This will be quite a controversial post I guess, but my question is " at what age would you be prepared to use pred as a first line drug for RA and OA with the intention of remaining on pred for life"?
Reason I ask is that I'm 64 next week, have had RA since 1983 and am currently on Rituximab ( although it's early days). I've been really struggling over the past 6 months and finally the consultant agreed to a course of oral pred. Well, 5 days later and I feel like a new woman even on only 10mg a day. My RA and OA are 90% improved, I've not had to take amytriptilene or one of my daily doses of coedine
I know all about the effects of steroids as well as the effect that some of the DMARDs and biologics can have so hence my question.
At what age, if at all, would you be happy to take pred on a daily basis to manage the disease and live with the consequences further down the line?
For me it would be about now to see if I could get 10 -15 reasonably good years and bugger the consequences. I'm not interested in living till I'm 90 if I'm going to be in pain every day.
It would probably be a lot cheaper for the nhs as well!
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Maggsie
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As a RA, OA and Vasculitis sufferer, I have been on high dose Pred for a number of years (reducing gradually now thank goodness) I also have Osteoporosis wirh spinal fractures. I would NEVER willingly go back to taking Pred for the rest of my life. I can't bear the thought of suffering with the pain of constant fractures on top of RA flares and OA flares. Thanks to Pred, I am housebound as even walking across the room has me doubled up in pain.
I could not cope with the symptoms of my active RA (I'm sero positive) or live independently without oral steroids at the moment and have been on them for 6 months whilst trying to find a treatment that works for me. I'm also on Rituximab since May/June and it's starting to work but I'm not ready to stop taking the Prednisolone yet. My consultant agrees that it's too soon for me to start on a taper reduction programme.
Yes I'm suffering from some side effects of taking steroids: "moon face", weight gain, thinning skin, easy bruising, itching, extra hair growth and, potentially putting myself at greater risk of osteoporosis. I am willing to put up with these for the benefits the drug gives me and will continue to do so if my consultant thinks it appropriate to control my symptoms.
I agree with you that the prospect of fewer years with a better quality of life matters more to me than more years in constant pain. And anyway, I've already outlived my dear Mum who died from breast cancer at age 62!
So, to answer your specific question, now at age 66 if it's necessary!
My thoughts exactly, I don't have any osteoporosis, my bp is a bit high but under control and I just want to have a few years feeling nearly normal 😊
Very interesting question Maggie, as I’ve just turned 63 and been asking myself the same question. Firstly, it’s a very valid question to ask, so thank you.
Some things to consider:
1. The current status of your bones, and your ability to do “bone strengthening” exercise to help maintain bone density. So getting a scan for your bone density should be a priority.
2. The other health issues, such as risk of diabetes, moon face, weight gain. Problem is, there’s lots of research into how bad Pred is for you, and little research that relates to people who’ve done well, with minimal issues (though, I could be wrong).
For myself, I’m seeing a new Rheumy this Friday, after giving up MTX in April and getting totally peed off at the last Rheumy who said that my increased dose of MTX couldn’t possibly be the reason for my extreme stomach upset - on which I call #BS. My haemoglobin had been dropping as well. So, 5 months later, had no illness since stopping MTX and haemoglobin back to normal. I don’t have any other options for drugs, my RA is quite mild (no biologics then) and I’m allergic to SSZ and Hydroxy - we’ll see.
So, have the conversation with your Rheumy, all the best, cheers Deb
Thanks Deb, I don't have any osteoporosis or diabetes and when taking the low dose pred I can certainly get the exercises done. I just feel that maybe a well monitored and organised pred regime might better serve me than the huge range of prescribed meds (biologic, mtx, coedine, amytriptilene, fenbid gel) and supplements, supported by very regular steroid injections into deteriorating joints, which leave me with a poor quality of life and in constant pain.
I'll let this latest biologic play out to see if I get a great outcome but if not, the conversation will need to be had.
You might like to look at the possibility of using prednisolone in a low dose with the 'steroid sparing' azathioprine. (This is what I have been on after having problems with DMARDs and not being eligible for biologics without coming off steroids.)
There are, of course, disadvantages as there are with any medication that actually works.
But I don't have any problems with osteoporosis or diabetes, and I would probably think differently if I did. And the side effects that I have are manageable for me.
Thankyou.! This really helps. I'm going to stick this Rtx biologic for a bit longer to see if it can give me a better quality of life but if it doesn't work then I'm definitely going to have the conversation regarding low dose steroids.
I’m on your side with this one! I’m 64 and had RA for 22yrs took steroids off and on all these years without any major side effects ( only a little weight gain and rattling from the ceiling on high doses lol!) Quality of life comes first! its finding a balance between suffering unnecessarily and keeping side effects to a minimum, these meds are there to help us and keep us functioning on a daily basis, I’m up for that!! 😜🤪😍🤗X
I have thought of this question too,and I’m only coming up on 54yrs.when Pred makes me feel more like the days before ra,its easy to say quality of years over quantity just to feel normal again.but as my rhuemo nurse has said it’s not stopping the ra activity and not a good idea as there’s too many side affects and I wouldn’t be thinking the same 20yrs from now.she said years ago people were given long term high doses that eventually made many people’s health much worse.so for me the next step is biologics on top of my mtx and sulfasalazine.she did say she would withdraw my prednisalone very slowly.i’ll keep my fingers crossed.
Your Rhumatology nurse is correct as the steroids do just smother the symptoms of RA, but as far as side effects this is where we are all different! Some suffer extreme effects, and others have minimal effects. My bone density scan was very good for my age and I have taken a list as long as ya arm of rhumy meds and steroids over 22yrs. I’m currently taking 4mg Baracitinib and 12.5mg steroids reducing until I’m comfortable with my pain level and have to say it’s serving me well so far. 🤗 x
Maggsie, a really interesting question. I'm just approaching 3 years of being unwell. Four failed DMARDs and I'm now looking like my second failed biologic due to intolerance and side effects.
I feel well on daily prednisilone, which I've been taking for 17 months at varying doses (lower when on DMARDs) and have very few side effects with. A recent DEXA scan came back normal, I'm not diabetic my BP is a little on the high side normal, but controlled with losarten, which helps with my neck problems too.
The DMARDs make me so unwell, they are just not worth taking, so what's left ? A few good years, I'm 60. Or no life at all ?
I agree angelmar,I know everyone’s side effects will be different and I know for sure that when I’m on the Pred I feel my old self.would just be great if Iwe had a crystal ball to see how long term they would affect us.
A really interesting question as the general thought is (i read) is to get off prednisolone as soon as possible. I'm on methx 20mg, sulph, hydroxy, usual folic 6days a week and...1grm paracetamol & 60mg dihydrocodeine 4 to 6 hrly, losartin for bp and lanzoprazole. Have had some joints aspirated and injections into joints...plus...I'm now on 5mg daily of prednisolone which I have decided that I will stay on. Untill taking the prednisone I had about 4 to 6 hrs a day where I could function (after over a year) that's now expanded by 2 to 3 hours. Dexa scan ok. My rheumy says it's ok to be on all this. The main issue I have is my weight. Im 61 now was 58 when diagnosed. Do I want all these meds no, but the one that has helped me function is pred. So at my age I go for quality of life. So your question is one I've answered for myself most recently. I appreciate this would not suit everyone. I would be interested to know what you choose to do.
Quality of life anytime! As I said in my previous post I’ve took lots of meds over 22yrs, lots have failed, some have given me a few good years until they waned with time, but, like you the steroids have always see me through the worse and still do. I can live with the extra weight and moon face as long as I am pain free and more mobile to live my life. 🤗 X
Never would be my answer. I was on oral pred from the age of 14 for 12 years. In that time I developed cataracts at age 17 and had to have both my hips replaced at age 25. I suffered from weight gain with a massive moon face and extra hair growth, along with night sweats, bruising and easy bleeding. Steroids will reduce swelling while taking them but as soon as you try to reduce them the pain and inflammation begins to return. They can also cause a potassium imbalance as well which caused my Granddad to pass out at my aunts 50th birthday, therefore needing an ambulance. They also suppress your entire immune system whereas the biologics are more targeted to the specific parts of the auto-immune response. In your 60s you are already at a higher risk for OA and steroids will increase this. I would think very carefully and discuss this with your rheumatologist.
Hi, you may want to take a look at the PMR site. Prednisolone is the only medication that can really manage the disease so some people have been on it for years. I am 55 and have only been taking pred for 18 months but I could not have managed my normal day to day life without it. I am only on 4mg daily at the moment and I do hate some of the side effects but it is far safer than the effects of unmanaged inflammation in the body.
I have been on 10mg for 7 years.tried to reduce teeny teeny bit but in agony and ft so ill.I am 61 and to be honest would rather be in less agony now. Even if not on prednisolone I could fall and fracture bones.I know people not on this with osteoporosis
Absolutely agree, I want to do things while we're both young enough to enjoy it
Whilst being treated with high doses of steroids for severe asthma, my late husband suffered a very unpleasant personality change as well as the many physical symptoms mentioned. I would keep intake within guidelines for RA ie listen to your consultant. It causes us to feel soo much better but down the line ... My grandparents lived to be close on 100 years despite both RA and OA, both of which I now have. I am eight years older than your 63 and am not planning on giving up on any ambitions that aren't prevented by my illness ie learning a language has become for joy to me! (Free on the Duolingo app)
I have been on and off prednisone 20years in later 5 years more on than off I like you would pick quality of life any day I’m 62 I admit in early days to not knowing of side effects but now I do I have no choice but to be on steroids daily as my adrenal glands don’t function due to using prednisone so long I have to monitor my body’s intake of cortisone by taking hydrocortisone twice daily or in a really bad flare I’m put back on prednisone I have had cataracts done I have osteoporosis I walk doubled, knowing this would I take it? I have to say yes but I’d be more aware of amount and be aware of side effects I agree they mask other illnesses and symptoms but without any quality of life and constant pain the mind can take you to places you don’t want to go and depression is a horrendous thing to live with too So if I was starting in your shoes making an informed choice and doing research on the prednisone I would go for it as like you say at 62 another 15 years would be great I don’t want to be 90 either sitting indoors in pain feeling down Quality of life sounds much better good luck
I'm with you Maggsie. In fact I'm going to discuss this very topic with my rheumatologist and September. I've already written to him in advance. I'm 58, and totally fed up of meds not working and making me feel worse. Steroids work for me.
I want quality of life now. Not interested in living a long painful life.
My Father was on this for RA and was told by the doctor that he had a choice, quality of life or quantity. He chose quality and died a peaceful death. I know what I would choose.
Having erosive RD for 34 years, I was 40 when this suddenly came on, my main treatment was steroids, oral and including injection into hands, fingers, feet toes. I was in hospital for a month for tests and bed rest. I had over 100 injections in that short time. I also was put on Azathoprine, voltarol retard. I was first of all dx with lupus, this changed over the years to sero-negative erosive RD with several ops. 14 years ago I was put on Humira and this was a wonder drug for me. I wouldn’t come off my 5 mg of pred though. My quality of life was much better. I also have OP. I now have severe spinal stenosis with the collar of the vertebrae on L5 fallen on to L5 attributed in part steroids. I have very thin skin and had 3 small skin cancers, glaucoma and my cataracts done. B12 and folic acid deficiency. I am waiting for a back op and the last two years have been a trial. I do wish I had come off steroids when it was clear Humira worked for me. X
Maggie I've read your post and the answers I dont know the best advice to give you but what stands out is how people seem to think being in their 60s is old I'm RA OA PMR I feel you are never old enough to die I'm desperate to get off steriods after 2.5 years I'm nearly there I hope I never have to go on them
I have been on needed prednisone daily for 9 months while waiting to find a RA drug that will work for me! Still Waiting even when the Dr brought out the big guns, IV INFUSION (Acterma) and even that is NOT working!
Prednisone has destroyed my body in 9 months!
I have the dreaded moon face, two giant fat pads growing off both sides of my neck, have massive fluid retention and now need another drug Lasix to combat that, Need high blood pressure medication now as well. Gained 25 lbs on my very small frame which is very noticeable! Had to get new shift dresses for work! Shift dresses!!
However without the prednisone I would not be able to get out of bed and get to work. The 9 month long very painful flares in wrist, elbow & shoulders is just to much to bear without the prednisone.
What can I do?
I am doubly poisoning my body. Biologicals that are not working & prednisone!
Believe me I want off this 20mg per day prednisone and every time I try to reduce the smallest amount the flares come back with a vengeance!!
I am 59 yrs old and stuck between a rock & a hard place!
I am 69 and have had RA and lupus for 30 years. Initially relatively mild but the last 15 very severe. I've had the usual range of drugs over that time but the only one that gave me any relief consistently was prednisone. I had several severe flares that needed short term high doses but have always reduced as soon as possible to 5mg daily. Methotrexate nearly killed with severe reaction and I'm not allowed to take it again. I started on enbrel 6 years ago and that was a totally life changing drug ( sadly not quite so good since it was changed to benipali) but every time I stopped prednisone I would have a flare up. My rheumatologist said to maintain a small daily dose of pred as part of maintenance procedures. I've reduced it to 4 a few times.
I've also got OA and osteoporosis and have a lower back fracture, but my mother had it far worse than me without any steroids so I'm told that whilst prednisone didn't help I was genetically inclined to get these anyway.
I also had cataracts at 60 but again I was at high risk as I was extremely short sighted and mum had the same, without steroids.
I think each individual has to weigh up the pros and cons with this drug. I know for me it's enable me to live as normal a life as possible and has definitely given me the extra help coping in the bad times.
Interesting, I was well controlled on Enbrel for 14 years until I changed to Benepali , then everything went downhill. I went back on enbrel and gave it another 8 months but it was never the same. I'm now on Truxima and mtx but am really struggling. This short course of oral pred had made me feel a bit like my old self again.
It's interesting your response re enbrel /benepali. I'm due to see my rheumatologist in September and I'm going to ask to go back to enbrel as apart from it not appearing to control things as well I'm also getting severe headaches the day after injecting. My anti tnf nurse said last year that it may be that I'm no longer responding as well to etanercept and a complete change might be needed. A difficult time as I don't want to go back to how I was pre enbrel. I will have to see what he suggests. I've been with now for 12 years and feel I can trust him. From reading some of the posts on this site I realise how lucky I am from that point of view.
I hope the responses from this site have given you some useful information.
Hi Maggsie, on top of weekly MTX and Benepali injections, daily co-codamol and Hydroxy I have a general steroid shot in my bum every three months and that regime seems to be the combo that works for me. I can’t take oral steroids because they turn me into a suicidal psychopath but the injections don’t . I know it’s not ideal to be on so many drugs but I’m 62 and have come to terms with the fact that needs must. Rheumy team are happy with 4 steroid jabs a year, but not more, so as long as they keep working I will keep taking them! Short term thinking maybe, but that’s how I get through my days!
Thanks MM, you're right it's a case of needs must and at our age we should be trusted enough to be part of the decision making. I expect my medics to tell me the risks and rewards and then let me choose but sadly this is not usually the case.
Hi Maggsie, I was told when 1st diagnosed that I'd be in a wheelchair in 2years & the Doc wanted to put me on gold injections. I was then aged 34 & didn't find this acceptable, so went off & did Homeopathic for 5years. Unfortunately my hands were damaged in this time & my swollen joint damage isn't reversible. I was then put on Prednisolone & Methotrexate which served me well & helped keep me working full time for over 20years. Yes I put on weight & had a moon face &, as 1 nurse very unkindly pointed out, a 'buffallo back" (fatty lump at base of neck). But the main thing is I chose to take the medication so I could live a more normal life,work & bring up my daughter & more importantly walk! That was the choice. I have since come off steroids, lost the moon face & nearly lost the buffallo back & did lose 2.5stone in weight with dieting. But with age (65) & a broken leg I have sadly piled all that weight back on! But my bone density scans had been ok for years, after a scare early on, which resulted in my being put on Ibandronic acid tablets to build up my bones. I've been on them for over 20years without a break. 'Nice' now suggest taking for a max of 3-5years & having a 2year break. I am a victim of the small % of women who have an adverse reaction to Ibandronic acid, whereby the bone thickens in the femur & you can get fractures. I had 2 fractures in my left femur, which I knew nothing about, that had healed themselves. Recently I had a slight fall which shouldn't have been that bad, & broke my right femur, which is now pinned. I am still recovering & it has been very painful. I'm back on my Biologic Adalimumab (Orencia) injections now the incision scars have healed. But I'm waiting for the results of a Dexa scan to see if I've got Osteoporosis. Be aware too that this can affect you're travel insurance cover for breaking bones!!? So to all those ladies out there on Ibandronic or Allendronic acid calcium boosting tablets-make sure you take a break after 5years max!! If you've been on either for longer I would suggest requesting a bone density scan.
So Maggsie I'm sure you will be allowed to reduce you're Prednisolone dosage as you're symptoms improve, that's the only way to manage it if you need to take steroids in order to have a quality of life & be mobile? Good luck with it & I hope you're RA improves-there's nothing worse than enduring the pain non stop & being housebound. For me it was a 'no brainer'!?
Hi since 1979 I have rarely been off Prednisone. I have been on Tocilizumab for ten years but still need the Pred. I have paid the price with thin skin which tears easily. Life becomes too difficult without it. On a prescribed maintenance dose of 10mg but have come down to 7mg.
Personally I'm a fan of Prednisilone. I find it to be more beneficial than MTX, etc. Every time the various Consultants I have seen have advised me to ween myself off steroids my health has suffered. In addition to RA I also suffer from Type 1 Diabetes, Antiphospholipid Syndrome, COPD, Heart disease, Osteoporosis, and various gastric problems. I honestly believe that none of these conditions, including Osteoporosis, has deteriorated as a result of my long term use of Prednisilone. I will quite happily stay on it for as long as possible or until it is conclusively shown to be harming me.
No age for me. I was on Prednisone for 3 months straight for the pain. The plan was to stay on it while on MTX until it started to work. However, Prednisone does not stay the same as days go on. It changes and I had gained almost 60 lbs and felt awful. I refused to take it and stopped once I winged myself off. I do not think it is a safe medication for long term at all at any age. It is meant to be short term. It is just not safe. That medication can cause problems that I did not even know about. It can even effect your brain.
The question of the ages! It’s called the devil’s drug for a reason... it gives the relief we so desire but with a huge gamble. I’m 45, diagnosed at 34. I’m on my 7th biologic and desperately trying to wean off my steroids. For a long while I was taking 8 mg of methylprednisolone, medrol in the common name. My adrenals have shriveled and am now working with an Endocrinologist to treat my Secondary Adrenal Insufficiency. I am struggling mightily trying to get the adrenals to work by slowly, very slowly, tapering. Unfortunately, Medrol is the one thing that has kept me sane and functioning somewhat. I’ve been plagued by intolerances, allergic reactions, or no help at all by everything we have tried.
For me, having children yet to raise, I chose steroids so I could function to some degree and be engaged as much as possible. I kept my dose between 4 & 8 mg unless coping with a flare. I don’t think the choice is an easy one. If I weren’t getting any relief (finally) from Humira, I honestly don’t know what my choice would be. I’ve seen both sides of the coin and both are ugly. It’s a very personal choice but I suppose we each have to make that choice for ourselves.
Hugs and best wishes, my advice would be to keep your dose as low as possible, always.
Thanks for your response. I'm so sorry to read that you've had so many problems with meds. I've been lucky I suppose in my 36 yr history that most of the drugs I've tried have managed to give me a reasonable quality of life. Perhaps I'm just spoiled 😊
But in 3 years I've gone from working full time to having to be helped to dress and shower myself as well as having very poor mobility.
Hope everything continues to go well for you with Humira. Best wishes
Hi I started on them when I was 18 I'm now 57 they have helped me so much, I've been on lots of drugs since I started but now I'm on a low dose of 3mg daily pred and take leflunomide, hope you feel better soon.
I’ve got to say this is the best post I’ve read recently !! I absolutely know where you’re coming from. I have been put on baricitinib 2mg and between 5 & 10mg of prednisone until the baricitinib starts to work. Every time I’m taken off pred. I flare and go back to not being able to walk, dress myself and barely function. I’m 55 but I’ve had no treatment for the last 6 years until I got a new fab consultant, my immune system is in the toilet and will never recover but I’ve got to the stage that I don’t want to live my life any longer in constant pain and disability so if I’m given a choice I will be asking my rheumy the same question as you, can I have low dose steroids long term so I can have a decent quality of life without being in so much pain I can hardly function. It’s a personal choice for everyone and until a cure is found for RA I’m sure I won’t be the last to make it. At the end of the day I’ve outlived my mum who was only 43 when she died and I was only 16. I’ve still got a lot of life left in me but I don’t want to be housebound forever so quality not quantity is where I’m at.
Interesting debate & amazing to hear what different people have to live with. I was diagnosed with Lupus in approx 2000, which eventually hit most of my internal organs over a few years. Also my muscles& joints. I also have RA, vasculitis & Dermatomyositis. I developed Bronchiectasis & osteoporosis. I’ve had to take steroids for 17 years & I did put on lots of weight, gradually& it has had the usual effect on my skin etc but, thanks to steroids & biologics etc like Rituximab, I’m still here.
I would recommend reducing the dosage of steroids any time you can, to reduce the somewhat inevitable side effects. Good luck everyone 😁
My rheumatologist agreed to let me have 2.5 mg daily. It helps greatly. I am early 70’s. My cousin is late 70’s and takes and swears he has been taking prednisone 5 mg daily (10 when he knows he will need it) for 20 years. My son helped me make my decision when he said if it helps my quality of life at my age to go for it. So I did! Good luck with your decision. It’s hard with medications to know what’s right.
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