Long-term steroid use, anyone?

phoenixoxo Member Posts: 625
edited 30. Mar 2012, 14:59 in Living with Arthritis archive
Hi folks,

Hope you're all doing okay :D

Saw Rheum Nurse this morning for a routine check-up. My latest bloods show that everything's under control, and that's on Enbrel 50 once weekly and 10mg prednisolone daily. I've been trying MTX injections since last November, but the side effects were so terrible that I had to stop – this is my own unique reaction to the drug, by the way :roll:

I'd be happy to stay on Enbrel plus pred as this combination keeps me in remission without side effects, but from Nurse's reaction it's clear that Rheum'ist would rather try me on yet another DMARD. The main reason given to come off steroids is bone loss, but I've researched the area and found there is medication to counteract this.

It may be that I'll have to accept defeat, but my life has been so much easier lately and I just want it to stay that way. Perhaps it's unlikely, but is anyone else here on steroids long term? I'd love to hear from you.

Thanks for reading!


  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    There was a thread, a few months ago about long term pred use and I wish I could remember what it was called. There are arguments for and against but I'm one of those who see pred as a charming, seductive monster. I love it. It works every time but it's not a good thing to be on long term if it can be avoided. Osteoporosis isn't the only problem.
  • MrDJ
    MrDJ Member Posts: 229
    edited 30. Nov -1, 00:00
    Hi Phoebe.
    steroids are a great drug but then again a nasty drug.
    there are pro's and con's but thats the same for any drug out there.

    it was a long time ago (roughly 25) i was put on 60mg a day for 2 years.
    i wasnt really told about any of the side effects but to be honest i didnt care as it was making me pain free, but sadly at a price.
    i put on almost 2 stone in weight.
    i was put on them for my arthritis but at such a high dose it caused a cataract in my left eye. by the time they decided to remove it the damage was done and my retinal nerve was damaged. no one wants to own up if it was the steroids or the arthritis which caused it.so since then im blind in my left eye.
    back then they didnt use to do eye checks when you had arthritis but for certain forms of arthritis they do now.
    10mg is quite a low dose but just in case you notice any blured vision after long use i would get the eyes checked.
  • Aprilann
    Aprilann Member Posts: 49
    edited 30. Nov -1, 00:00
    Hello Phoebe

    I was put on a low dose of 5mg about 22 years ago for RA when my twins were six weeks old - to help me cope. At the time I was also on 25mg and 75mg Indomethacin. I did get down to just 1mg about 7 and a half years ago but then I was admitted into hospital with lung disease due to RA. I have been on 40mg, 30mg and the majority of the time on 20mg. You have to SLOWLY reduce (under the doctor's advice).

    At present I am on 10mg - because a steroid inhaler has been introduced for my lungs - but unfortunately after long-term steroid use I have a touch of depression now due to just 10mg making me feel pretty low. When on high dose I feel SO much better and quite lively to say I have RA.

    I broke a vertebra last year, broke left arm and right wrist, two hip replacements 11 and 12 years ago - yes I have osteoporosis. Three years ago two cataracts. Very thin skin which bruises easily. My weight increased a little initially - 20 years ago - but I now only weigh just under 7st.
  • barking1
    barking1 Member Posts: 185
    edited 30. Nov -1, 00:00
    Hi Pheobe
    i have just come of pred after taking it for 8 months, the doctor thought i had polymyalgia, i have put on 2 stone in that time and its made me very depressed, on the good side the pain relief is amazing if you can cope with the bad side using them as a short fix seems ok but when i saw the rhumy they wanted me off them if possible so here i am day 2 without steroids and very stiff and in a lot of pain but emotionally i feel much better able to cope with it so its a really tough decision to make hope,you get on ok with them xx jane
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    I spent five years taking a steady dose of steroids on a daily basis and I loved 'em because they were the only med that made a tangible difference to how I was feeling. Normally I am not one to be bothered by the prospect of side-effects but after a bracing talk from my rheumatology nurse I decided to wean myself off. I took nearly a year to do it but I have been steroid-free since late November 2011. Do I miss them? Yes. Will I take them again? An emphatic NO. I don't want the osteoporosis, or the hassle of taking the alendronic acid tablet (even tho it was once a week it was a faff and life is far too short) and I don't want my muscles thinned (including those that pump the heart and are involved with the lungs and guts). I recently had a spell with no meds at all and never once thought about taking any to tide me over. Neither did I at Christmas ( a hellish time for me).

    Everyone is different in what they need and in how much they can manage. I made the decision to struggle and don't regret it for one moment but that was MY decision so I really should not complain when things are rough! :) You have to weigh up the pros and cons and go with whichever list is the longer. I wish you well. DD
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Oh this is a thorny issue which comes up often on the forum because, as others have said, pred often works so well that it's easy to overlook the insidious and potentially serious side effects, of which bone loss is just one.

    I have been taking pred at various doses for many years, usually at doses of 10mg daily or below) but the last couple of years I have consistently taken between 10 and 30 mg daily. I am 44 and a bone density scan last year confirmed that I now have osteoporosis (and I have fractured my ribs twice in the past year or so). That said, I was already a walking list of osteoporosis risk factors (RA, very early menopause, long term steroid use, enforced incactivity) and I had lowish bone density to start with but the drop in bone density shown in my last scan was dramatic compared with the scan from just a couple of years before so I am convinced that it was the high dose steroids and inactivity that caused things to deteriorate so rapidly.

    Steroids above 10mg daily make can make me quite depressed and doses above 15mg have me literally climbing the walls. My heart races, I can't sleep, they increase my blood pressure, so I take medication for that too now, give me dreadful cramping in my calves when I walk. I have the classic "steroid looks" of moon face, severe stretch marks, very thin skin, easy bruising, poor healing and early signs of cataracts (which may or may not be steroid related).

    Having said all that, I am still taking them, and currently at an increasing dose while I am waiting for my next dose of Riuximab but, as soon as that is sorted, I want off them (or at least a much lower dose).

    You are right in that there are meds available to help reduce bone loss - I started taking one of these many years ago but stopped because of the hassle factor at the time (probably not, in retrospect a good decision). But these drugs themselves are not without risks and they can be positively evil on your insides. They are also expensive and my understanding is that, because of recently discovered additional risk factors, they are no longer as widely prescribed as they once were. HRT is another way to protect your bones but is not usually considered appropriate as a "first line" osteoporosis prevention med, and, again, there are significant risk factors to consider.

    Not sure really where I am going with this except to say that I was very much like you - I had to stop meth and was of the opinion that the pred was helping so I'll just continue to take it. But I was also, I think, ahead of you, in the sense that were really very few more DMARDS left for me to try because I'd had most of them over the years and the anti-tnfs had not yet been invented. But given that the Enbrel is really helping you, it sounds as if it might be worth giving another DMARD a try alongside to see if that is enough to "top up" the Enbrel. It may be that one of the milder DMARDs could be enough to help and you would then not have the risks associated with the pred - or, at the very least, you would hopefully be able to reduce the dose.

    I know it's a difficult balancing act, but my view is that, if there really is an alternative to pred, you should grab it with both hands. And in the meantime, do make sure you are taking high dose calcium/vitD pills and getting as much calcium in your diet as you can. Also any weight bearing exercise you can do can really help increase your bone density. When, a few years ago, I was doing a job which required me to be on my feet a lot (those were the days) my hip bone density improved dramatically, so it really can help.

    Really good luck with whatever you decide.

  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00

    Tilly, it's lovely to see you posting again. I really miss you when you're not here. You always talk such commonsense (unlike me :roll: ) and without a trace of self-pity (also unlike me :oops: ). I'm sorry things have been rough for you and I hope for better days to come. Will a few of these help ((()))?
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Thanks so much for your responses, people :D

    Hmm… sticky, 'charming, seductive monster' sounds like my kind of medicine! But on a serious note, I've been doing a bit more reading up on side effects today so I acknowledge it's not ideal long term. I need to weigh things up a bit better, I think. (And no worries re. hijack, by the way!)

    Thanks, Mr DJ, for sharing your experience. When I was introduced to steroids, then in the form of intramuscular injections and occasional intravenous use, I wasn't told much about the side effects either. Like you, I didn't care because I felt so much better. I put on a bit of weight when I started on pred at 30mg daily, but that was okay because I was just out of hospital and very underweight at the time. I'm so sorry about your eyesight and thanks for the heads-up about blurred vision. That's something I'd worry about as I'm a freelance editor and I need to stay beady!

    Aprilann, I'm sorry you've had a rough ride too. My doc has prescribed 1mg pred tablets today so I can come off it very slowly, 1mg at a time. While I've never suffered depression, I did find myself quite uncomfortably euphoric on the higher dose, not sleeping until 2am only to wake up bright as a button four hours later and overflowing with grand ideas. It was a strange time for my nearest and dearest. And the other side effects you're experiencing are exactly as my doc has warned me. I hope you're not in too much pain xx

    jane, yes, a short fix seems what the doc would order in most cases and I'm glad you're better able to deal with things now. Chronic pain's enough hard work without medication bringing you down even more! I hope your stiffness eases soon xx

    Thanks for your post too, DD. It seems that you were well and truly seduced by the monster, so well done for escaping its clutches! No one's ever mentioned alendronic acid to me; it sounds a bit of a nuisance. You're right about weighing everything up; my trouble is I tend to get a bit stuck in the moment, just dealing with pain on a daily basis, with little energy left to consider what lies ahead. And when the moment consists of debilitating side effects of DMARDs, much worse than anything arthritis has ever thrown my way, it's hard not to embrace anything that does seem to work and that allows me to enjoy my life. Maybe making a list would help put things in perspective...

    And lastly – with apologies for the length of this post! – thanks Tilly for sharing your experience too. I'm so sorry that osteoporosis has set in so young and it does seem that the combination of steroids and inactivity is most likely responsible. I hope you won't have to wait too long until your next dose of Rituximab. As for meds to reduce bone loss, these sound a bit daunting. No one's mentioned HRT and if I'm anything like my mum I won't begin the menopause until well into my fifties. In the meantime, perhaps I should try to stay hopeful about finding a suitable DMARD as I haven't tried them all just yet. I'm due a hospital appointment next month and hopefully my consultant will have a few ideas for the way forwards. I'm taking Calcichew D3 Forte twice daily and although I've been diagnosed as lactose intolerant I have no trouble with cheese and yogurt. Weight-bearing exercise has become close to impossible since a careless hospital technician shoved a chest X-ray machine into my right foot and landed me with a permanent valgus deformity of the right knee (there's a story), but I shuffle around on my crutches as much as possible :D

    Thanks again to everyone for their responses; much appreciated!

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