I've been on steroids since the beginning of January, got down to two a day and now have to increase them again because of breathlessness. Prior to that, from October onwards I was taking seven day courses, off for a few days, then I'd have to start them again as my breathing worsened again. I have emphysema which I think must have developed to the very severe stage. No perceivable outward infections and no sputum production.
Would be grateful to know other steroid users opinions.
Hi Butter fly as far as i understand steroids are not good long term but like you sometimes we need them to get some relief. Ive been on them for last four years usually seven days at 6 a day. My daughter was on them for 7 years every day x6 due to her breathing being very bad. She now has steroid injections. I think they damage bones ...have you had a bone scan? Im going for one in two weeks then gp will prescribe calcium supp depending upon outcome. Thin skin is another risk as is impact upon other organs . My daughters left kidney failed some four years ago and that is what consultant said was a cause hence injection now. Its difficult to try and even out the pros and cons as im sure you agree if youre gasping to breathe the cons dont enter your head ....well they dont in mine . Im on 10mg at present but to be honest they arent doing much so might have to increase. Hope this helps xxx judith
Did reply to you Judith but don't know where it's gone! Ghosts? Gremlins?
That's 2 replies I've lost tonight. I'll to see if they eventually appear.
Cheers. Would appreciate that Stitch.
77 side effects! Won't read that yet. I want to sleep tonight.
The BLF have a leaflet about steroid use, both inhaled and in tablet form, which lists a few side-effects and states:
"people with COPD on high doses of inhaled steroids are slightly more prone to the chest infection pneumonia".
Thanks Toci. Will read that but was hoping for peoples' personal experiences too.
Not something I take, due to severe side effects.
Thanks for replying Toci. I have to take them because of my breathlessness. The nurse just upped them today. I hate taking them!
Hi butter-fly, I have been taking prednisolone for over 2 years, decreasing down to 5mg per day. When I saw consultants registrar in December I asked about coming off them completely, having put on over 3 stone in weight in that time. She sent me to have a blood test done to find out if I was producing enough of my own steroid. The result was that my adrenal glands were not producing enough so I had to have my prednisolone increased to 7.5mg. They have said that they may change prednisolone to hydrocortisone, will be seeing consultant/registrar on the 5th Feb so will find out more then.
There are a lot of side effects with Pred, my main one is the weight gain, sometimes insomnia and others very tired. I have so many medical problems that I'm not sure what's causing what.
Wishing you the best with your condition and hope you don't get too many of the side effects.
Jan
Hell Titchyji.
Interesting reply. Cortisone I believe is still a steroid but I wonder if it would be more kind to your system. I would love to know the outcome of your next visit to your consultant.
Perhaps you'd keep me posted.
I have already gained weight, and my skin has gone thin with broken veins now showing. I also have the nasty effect of fast thinning hair!. 'Fraid I'll have to sit and wait for the other nasties to kick in!
Gawd,I didn't realise it thins your hair as well!
I'm taking Vit C plus echinacea 3 x daily at the moment as feeling low & vulnerable to 'the nasties'. For myself, I want to keep my immune system in fighting form (the b....y steroids deplete that as well).
I'm also interested to hear how cortisone works. I've always believed there must be an alternative to Pred which is probably very cheap.
Per my husband's consultant Seretide (which is a steroid spray) is probably the cause of his fragile skin is and cataracts. He's also been put on calcium tablets to counteract brittle bones.
Hi AbbeyRudi
Just got the calcium prescription today. So sorry about your husband's cataracts. Saw on Stitch's reply list above about them.
What a list! Still on the positive side it doesn't say anything about ingrown toenails!
Or howling at the moon ????
I was on steroids for 2 years - i started at 60mg a day and reduced them as i started on an immunosuppressant. Long term effects? Well there are loads but you probably won't get all of them. You will need extra calcium because they can cause bone loss. You will also need to take a drug called Alendronic Acid which relates to the bone loss and calcium etc. My skin thinned and I bruised more easily. You may get an increased appetite so watch what you eat and if you do put on weight the fat may redistribute to your back of neck and belly. The worst thing for me was the 'moonface'. I am not sure what dose you are on but anything over around 10mg a day will probably cause it. All that said you will need to be on them for a while. There are other issues people have had around sleeplessness, depression etc but you asked for personal experience and I had none of that. Different strokes for different folks as they say. I did also have more energy and a sense of wellbeing at the outset but as the dose lowered so did these! Good luck - people hate them and they can have bad side effects but for me they are a wonder drug.
Marie x
Sounds like you had a pretty rough time of it Marie. A close family member who lives abroad had the effects you mention from steroids, plus being rather manic with paranoid mood swings.
He has SLE. At the time I didn't know anything time about steroids.
I'm on 15mg per day now but I'm taking so many different medications and identifying the effects of each is important to know too so that I don't take conflicting medication. Thanks x
I put on weight but have managed to lose most of it and my face is back to normal now - I never thought I was vain but I realised i was when i saw my moon face (and extra facial hair - forgot about that!). I think I had it pretty easy considering some of the edffects a lot of people have had on here with steroids. I think its important to remember that you probably won't get all the side effects and they are a drug with magical powers for some of us. I have been steroid free for a tear apart from a 5 day course in december for an infection. Good luck.
Marie
x
I don't think it's being vain -it's more a kind of mourning I believe and we all like to face the world with some degree of confidence and how we look affects that .
I had been on a high dose for two years on and off, mostly on. I was getting infection after infection, trying to reduce the dose seemed hopeless. Each time I saw the GP they just said go back on eight tablets. Steroids actually reduce your immunity to bugs.
Ten weeks ago my consultant said "ENOUGH" I had been in hospital for a course of intravenous antibiotics, he cut the steroids back over the ten day stay and gave me a reduction chart to follow. The discharge letter said 'use anti biotic not steroids with this patient' It was hard, it's like giving up tobacco but with real pain, but the difference now is amazing I have had a couple of mild infections treated with antib's and take two types of antib's every day. My lungs feel so much clearer and although I am still breathless and coughing up the usual copd rubbish I feel I can start doing some build up exercises and get a bit of life back.
Steroids are a life safer, but treat them with great respect, in the short term they seem to be the answer but in log term do seem to cause problems.
Hey Stitch, no mention of squints, club foot, teeth falling out etc. We have a lot to be thankful for!
Very interesting Moneal!
Although I don't cough up mucus and only have a slight crackle in my lungs I know from a recent bronchoscopy that purulent (pus, etc.) matter collects in my lungs. Believe this is not so uncommon but you've got me wondering so I'll as my consultant what he thinks about taking antibiotics for it. Sometimes they need a little push!!!
I have NSIP(lung fibrosis) & take 10mg of prednisolone daily and have been doing this for the last ten years or so. I did try to reduce the amount (with my consultant's agreement) because of my weight gain and other side effects but ended up in hospital for 2 weeks with a very bad chest infection which worsened my condition permanently.
I do suffer a range of side effects, the worst of which for me is the weight gain and the redistribution of weight. My doctors recognise this effect and one says doctors call it 'pillowing' or describe patients with it as 'lemons on sticks'.
I only wear trousers- never skirts/dresses because I always have badly bruised legs (and swollen legs due to heart failure). This may sound very vain but I have always taken some pride in my appearance and although in my late 60's am embarrassed by the huge weight gain. I am prescribed Calceos tablets daily and Alendronic Acid once per week to guard against osteoporosis. I do find sleep difficult but have no idea whether this is down to steroids, other of the myriad of medications that I take or the nasty diseases themselves.
Still having said all that, I am grateful to still be alive and therefore despite all the drawbacks will now keep on using steroids unless a good alternative comes along.
Maggie
Hello Maggie44
Isn't it amazing how we can adjust and accept our illnesses. I know we have no choice but it's humbling to read some of the posts on this site.
Besides all the other things that we're landed with, like you, even being in my late 60s I dread
any more weight gain as my appearance has always been important to me too.
My sleep pattern is haywire, getting only about 4-5 hours besides a myriad of other things.
This is a wonderful site as I've learned so much from everybody. I don't ask my doc questions
anymore. I just post on here! Thank for your reply Maggie.
Hi Butterfly. for me - I have really bad reaction, I cannot bear it, heart racing and feeling dreadful so I wont be taking it again unless I'm really, really ill & even then I'd consider slitting my wrists first. I was only ever given them for a week or less.
When I spoke to my GP about it she said that my high dose of daily Seretide plus Blue puffer 4 x daily (just at the moment) will be enough to keep my airways open.
Two things for me; I've noticed recently that I bruise really easily - I'm told the steroids in inhalers aren't enough to cause this but for myself I just dont believe it. 2nd, I recently discovered I've had osteopenia (pre-osteoporosis) for ten years. The steroid inhalers may have exacerbated the bone depletion (at least it certainly didn't help). Hoping it's not too late but GP ensured I'm taking extra Vit D3 and calcium.
Hope this helps, P ps try; drugs.com/mtm/cortisone.html
Hi Peeg,
Did reply to your answer above this afternoon but don't what happened to it.
Maybe BLF removed it or maybe I didn't hit the reply button. Sorry you had such a bad reaction
to steroids. They didn't bother me at first but slowly the side effects began to kick in. Didn't know what a lot of them were until I read about them on this site.
Anyway, maybe you are supersensitive to Seratide. It's a bit odd to suddenly start bruising.
Sounds like you have a good GP anyway.
Will take a look at the cortisone website later. Thanks Peeg
Hi butter-fly, I have been on steroids for about 4 years. They had an immediate good effect on my breathing, I have IPF, so the consultant said they were worth taking. I got a 'moon face' at first and was very talkative and excitable and didn't sleep well. I am now on 2 tablets a day (10mg) and have lost the 'moon face' , have lost weight and am sleeping although the doctor has given me a mild sleeping tablet. My skin is very dry but that is caused by the oxygen too I believe and have to take the alendronic acid for bone strength once a week. Otherwise I seem to tolerate it quite well although if I have a chest infection and have to up the dose some of the problems come back. I would say the advantages outweigh the disadvantages but I think each person would react differently. I tried to lower the dose but found it difficult. Hope this is useful. Popplewell
I feel dead even though I'm not on them at the moment!!!
What I have noticed is that they make my veins weak. They suddenly snap, and I get a painful bruise.
Another little gift from the medication Helingmic! It's embarrassing too. Never had the pain with the lovely black, blue and pink bruises.
Hi popplewell. Good to hear from you.
And very glad for you that you are now down to 10mg steroids per day. I do hope you keep well.
Weight gain and the moon face can be pretty devastating. I have a close relative with SLE who was almost unrecognisable because of the weight gain, moon face and hair loss.
I haven't got a moon face yet but do have weight gain, hair loss, jitters and shaking hands plus quite a few others.
As I have strong medication for another condition I never knew what was causing what. I'm much better informed now with all the great replies.
I don't seem to have any hair loss - in fact I think the 'down' on my arms is slightly longer but as it is very fine and blond it isn't really a problem.
One good effect from medication, and I assume it is either Calceos or Alendronic Acid. From previously having very brittle nails which broke easily and peeled, I now have strong, fast growing nails. I don't feel able to use nail polish though since I understand that would interfere with reading Sats.
Maggie
My hair was never thicker when i was on steroids and it grew so fast! It also grew on my face but like you its just blonde down. I have noticed that my nails aren't as good as they used to be now I am off steroids. As fro painting your nails, paint away. They dont' interfere with your SATS, just the little machines ability to read them sometimes.
Marie x
Hmm, must admit I find Steroids very helpful with , so far no side effects, if when I get an infection , and start on the Anti Biotics and Steroids combination, my breathing improves about 70%, trouble is, because of the "Traditional " side effects of this drug spoken of by so many Patients, which as I say, I don't get, my Doc will only prescribe them TOGETHER with the Anti Biotics, so its a catch 22 ! - get me infection first, THEN "Enjoy" a few weeks of greatly improved breathing ! - life is full of contradictions !...
I absolutely agree with you Vittoro. Steroids are a wonder drug but it's good to recognise the side effects some of us can have and use them the old steroids with caution when we can.
Most people who have use them for prolonged periods without any breaks would probably be the ones who suffer most from the worst side effects.
I rarely seem to have an infection, just inflamed lungs (think that's the right word) and worsening breathing so the antibiotics don't do much for me unless I have an infection.
I like the bit, 'get me an infection first.' etc.!! Cheers.
Hiya Butter-fly the great steroid debate,the necessary evil of medications for lungy problems for sure,Ithink doctors are having a re think not prescribing until really really necessary,my doctor has asked me not to take them if I can as steroids are having the adverse effect of causing infections and the continuance of infections as they do lower your immune system quite considerably ,plus if they are needed try to take for only 3 days.Personally im very happy to comply with those instructions was kinda doing that anyway as I dont like the blooming things and dont know if a tolerance can happen or not? have always thought if at the later stages i might need them more so and would they be more beneficial if my body had no real tolerence to them,I have now reached the later stages again, we are all very different but I have been extremely lucky in comparison to some( Im now laying on my wooden table) Of course I do get the odd infection maybe 1-2 a year,my doctor has warned me that I will now gets lots,she also calls me her miracle patient.At the moment Iam in rude health long may that continue whoopwhoop. 
Janexx
That's great to hear that you are keeping well Jane. It's the infections that keep wrecking our lungs bit by bit. You have enough on your plate as it is so here's to your continued good health!
Think I maybe gave the impression that I need steroids for 3 days at a time! Sorry. Meant I'm down to 3 a day maintenance dose (as per my doc's orders) and have to continue to take them for a while 'til hopefully I can stop them. Just wanted to know the overall effects of those little fellows! I know lots of people have very few of the side effects from steroids but it's good for me to be aware of what could happen by listening to real people. (Besides the effects I'm already experiencing!) All the best Sara xx
Hi butter fly my sister had emphysema it is not curable as you know but she takes an inhaler and she is on a nebuliser because it's got bad but I would recommend the nebuliser because it boosts you breathing and you able to stay on you feet longer.
Hi Rosko. You're right. The nebuliser is good. I do use one and have ventolin to put in it. I use it when my breathing is poor. As you probably know it helps as well with loosening mucus in the lungs which is so important to some sufferers.
I was told by the nurse not to get one until I got the go-ahead from my doctor. I wish he had given me the go-ahead ages ago!
What inhalers does she take
Hi Butter-fly, sorry to hear that you have been feeling unwell. I have just completed a month on antibiotics and also increased steroid course (reducing). I am on a long term maintenance dose of daily steroids due to prior long term high dose courses. They can cause osteoporosis, thin skin, cataracts and central abdominal obesity. As long as you do reducing courses of steroids and the regularity of high dose courses is properly monitored by your GP or chest consultant then you should not really have any problems with them; they are an invaluable means of bringing exacerbations under control. All the best, take care, Richard.
Hi Richard. Thanks for getting in touch and I will take on board what you've said. Like you I'm on a maintenance dose (3 a day) but now they are not helping much. I hate the thought of upping them. I'll see what the doc says.
I know they are good stuff when needed. Regards Sara.
i have been on steroids a lot in the past year and a half, i know there are side effects, but there are side effects with all drugs , even over the counter ones,, i believe that if the benefits outweigh the risks , then its ok.
for me i think steroids have saved my life at times, but i do notice when i come off them, i seem to take a "dip" after about 5 days,, my goodness if you read the leaflet out each packet of tablets etc. it would put you off,
try looking up side effects of" humira " that would put you off, but,, this drug has kept me at least able to walk over a few years.[for ank .spond]
i have been referred for a dexa scan for oesteoporosis, [spelt wrong lol], off course this is a downside of steroids, but having a relief and a need to breath at times.is hard to refuse, off course many medications effect different people different ways. so again i say,,,,if the benefits outweigh the risks,,, take the benefits. ,
Good to hear from you Jimmy and so sorry you have ank. spond. Such a nasty condition as I know from my friend. Not so well understood either. Of course you are right about steroids. Like Richard above said, steroids can do a lot of good and for me the need to breath wins every time! Will look up "humira." Don't know yet what it is. Good luck with your scan. regards Sara.
Is ventolin a steroid?
Ventolin is not a steroid Kad21. I believe Ventolin acts quickly to help you to breath better. Speak to your doctor/nurse about it.
Hi kad21 ventolin inhalers is something that is quick relief when breathlessness tight chest ect occurs and helps you breath better. Though you can get inhalers that are a combination of steroids and ventolin if you have any questions about treatments just ask
Well I've been using steroid inhaler since last Wednesday and it's helping me a lot even though I had an asthma attack on Saturday. If you think it's making you more breathless then talk to your doctor and they will change your medicine. Also I don't know weather it's the same for you but this month I seem to be living in the doctors for check ups and other things it's annoying but it's helping i gess
I don't have asthma Reddo so I can't give you any information about it. Best to speak to your doctor. The medication I receive will be different to yours. Good Luck
I have been on steroids for a rash, started at 5mg 9 a day then reducing to 8 the next week and so on now I am on 3 a day, insomnia, ankle cramps, coughs and cold and many more side effects but the rash has gone and now I am getting breathless, doc said my lungs are clear, so it must be the steroids causing it.
Hi people I'm so glad to find you all ,In no now I am not alone,Reading all your posts has relieved me as I have Had breathing Problems for 10 years I take all the usual puffers and when I get infected Steroids and antibiotics,I was on S pireva mist, was taken off and replaced with Genuair Had a very severe reaction and suffer high blood pressure and suspected Angina Waiting results of ECG.Been on oxygen for 10 days now I willnever recover now I am 75,S it seems not all Drugs are helpful ,some are downright dangerous I am back on Spiriva powder now but Nothing will put me right I used to drive do my own shopping visit friends I can only wash a few dishes ,now can't cook or do much else,I hate to rely on every one ,the nurses are wonderful So appreciate them,nothing is ever too much y skin has gone like sand paper can anyone tell me which face moisturizer can use , with Oxygen,It's a lot to learn all of a sudden.Best wishes too all ...Lola
Hi Lola you need a none oil based cream. For everywhere else E45 or Doublebase jel ask your doctor to prescribe it for you. Take care. X
Hi Butterfly, how are you? I just re-read this interesting post of yours.
It's made me realise that my recent unexplained weight gain could be down to Seretide. I was advised to double my dose to 500 2 x daily over the winter. I've now been on 2 x 250 for a month, aiming to taper to 125 until next winter.
The winter months are of course when I go out less & get less exercise so I must work on that. I'm 10lbs heavier & I hate it. Plus covered in bruises, so much so that I'm now convinced that using steroid inhalers is enough to change one physiologically . Grrr.
Ah well, I have to add that I've just had my best winter for years in taking the 500 (plus Carbocystiene & Montelukast).
I do hope all's well with you, kind regards, Peeg
Has your heart been fully checked - including a bubble echo
It had a very negative effect on my mental health, I experienced anxiety and depression, that's the reason I took myself off it. My quality of life has improve enormously both physically and emotionally.
Regular seasonal flare-ups
Over 2 years of steroids will it stop?
Does anyons has experience if Steroids make worst Bronchiectasis?
Continuous congestion
Sorry not been on for a few days.
