmarish vision of me with feet behind my ears! lol)

  • Good morning Parvati :)

    This usually happens to me when I have an infection and am in hospital :( and also, like you, in the warmer weather. The only thing that helps me is to sit with my feet higher than my heart, but I feel that only distributes the fluid to other places (like my tummy and my hips). Frusemide was prescribed and I've been taking 1 tablet (40mg) every morning for almost three months. However, at my latest checkup I asked whether I could stop taking it - I hate taking any sort of medication - and I was told that I could :)

    I wish I could be more helpful Parvati :) but it's never been a major problem for me and it usually clears quite quickly.

  • I think you are right about it redistributing elian - i think it even goes to my face - i am wearing secs and have noticed that when it is really bad my specs are a tighter fit and i get an indentation mark along the side of my face from the 'arms' of the frames - as if having a cannula on wasn't undignified enough already - now i have tram lines lol! :)

  • Hi, I also suffer with oedema. My medication is 40mg Furosemide which if the swelling is excessive and not reducing, I increase it to 80mg for a couple of days. The last bad bout, I was on 80mg for 5 days. I also try to keep my feet elevated, and if it is not too painful go for a walk as this sometimes helps. Keeping my feet elevated all the time is not always possible as I live on my own, and if anything needs doing there is only me to do it. I would check with your GP or chest consultant about being able to do temporary increased dosage. I hope you get it under control, take care. Richard.

  • Hi Richard - i did double my dosage for a few days once to 80mg out of sheer desperation and yes, it did the job. I just felt a bit nervous about taking it upon myself to do that. Perhaps I need to be a bit more stubborn with the doc and tell him it just isn't working (again). Last year I even had oedema of my arms and hands - they were like balloons it was awful. I had been attempting to walk a rather steep cliff path when the weather turned really hot too. I almost didn't make it to the halfway point beach kiosk to get help home :( Since then i've never considered it 'just a bit of oedema' like i used to. It's annoying though as it makes it too uncomfortable to do my daily mile. Still, think you are right about increasing to 80mg - if that doesn't do it i don't know what will. Thank you. P.

  • Hi Parvati,

    I suffer from pulmonary oedema. As well as the fluid in the lungs I have the swollen ankles and legs, and my wrists and face puff up too.

    I am prescribed 80 mg Furosemide daily. I'm supposed to take 40 in the morning and 40 at lunchtime. I asked my GP could I reduce that and she said ok, but if the 40mg stops working I've to go back to the 80 mg. To be honest I was just sick of running to the loo all day!

    I did have a problem a few months ago where my coughing was getting worse and I was admitted to hospital for four days to get intravenous furosemide. Boy did that work! I had my fluid intake limited and my output monitored. My pottasium levels dropped when I was on the IV furosemide, but returned to normal after I went back to the oral medication. I think that's why doctors try to give you as little as possible, because it can affect the electrolyte balance in the body.

    Are you reducing your salt intake? I know that can affect the amount of fluid I'm retaining. Just a thought.

    Anne

  • Hi Anne, Interesting that you mentioned a cough - I currently have a dry barking cough - there's nothing for a while and then it starts up and i can't stop - tears streaming down face etc. It has coincided this time and also a month or two ago with my oedema - though i hadn't thought they might be connected before. In fact the last time i saw my GP was for a frusi prescription and 'something for my cough'. If it doesn't improve soon I will go back to my GP. many thanks, P.

  • It's a dry barking cough I get - it's only productive when I have an infection. I know that when my fluid levels are building up my cough gets much worse. A dry cough is one of the symptoms of pulmonary oedema. In fact that and breathlessness is what made me go to the doctor in the first place. The chest x-ray I got the next day showed the problem. I remember before i started the furosemide that even bending over would send me into fits of coughing.

    If I forget to take my furosemide I can easily put on three or four pounds overnight. That's another good way to monitor it.

    Anne x

  • I have had swollen ankles off and on for a few years - at first didn't take any notice as my Mum had same and she never had COPD. The last couple of years have understood that my swollen ankles have been connected to my COPD, and have been worsened by warm weather and by being on my feet for an hour or more. Like you, a night's sleep would help.

    Miracle .... for the last few weeks they are normal, so much so that I have new wrinkles all round ankles as the skin has returned to normal after so much stretching - the solution for me seems to be the acupuncture - my pulse rate also healthier and think they are connected.

  • Parvatti, I have the very same problem and have mentioned it to my respiratory nurse several times without any real advice other than to keep resting, which does not help. My GP then prescribed 60mg furosimide for a short period (10 days) which did bring it down but I am told that this level can be harmful to the kidneys so would not be prescribed regularly. However, 6 weeks later, my feet and ankles have not swollen as badly as before.

  • I too suffer with Oedema, but I take 80mg of Furosemide each morning and have done for quite some time now. I was prescribed only 40mg at first but when that didn't work, it was increased. I have repeadtedly informed my doctor that I am still swelling up, particularly from my knees down. It doesn't matter whether it is hot or cold, I elevate my legs, I don't use salt, etc. Still the problem remains.

    Sometimes I am 'rushing' to the toilet, other times hardlys not atall. If I sit my knees and ankles swell, if I walk my knees and ankles swell. Nothing seems to alleviate the problem. A trip back to the doctor is on the cards methinks.

  • Ditto - i hear accounts of folk being in the bathroom half the day when they take diuretics but i barely seem to 'go' any more than usual. I think our bodies must get accustomed to it pretty quickly. P.

  • I get oedema but only occassionally so I dont take furosemide on a regular basis. I only take 20mgs if i think its particularly bad i/e if it hasn't gone down after being in bed all night. Constant use of the diruretics can have an adverse affect on your kidneys. We seem to be in a no win situation :-(.

  • Hi maureenv, I wasn't taking fourosemide on a regular basis but this bout just doesn't want to go down for some reason. I took 80mg this morning out of desperation as i had a meeting to attend and really didn't want to do the 'bag lady in extra large flip flops' look. I have to admit my feet aren't quite as bad as they were yesterday evening, but they are still pretty swollen. At the meeting i mentioned to a colleague that i had got up at 4am and doubled up on the frusi in a vain attempt to 'deflate', and oddly enough he said the same as you about kidneys. I knew he had serious kidney problems but only today found out that his troubles were caused by having to take so much medication for severe water retention. It has certainly made me think twice about upping my dose in future! P.

  • I was worried when the doctor increased my does from 40 to 80 mg.However, the doctor said that's not that big a dose - that she had seen patients on 600 mg daily! Obviously their situation must have been pretty severe.

    I think, though, that perhaps it would be good to check out with your doctor the advisability (or not) of upping your dose when needed.

    Anne x

  • Parvati, have you finally sorted out your fluid rentention problem? I must admit I haven't, so I would be interested if you had.

    I recently went for my six monthly check with my respiratory consultant and was told to stop the Furosemide immediately. According to him, fluid retention is down to mobility problems that copd sufferers encounter. I stopped them as I had been told to do but ended up back on them as my feet and ankles just ballooned up. I'm taking 40mg at the moment but if there is no improvement by the weekend, then I have to up it to 80mg.

  • Hi Parvati.

    I take 80 mg every morning and have done for the last 3 years. They have always been effective for me. If I stop taking them my legs swell up, mainly my right one. An added benefit I found was that water no longer gets in my chest area and breathing becomes easier. As I say, I take them each day, apart from appointment days, and so far I have had no ill effects. I do, however, keep my legs elevated as much as possible.

    Bobby

  • My doc warned about kidney side effects taking them all the time on the label I only take only when bad

  • Hullo Crispy. I was in hospital for five weeks with cellulitis in my legs three years ago so that is probably why they keep me on a higher dose. They keep me on a tight rein as regards blood tests and regular checkups and so far so good.

    Bobby

  • I have it all the time goes down a bit overnight, then i the morning i have to put on my compression socks which i get from my doctor which also stops my skin from caking open which is very sore plus lots of cream, there is only one tablet i know which can make them swell and that is a heart tablet otherwise it my be poor blood circulation hope this helps keep your feet up as much as pos and an eye on your legs I have had it for years not nice i can only wear them crocs on my feet

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