Long term pred users

How long have some of you been on prednisilone? Years?

Sadly it's looking increasingly likely I will be taking it long term because inhaled steroids simply have little or no effect. The doctors have expressed concern about the long term side effects but I have little option - without them I would almost certainly end up in hospital- difficult to control adult onset asthma has a much greater risk of morbidity. I would appear to be in the 5 - 10% range with difficult to control asthma.

I had to go to my GP last week because I was very poorly - I blew 200 then 250 before being put on a nebuliser. The doctor prescribed more steroids.

I am resigning myself to the fact that eventually this will probably see me off .

22 Replies

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  • Always stay positive, I hate steroids and avoid taking them, but if you need them then please take them. Let me know how you are. Take care 😊 xx Bernadette

  • Hi Brenviking

    I really so genuinely sorry to read that my friend. I have been taking a 10mg daily maintenance dose of Prednisolone for about 3 years now. When I get an infection or my chest is bad they increase it to 40mg daily and bring it down quite slowly. I also have my own Nebuliser, C-PAP machine and use Ventolin, Atrevent and Symbicort. I have naturally piled on the pounds but I am an optimistic chap, and hope that I can eventually lose some weight. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Hi ... been on 25mg daily for 2yrs not ideal but for me the benefits outweigh the side affects ATM .. good luck

  • 3 years and six months! for PMR. I have now been free of the stuff for just over 3 years.

    I am now trying to reduce the inhaled steroids but very slowly.

  • 10 months on 50mg a day which I've recently got down to 40mg but they have no intention of moving it any lower any time soon :( hate pred but also need it to breathe so there's not much that can be done when they've exhausted other options.

  • More than decade. Like you say not ideal but better to have side effects than be dead.

    My background dose varies 4- 10mgs with increased to 40 mgs oral & IV as needed to manage exacerbations.

    Its horrible to be part of a statistic but try to keep your chin up. We all have a mix of good & bad days

  • 19yrs now, but without them wouldn't be here. I have Chronic Brittle Asthma, I can be doing nothing & have a massive attack & end up in A&E. I have nebs 4x daily, which I'm using now, C-PAP, oxygen. Massive problems with perfumes, aerosols, cleaning products etc. I have severe Cushinoids syndrome, which is umbrella term for side effects of streoids, Diabetes, Fibromyalgia like symptoms etc. But I'm still here!!! Have put on loads of weight since I've been ill, but have managed to lose a stone so far this year & am able to swim (as long as no-one sprays anything in the changing rooms!) Never give up, you're still here!

  • I've been between 25-40mg for 3 years. Side effects are piling up latest one is muscle wastage. I hate them, I genuinely have to talk myself into taking them some mornings because the thought of them makes me want to puke..

    I think it's harder because I still have a lot of symptoms despite taking them. But without them I probably wouldn't be here so what you gonna do?

    My consultant is trying to get me into a medical trial in an attempt to reduce/come off them but it's proving tricky as I have to be stable for 4 weeks before I start.

    It is horrible but I have learned to live with it and even manages to lose a stone since January by joining slimming world it's slower than others but it has worked. So it's not all completely hopeless.

  • Hi im like you my daughter is on slimming world so I have been following it as well and i was down a stone last week but thats since January my daughters lost 3 stone , ive still a long way to go but I am hopeful if nothing else im eating more healthy as my gp said that I wont loss as much due to all the medication i am on as i take a lot of medication as i have fibromyalgia as well but I am still here just a little rounder

  • 'Pred Bursts v Pred Daily' is a new Post I've just added to this Forum - on the below link - which may tie in with your interest / concern regarding Pred:

    healthunlocked.com/asthmauk...

  • I have been taking steroids daily since last September, the last time I was in hospital. It has helped me get through the winter without needing an A&E visit. I am working with my GP to control my pred dosage to get through difficult periods. I don't like the idea of the side effects, but on the other hand it was the best winter I had in years.

  • Hi, glad to hear you have got through the winter without any major problems. Hope it continues. Take care 😊 xxx Bernadette

  • I was on and off oral steroids from when diagnosed with asthma in 1967. Eventually in 1991 I was put on them constantly and have been every since. My maintenance dose has gradually gone up, am now at 20mg but obviously at times I put them up and then titrate down 5mg a time till I get to 25mg then I do it at 1mg a time. Yes I have got side affects, osteoporosis, diabetes, muscle wastage, joint problems, restless legs, weight gain, reflux, thinning of the skin etc but I am still alive and most importantly for me I can up the pred immediately I feel my asthma exacerbating. I am also on many other medications but as stated I am still alive. I currently take Pred, Phyllocontin, Ranitidine, co-dydramol, tramadol, Adcal D3, alendronic acid, Montelukast, atorvastatin, losartan, amitryptiline, carbocisteine, salbutamol, atrovent, fostair, clenil (was flixotide up to October 2016 when hospital changed me to last two but not working, seeing them April to report how it's gone), lantus and novorapid. Sorry for long post. Take care of yourself.

  • If u need long term steriods I think there is a recently new injection u can get instead of steriods. Cant remember the name of it. Soneone on the site might know. Of course yr consultant would hav to decide if injection wud help u rather than continuous steriods with their side effects.

  • Hi i wonder if the injection is zolair as my consultant is considering trying me on that instead of mycrpheolate fetil which I take for another lung condition. I might not have spelt it right.

  • I have been taking Prednisolone all the time since 2012. I'm currently on 50mg. I hate being on such a high dosage but know it helps me.

  • Hi i have been on and off them for years , I have been on 15mg daily for years well as preventor inhalers and nasel spray , I also take mycrpheolate fetil which contains corticosteroids as well that's for another lung condition but even though I have alot of the symptoms of long term steroid use, I wouldn't be here without them, I have home nebulizer and oxygen now as well and I'm only 47 just this week, but without them i wouldn't be here so I am just happy to be alive even thought I have a buffalo hump, moon face , club fingers and generally a bit rounder I am alive so caught between the devil and the deep blue sea. I have always had as the doctor said difficult to control asthma as there is no specific triggers apart from chest infection.

    I do hope that you get some sort of treatment that helps you, unfortunately it might have to be long term low dose steroids but I am sure that your consultant would only advise as a last resort,

    Good luck

    Loraine x

  • I see the respiratory specialist on Monday. My wife has insisted on coming as she, like me, feels that things aren't being treated seriously enough - in under two years I have gone from being able to run 5k in 25 minutes to not even being able to finish a sentance.

    My work colleagues keep saying to me " you ok? You're very quiet".

    It's because I am struggling to breathe and talk.

  • I know how that feels and I agree with your wife. Let us know how you get on. Take care 😊 xxx Bernadette

  • I saw the specialist today. I am ashamed to admit I blew up at him when he suggested I was not using my inhalers effectively. I did a spirometry test which showed a third of what a normal person blows.

    I am being referred to Wythenshawe hospital as my asthma is so difficult to control - xolair was mentioned but we will have to see what happens.

    These past couple of weeks have made me realise how poorly I have been - I have just tried to keep going and not have time off work, I have not really told anybody how bad I have been but people are starting to notice - bobbies are generally not good at opening up.

  • Hi, I have been on a steady dose of Prednisolone since 1992. I was also diagnosed with a fungal lung infection called Acute Bronchopulmunary Aspergillosis (ABPA). I had to have most of my right lung removed in 1999. I'm on lots of meds and relievers but I think without PRED, I'd have been a gonner! Yeah, ok, I have developed Osteoporosis and broken multiple vertebrae, Sternum, ribs and various smaller bones but PRED kept me here alive to break said bones!

    I have had tremendous care from The North West Lung Centre at Wythenshaw Hospital, Manchester. Professor D. Denning is the man I put my trust in.

    I suggest to you, go with what the physician tells you. Best regards.

    C.x

  • Hi Brenviking ,

    I understand your concern.

    Before I developed asthma as an old bird I had Crohn's disease . I took prednisone for years. Luckily after many years of surgery and Prednisolone I am now in remission.

    I take inhaled steroids daily and periodically have to take a course of prednisone if my asthma flares up.

    To try and stop my osteopenia getting worse I exercise daily and take high dose calcium and vitamin D .

    Speak with your GP, asthma nurse or pulmonary physician as we are all different.

    " One man's medicine is another mans poison"

    Unfortunately it's a pain in the backside but we must try and manage our own health as well .

    Good luck.

    Kind regards Maryeileen.

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