I have COPD. At Christmas I had an exacerbation which resulted in me being admitted to hospital for ten days. A month later I was readmitted with another Exacerbation - I was in hospital for just over two weeks. I had been prescribed prednisolone in November and this was continued. I came out of hospital in February and I am still on prednisolone now. My legs and feet are enormous with fluid. My legs are hard and tense and while it is not painful it is extremely uncomfortable, and at times I cannot get my shoes on. I take a diuretic everyday but that does not reduce them at all. My GP has prescribed support stockings which I wear. He has said I just have to accept the situation as part of using prednisolone???
Has anyone any ideas on how to deal with this problem - my legs and feet were so bad last night I didn't sleep. I have not had a full nights sleep in months and now I am beginning to feel really down about everything.
Help - I need to get control of my life again!
Written by
suzyflip
To view profiles and participate in discussions please or .
Steroids, which are anti-inflammatories, have many side effects and they can be our friends, but I personally try to avoid them wherever I can. It has to be a really bad infection to persuade me.
If it were me, I would want to ask exactly why you are still on steroids after all this time and how long they intend to keep you on them.
For further information herewith some information about steroids
I was very ill at Christmas - and of course that was why the steroids were upped. And as you know you cannot just stop taking prednisolone, it has to be a weaning process. Unfortunately I have had a series of infections and each time the prednisolone is increased. On the brighter side I am down to less that half the original dose!! So that is a great improvement. I wish I had been given more details about the side effects long term steroids can have. I have put on a lot of weight, my face is very puffy, I have a double chin that Margaret Rutherford would envy. My skin is very thin - like crepe paper and I bruise very easily - great black bruises - totally out of proportion to the actual injury! And I find I get exhausted very quickly.
However having said that lot - I am alive for which I have the doctors/nurses and Prednisolone to thank! I just wish I could do something about the legs and feet!!
Hi Dorall and thank you for taking the time to reply to my query. I do actually elevate my legs and feet quite a lot. As for salt I only ever use it when I cook potatoes. I microwave most things which reduces the need for salt.
I have not seen him since I came out of hospital. I see the respiratory nurse who has the same attitude as my GP!
Hi Gorden, you can get prescriptionn support knee highs for men and women, or you can get some flight socks, I use these when my ankles feet legs swell. Also Boot's the chemists firm support knee highs, I've known men to use this too instead of the prescription ones for men.
So sorry to hear that you are having trouble with your legs suzyflip. My dad is on a very high dose of prednisolone, started a month ago and has another month to go. He hasn't said it has affected his legs, something to watch out for though. Do you go to a Breathe Easy meeting, run by the BLF? Check out their website for details if you don't and are interested. The reason I say this, me and my dad go to one nearby and it is amazing what knowledge and help you pick up from people in the same boat as you.
Also, you don't have to wait for an appointment to come through to see your specialist, ring up his secretary and request one asap. They are there for you don't forget and don't be afraid to take charge of your medical care. You need to discuss your legs asap just to be on the safe side.
Hi Tanyamarie - thank you for replying. The nearest Breathe Easy is 15 miles away - however I will make enquiries about their meetings. I do hope your Dad is feeling better. I think if we had some real sunshine we would all feel a lot better. I think the warm weekend we had at the end of May was probably our summer!
best wishes
Sue
Hi suzyflip
This is very difficult for you, does your swelling go down over night? I hope so, when it doesn't you need to get this seen to as it can indicate another problem. If your doc is not taking notice of this, see another doctor for advice.
If your swelling does reduced overnight put your support stockings on first thing when you get up. I find I particularly get swelling with heat and humidity. I don't take prednisone unless I have a lung infection which isn't very often thankfully.
The gravitational swelling can be common as we get older but it you are experiencing pain and it is interfering with your sleep I would think you need a 2nd opinion or referral to a more specialising doctor.
Hope you can get some relief real soon.
Auntiemary xx
PS give the helpline a ring on Monday they may be able to advise you further on this.
No my legs and feet don't go down over night, just some days they are fatter than others. I get restless leg syndrome which just drives me crazy. I am worred about disturbing my husband so I finish up going downstairs and spending the night in a chair watching tv and playing scrabble on line with my sister in Australia!
As you say water retention is more prevalent in the older person (& that;s me) but this is an abnormal amount of fluid to retain.
I will give the help line a call on Monday - thanks for that
Hi Suzy, Do you think your inability to sleep is caused by the leg pain ??. My experience of long term prednisolone is limited as i have only taken them longer than 3 weeks on 1 occasion and that was years ago so i don't remember wether it was a problem but i don't think so . I have woken up at night for a few years now up until i was put on using a bipap at night, now i hardly ever wake up and get a good 7 hrs a night on a regular basis . If it is not the pain waking you up and you think it might be that you feel the leg pain because you are awake it could be lots of reasons . Irritable legs , dreaming (especially if you are stressed ) , cramp and many other reasons also do you take the prednisolone in the morning ?? . ignore most of this of course if it is the pain waking you , i sincerely hope you resolve this problem as sleep is essential for good health , good luck xx
I have not been on prednisilone for more than three weeks either, but even short term I don't sleep very well while taking it. My GP tells me this is a completely normal side-effect. It also results in me being very muzzy-headed in the day time!
Thank you for writing. I go to bed at a reasonable time, go to sleep and 2/2.5 hours later I am awake. Its not my leg problem that it causing it. My GP gave me amitryptiline but they don't seem to make any diffence, I can take up to 50mg per night but I then live in a fog the nextday, because my brain is zapped out. So I have chosen not to take the amitryptiline as I figure that a lower dose won't work. I do take my prednisolone in the mornings, as I can get hyperactive on them, although that seems to have stopped now I have been on them for such a long time.
Kindest regards
dinnyrayner, has a lot of good points there, among prednisone side affects is insomnia, and also if you are carrying excess weight have you been tested for sleep apnoea, this can also disturb sleep and cause day time tiredness.
Another thing that will be important to you suzyflip is daily exercise routine, walking little and often until you can do around 10 - 20 mins, then do 10-20 mins three times daily and so on. This might help with the fluid retention and excess weight. Walk out when you can and in the house when weather is bad.
Prednisone is awful for weight gain I do sympathize with you. I had a similar experience after only a month on it. It did help me be more active though.
Is your steroid dose a maintenance dose now I wonder, you will need to chat with your doc about your dose and the continued prescription. I hope you can get some relief real soon, and I hope your doc agrees that it will be ok for you to come off the prednisone soon too.
Something else that may help any time you are resting the feet, legs, do some ankle rotations and foot stretch and flex movement, ask your doc about this, also ask your doc if he can refer you to a pulmonary rehabilitation program to help recover some level of fitness, help manage your symptoms.
Take good care and wishing you an improvement all round in the not too distant future.
Hi Zoee , yes i have sleep apnoea , hence the bipap , i had a cpap for a while which was great but the doc thought a bipap would suit me better . I usede to wake up at night gasping for breath , so bad that i thought i was being strangled , thank God that doesn't happen anymore .
I have wondered about sleep apnoea - I will make an appointment to see my consultant and discuss all these points with him.
Thank you all for caring.
Sue
Having acupuncture for last 6 weeks and apart from in the muggy weather, mu legs and feet had gone back to normal - so much so that I have new wrinkles where the swelling had been ! Not had prednisolone for a couple of months now either . My fluid retention had been pretty constant for a couple of years until recently . Hope that helps.
• in reply to
Hi Juliekkay, Can you tell me have you found the acupuncture useful? My husband was recommended to have it as part of an ongoing treatment but we never actually got there. Would be very interested to hear your feedback. Thanks TAD x
• in reply to
Hi Tad I wholeheartedly recommend acupuncture - for me it is so helpful and all my stats are better and I have become more exercise tolerant since I began 6 weeks ago. I felt so much better that I think I pushed it a bit using my increased energy up - achieved a lot though This weather has hit me hard, and still not as hard I believe as it would have done reviously. I had a pain in my back too that has completely gone. I mount the stairs generally easier than before. My face is a better colour and ankles are normal showing better blood circulation. I am also so much more calm. It's costly I know, and very much worth it in my view. Advice from my acupuncturist is to find one via acupuncture.org.uk/ just put your postcode in . I would select one who does traditional chinese acupuncture and ring them up to 'interview' them. My course is for 6 weeks once weekly then a maintenance programme - weaning me onto once a month hope you keep me up-to-date on this. all the best to you and your husband.
• in reply to
Thank you so much for your comments - I will print out your reply and act on it! Thanks. TAD xx
Go back to your GP and tell him this is not expectable!!! I had the same as you and was admitted , my consultant lowered my dosage for a while and the my retention sorted it's self out with bed rest, feet raised, also please ask for some form of treatment to go with the steroids for osteoporosis!! It was not until i changed surgeries i was given anything apart from ADCAL and low and behold had a coughing fit in the shower while I was in hospital and compressed 2 vertebra, so please ask you Doctor to refer you to the consultant if he will not help you, we are too easily brushed off as COPD rejects, thank god I have a wonderful GP team and consultant. Good Luck.
I have today been to see the Respiratory Nurse ( not one I had seen before). She has suggested a change to Aminopheline and wean off the prednisolone. She is going to get me liquid oxygen because I find trying to carry an ordinary cylinder when I am walking is exhausting, so I don't use it. She is also going to investigate sending me to a sleep clinic. So all in all quite a productive morning - thanks to you guys who put me on the right road.
Hi Suzyflip, I have been on Prednisolone for most of this yr and I feel so sorry for you. I too did not sleep whilst on them and I was chuffed if I got 4hrs sleep. I looked and felt dreadful. They did not seem to work on my asthma not prevent me from getting infections so in the end the doc and consultant both decided to wean me off them. I felt better within a wk. I would ask to see your consultant asap, phone his/her secretary if you can, I have done this in the past and it works. I got to see him in 1 month and he sorted my meds out there and then. Good luck. Sorry I do not know why you are retaining water, your consultant should know. Maximoney
I have been just the opposite.... after 77 days of feeling totally rubbish after coming out of hospital with a bad chest (had gone in for a finger op), eventually I was put on Prednisolone last wednesday for 5 days.... 30mg once a day....
From being able to run and cycle most days could not even walk upstairs.
I had had about 8 courses of antibiotics, been taken into hospital by ambulance with a bad asthma attack... I had not suffered one for about 15 years. All my inhalers were out of date !!
Prednisolone has been like a magic pill.... within 4 hours could breathe, ran across a car park without thinking on Friday...
Side effects, slight muzzy headache for last 2 days, peeing for england !! cramp in my feet at night... back to doctors tomorrow to see what they think.... fingers crossed
You need blood tests to see why you are having this swelling in your legs and feet. Salt doesn't help and you must not have any salt in your food. The fluid should reduce if you stop the salt. Change your doctor if he isn't listening and you don't have to put up with it. Try the no salt and change your doctor and insist on wanting to know why you have this swelling.
The ability to reply to this post has been turned off.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
This weather has hit me hard, and still not as hard I believe as it would have done reviously. I had a pain in my back too that has completely gone. I mount the stairs generally easier than before. My face is a better colour and ankles are normal showing better blood circulation. I am also so much more calm. It's costly I know, and very much worth it in my view. Advice from my acupuncturist is to find one via 
Round and round we go
Should steroids clear exacerbation symptoms in COPD flare up?
Co2 retention 
Steroids!
Hi again and a quick question
