Prednisolone

km89

Hi,

I've only been diagnosed with RA for about a year now. I was wondering if prednisolone is part of everyone's treatment long term or have you been gradually weaned off it? The only reason I ask is that my rheumatologist said last time I went to see her that she want to get me off the steroids (currently on 7.5mg daily) as soon as because I'm quite young (21), as it can cause your bone density to decrease among a long list of potential risks if you're on it long term.

Also, to those on the anti-TNF drugs too, do you still have the need to take the steroids as well? It's just that I'm hoping to start on them soon as the triple therapy I'm on (mtx, sulpha and hydroxy) and wondering if it'll work well enough to come off the steroids completely.

Sorry for all the questions! I'm a bit of a newbie to RA and I don't know anyone else who's got it. It's been really insightful reading everyone else's stories and treatments, pleased I found this site, don't feel as bewildered about how to cope with it as I did before

Katie

Poppyg1rl

Hi Katie,
Welcome to the forum, I've found it to be full of very friendly, kind and knowledgable people, I can honestly say I found out more about my condition (I have PA) and how to treat it on here than anywhere else re steroids, I only ever have the depo med long lasting steroid injections, my Rheumy has always been very against me starting tablet form. I am on Methotrexate, Sulfasalazine, Humira (anti TNF) celebrex and still need the tramacet as elbows, knee and broken wrist take it in turns to vie for attention I do know of other forum members who are trying to reduce their steroids and are doing a wonderful job, steroids are not easy to come off.
I'm sure someone far more knowledgable than me will be along soon to help answer your pred queries.
Nice to meet you Katie, hope you are as painfree as possible
Hugs x

julie47

Hi katie

I started with ra when i was 25 (48 now) and at that age i had a dose of steroids too. I can not remember the name but I too remember having only enough to last a couple of weeks...reduced them every two days.

I have never had the tablet form again but I have had the intamuscular kenalog a few times in the 23 years. (but only when i am desperate)

I am now on mtx,celebrex,leflunomide,hydroxy and paracetamol and it seems fine for me. Havent had a inj for a couple of years.

I wish you luck with your steroid reduction, and hope that your meds keep arthur under control.
Take care
Juliepf x

dreamdaisy

I love them. I have the little red ones, the little brown ones and the little white ones. They are the only things that help me 'feel' better and help me cope, so for that reason I am devoting this year to getting off them. Actually take something that helps? How bl**dy stupid is that? :roll:

I have been on them for over four years now, at relatively low doses, but because of the inhaled steroids I also use to help the asthma my exposure to them has probably been much more than I realise. I have to take a weekly alendronic acid tablet, which involves some malarkey and makes me feel sick for a good six hours, so I wouldn't mind dropping that and the only way to do it is to stop the steroids. Having been on them for so long I reckon my body has forgotten how to make its own version of this stuff, hence the long, phased withdrawal. It has to be reminded. I hope it is.

I was put on them after enbrel tried to explode my liver - I was taken off everything (except the sulph, I think) and ended up in bed for three months. The little red pills were a last resort from my Consultant and how I wish she had never, never allowed me to have them. When I began the humira in July 09 I was told I would be able to drop everything but the meth, and I would lose the crutches. I now regularly walk for miles, run the occasional marathon and do the can-can daily. Not.

I still flare, have not dropped any meds and have, indeed, increased the strength of the pain dullers. The only pills that fill me with mild dread tho is the steroids. And that is because they do cause serious, long-term damage, enough even to fret me.

I have had the injected form too but they have never done anything. My knees and right ankle were drained and steroided about two weeks ago, there has been no cessation in pain and the left knee has started filling again. I am now on 10mg of oral steroids per day, I was supposed to drop to 9 yesterday but as I am fighting a bug of some sort I won't drop, not just yet. Every fibre is screaming at me to return to the halcyon levels of 20mg, but I will not. It's usually the hospital's answer to things to. 'Up the steroids, Daisy, they will help but don't forget we want you off them.' is what they usually say.

I have been playing this game a damn site longer than you, and indeed went five years without any treatment as no-one recognised I had arthritis. Your situation is very different to mine but I would urge you, seriously, NOT to go down the steroid route. Do without for as long as you can. They are insidious, gorgeous, seductive, wonderful little pills but all that loveliness is more than matched by the long-term harm. I wish you well. DD

scattered

I was put on steroids before I was dx'd and it's taken me 4 and a half years to nearly get off them. Now we've got my meds sorted (inject. MTX, Humira, hydroxychloroquine) and my disease in under control I've been slowly working down. I now take 1mg every other day. At the end of this month I'll hopefully be off them for good. If offered the prednisolone tablets again I will not say yes unless there is a reduction plan in place. They are a great short-term med, but awful for the long-term. They end up causing more problems than they solve.

So, in answer to your question: yes, when your disease is controlled enough you can come off them. I hope it doesn't take too long for you.

km89

Thanks for all replies. I really want to come off the steroids so it's encouraging that some of you are coping ok without them. I managed to get down to 5mg every other day at the start of the year but one of my blood tests came back with a high ESR value again, suggesting that the methotrexate wasn't working as well anymore. Since then I've been put on sulphasalazine and had steroid injections in my knees and had my dose upped to 10mg. Although, I haven't seen that much benefit in the level of swelling I have in my knees, and the slight improvement is probably due to the steroids. They're quite deceiving! When I think the DMARDs are working, I try a reduction in the steroid dose and I'm back to square one again. So frustrating. Hoping the biologics will solve the recurring problem of the fluid build up in my knees as I've not really had a problem with pain which I see is quite a big aspect of other people's experiences of the condition. I just have a lot of swelling, to the point where it's difficult to walk up the stairs etc.

Ta for all the feedback, much appreciated.
Katie x

cherrybim

Hello Katie, pleased to meet you.

Please, please try not to go down the steroid route.

I'm old, 66 and my OH is 68

Steroids for asthma since he was 25 have given him the most devastating osteopororis. His broken bones over the years have actually meant that they break through the skin, blood everywhere. That is like a horror movie, believe you me I would never like anyone to go through the same thing if it can be avoided by the cessation of steroids.

Alendronic acid has been withdrawn here too because several old peeps have died from the effects of the stomach bleeding caused by them and indeed my dentist wouldn't treat me whilst I was on the tablets.

I can be cocky and say that cortisone for me has never worked. Rheumy 35 years ago said he might as well have given me smarties for all the good that cortisone did for me. However I have seen and still see the the devastation it can wreck and I urge anyone who takes it to think again.

Cherry

carola

Hello

Amongst many other meds, I am on Pred, Methotrexate and Hydroxy the same as you.

In March last year I started Meth then in July added Pred and Hydroxy into the mix. Only 7.5 of Pred to start with and it worked like magic. However, I need to see if either the Meth or Hydroxy is working (if any) so slowing been decreasing my Pred and now take 4mg daily sometimes 5mg if feeling a swelling and pain.

Even taking this low dose of Pred has puffed me up like a big puff. I was surprised at this however my Rheumy told me that everyone reacts differently so this is a huge incentive for me to get off my precious Pred and face up to the other meds.

Good luck with it all.

Carol

dreamdaisy

Oh what a lovely phrase, 'my precious Pred.' It is, isn't it? I know it will take at least a year to get off them and I WILL get off them. They are the only things that make any noticeable difference in how I feel and in how the arthritis behaves but the long-term effects are far, far worse than those of uncontrolled arthritis (she says, gamely trying to convince herself of that).

It annoys me so much that the hospital's first answer to any problem is 'up the pred'. NO. NO. And thrice NO. It's a short-term fix to a long-term problem. At least I know that now, and that fact, hopeully, will be the spur that I need once I get to the gritty end of this business. That'll be around September time, when I should be down to about 4mgs, all being well. I am not looking forward to that. Not really. DD

He1en

Hi Katie

I have been taking steroids everyday for the last 16 years and have only just managed to get down to 6mg. I first started them aged 8 and was put on 60mg daily!!! Back then - there was no anti TNF Therapy around so Steroids were the only option that could tame my Flares. I have had 3 hip replacements due to bone deterioration thanks to the long term taking of Steroids.
However I was put on Resideronate?? around 7 years ago and this has definately helped my bones, and I take Calcium tablets.
I have been taking Etanercept and Methotrexate injections for the last 7 years and this has helped me to reduce the dose. I have been prescribed a very slow reduction programme for the Steroids because in the past whenever I have tried to drop the dose it would set off a flare.
I still notice the drop so I guess my body is addicted to them but I am determined to get off them.
My advice to you, like the others is to try and avoid taking them because of the long term damage they cause - and as you can see with me - the longer you take them for, the more difficult it is to get off them!!!

Good luck
From Helen x

km89

Wow, I didn't realise how serious the damage could be from taking the steroids long term.
Also like you said Carol, I've puffed up too because of the steroids, especially in my face. Adds to the incentive to get off them. Ughhh.

Katie

tiggernut

Hi katie,
I was put on predinisalone when I was about 31 and was on it for 10 years on around between 10mg and 7mg. I was unaware of the long term damage.
I am now 56 and have osteoporosis. Sadly I am now back on it and have been for about 2 years because I have methotrexate but kept getting chest infections so my Rheumatologist cut my methotrexate dose from 15mg to 10mg and boosted it with 10mg of prednisalone.
If you can get away without it then I would. I have cut mine down to 5mg and I will be cutting down again in the hopes of getting off it completly.
Anita.