Long term use of Steroids: A friend has... - Lung Conditions C...

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Long term use of Steroids

footyfan profile image
12 Replies

A friend has had numerous issues this year resulting in use of steroids, only problem is every time she stops them she can't even walk from one room to the next, wondering if anyone has any info regarding problems with long term use of a small dose, She takes prednisolone 5mg tablets, currently told to go back on to 4 a day till after Christmas then discuss with consultant on visit in January.

She feels that even a lower dose that 4 tablets a day gives her some quality of life and really wants to be able to have an informed discussion with the consultant re pros/ cons of long term use.

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footyfan profile image
footyfan
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12 Replies

Hi, I can only speak from my own experience which is that every dose of steroids I take leaves me weak and trembly with legs that turn to jelly when I walk. I've had Steroid Myopathy now since finishing the last course if steroidson October 6th. In hospital I was checked out by a neurologist and cardiologist as well as the respiratory team and they all agreed that the weakness in my legs was due to steroid myopathy. My legs are beginning to get a bit stronger now and I can walk for longer periods but for weeks and weeks I couldn't stand long enough to brush my teeth. Your friend should discuss this problem with her doctor before her problem gets any worse.

sassy59 profile image
sassy59

Everyone is different footyfan and all I know is that Pete could not be without his 5mg x 2 tablets of pred every single day. I must admit though if he has a bad chest or an infection, he cannot really see the advantages of increasing the pred dose so tends to rely on his antibiotics. It sounds as if your friend needs her 4 tablets per day and she should stay on that maybe until she sees her consultant again. Take care xxx

One thing that continuous use can cause is osteoporosis. Ask doc about Adcal-D3 tablets.

Mocarey profile image
Mocarey

I have been on 5mgs of prednisolone for 44 years I have had periods where I have had large doses when I have been really poorly. My con said if I hadn't been on them would have been in a wheelchair years ago.

My skin is so thin you can see every vein in my hands and suffer a lot of back pain but basically think they have been a life saver for me. M x

longlungs profile image
longlungs

Hi footyfan,it is a love /hate relationship we have with them.I understand the medics are saying they can make us more vulnerable to infections.My doc has asked me to try not to use unless on deaths door so to speak,which suits me down to the ground and if I have to I normally only take for two to three days.But we are all different.Ive never been a big fan personally.Because I dont take the steroid puffers they wanted me to take 5mg daily and I started then stopped.I have been very fortunate with few infections (laying across wooden table now,dont want to tempt fate.)But as I say thats me by no means a recommendation. :) Janexx

footyfan profile image
footyfan

Thank you for you responses, it has given me more questions for my friend to discuss with consultant, I understand that everyone is different and what suits one person doesn't suit another. X

Hi, though i can't answer your question, it seems as if i'm forever on steroids which has kept me away from hospital admissions, well for the last 3 mths anyway! I feel quality over quantity is the best option, but that's only my opinion. Sheila Xx

footyfan profile image
footyfan

many thanks, I too feel that quality is best, I see no point existing for 20 years whereas the option may be to live for 10, I know its easy for me to say as I am not in the situation, once again thanks for your view.

bubbles37 profile image
bubbles37

hi hope u & ur friend r ok. i was told about 08-09 with copd, i was put onto 3 diffrent inhalers, but with them i doubled in weight so haven't taken then for a while, yes i do get very breathless, but honestly i feel lots better not taking my prescribed meds, yes i do still get breathless but my meds dont really help, i'd say if she feels better without leave her be.

TEDTHEBEAR profile image
TEDTHEBEAR

I have to stay on 10mg of steroids for life. It was 5 but has just been increased as every time I got up to a big dose due to infection, after I have reduced them to a maintenence dose after a few weeks I feel weak and lethargic. The reason is because long term steroid use has stopped my adrenal glands working, I had a synathecen test before they tried to take me of them completely but this showed the adrenal gland problem it is quite common in long term steroid users, and everyone should be tested for it. The steroids take over from the adrenal glands to give them an extra boost while your poorly but often when you reduce or stop them the adrenal glands have gone to sleep and don't kick in again, the only answer is to take a maintenance dose daily. I am now waiting to see an endrocronoligst over this as there are other steroids apart from prednisolone. If you research secondary Adrenal gland insuffuicency on the web theres is more information.

CornishBrian profile image
CornishBrian

Steroids have always had a bad press, for one reason or another. However, ask yourself why was the dose increased in the first place? If it was because of an infection or flare up, where would you be now without it? How long would it take to recover fully without it? OK, it may seem a long time that it is taking you to recover but please bear in mind that for a normal flare up in a person of early stages of COPD, the initial recovery time is 6 to 8 weeks....that's the initial stage. This is taken from the fact that you shouldn't be asked to do any breathing monitoring within eight weeks of an infection because it could prrmanantly damage your lungs. There is no way to reduce this time. The only option to you is how soon you get back to gentle exercise and then start increasing it? The answer to that would be that even if you are restricted to a chair, light exercise is possible and should be carried out . Otherwise you have to start from scratch and so face a massive battle. Ever had a leg in plaster for six weeks and then had to struggle to rebuild the muscle? You are doing that but with your whole body.....no wonder you wobble.

Cornish Brian, you said a normal flare up in a person of early stages of COPD, the initial recovery time is 6 to 8 weeks. What would normal be for a moderate COPD er? Sorry for butting in, Recently diagnosed and learning.

Carole

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