Long term effects of being on steroids?

[Nadine_K]

I am new to the forum and would like to know the long term effects of steroids.

[ukgospeldiva]

Thin paper skin that 'tears' and brittle Bone disease

[ukgospeldiva in reply to ukgospeldiva]

Oh a greater increase in becoming diabetic, bloated moon face and propensity to put on fat around the tummy.

[tremarel]

Skin paper thin , bruising been on them for 40 years mind. They have saved my life many times so hey can't complain !

[ukgospeldiva in reply to tremarel]

Yes there's always a trade off?

[Wendy39]

Hello and welcome. This is a great site. I think we all have a love hate relationship with steroids here. Steroids can cause bone density issues, thin skin, kidney issues including diabetes, bruising etc. It depends on what dosage you are on and for how long. Like tremarel says steroids save lives where lupus is concerned. So it has a very important role. It is anti inflammatory. I've had 2 x five week courses of 20mg for two weeks and then 3 weeks tapering down. Those were the best 10 weeks for me, quality of life wise, in about 4 years. I don't think short courses like that, will cause many side effects worries. As a result of those two successful courses I am now on MMF, which is known as a steroid saving drug. My new Rheumatologist has told me that for future flares I can take 5mg for 2 weeks and taper over a further 2 weeks, so a month at a time. But he wouldn't want me to be doing this too often and would prefer a month off in between steroid courses. Doctors often prescribe Vitamin supplements to help protect your bones if you are on steroids long term. But like I said, we are all different here. We all experience slightly different symptoms or combinations of symptoms. No two lupies are the same and no two treatment plans will be the same. It might be helpful for you to give us more information about your situation and why you ask the question. Have you spoken to your doctor or rheumatology nurse / lupus nurse about this too? Kind Regards, Wendy

[PMRpro]

Depends on the dose and the person. I have been on pred for nearly 8 years, much of that at between 10 and 15mg - and at present I would say I have no side effects at all. My skin is tough as nails, if I bruise it is more likely the anticoagulants I take, I gained weight with one sort of steroid and lost it all again on a different sort and by cutting carbs drastically, I have no cataracts and no sign of diabetes. My bone density has barely changed. My BP is raised due to something else and well managed.

Everyone is different - but most of the side effects can be managed if you know how. They can be horrible - but they can also give you your life back.

[happytulip]

I'm in a difficult position with this right now. I am under so much pressure to reduce my prednisalone from my specialist nurse. I am best at 17.5mg. I can actually function, as in live and be independent. Recently I was put under pressure to reduce because of the long term risks of steroid use. I tapered very slowly by 0.5mg every three weeks. I was doing well, then bam. As predicted I landed up getting pericarditis for the 4th year running. I've been bed ridden since Easter but have increased my pred from 15mg to 17.5mg in the last 72 hours and have been up and pottering lightly around the house today. This is a cycle that seem to repeat itself every time I drop to 15mg.

I hate the weight gain, hair growth and moon face but surely it's better to be up and mobile and able to go for gentle exercise than be totally bedridden with an elephant sitting on your chest in total agony.

What about the risks of diabetes and heart disease. Those are the ones I'm worried about but in all honesty isn't it more important to live and take some excersise than be immobile?

[PMRpro in reply to happytulip]

Me too HT - I'm a jam today person. What is the point of not taking pred for 20 years time when that merely means the next 5 years will feel like 20?

I'd be asking my specialist nurse how SHE would feel about being bedridden when just a few mg pred more gave her a life,

[happytulip in reply to PMRpro]

How did she reply because my nurse isn't listening. She's brilliant but is focusing on "the bigger long-term picture." Well, there isn't going to be one if I keep going around in cycles like this. I found myself googling Dignitas at 4am recently. I'm on the up now because I'm not crying in pain just to breathe but that's only due to upping my steroid dose. I mean seriously...dignitas just because of a pred reduction and 72 hours later I can move!

I know I joke about stuff but I really was at one of my lowest points and it's not just me that goes through it. It's my family too.

[Wendy39 in reply to happytulip]

It's so hard to get people to understand what our lives are like isn't it. Until I found a new Rheumy recently, I was told I wasn't allowed steroids for flares and had no advice for how to deal with them. I was just expected to cope on my own!?!?! I lost my temper with my Rheumy nurse in the heat of the moment and told them they were inhumane. Whoops. But that's how it felt, from my side, in the depths of a flare and desperate for help.

[PMRpro in reply to happytulip]

No - I meant I would do it in the same position. It isn't a problem I have - the doctors here accept you need what you need. Though to be fair, I am below 10mg.

Tell her all that you have just written - because if I had to spend my day in bed and in pain because someone wouldn't let me have another couple of mgs pred I would also be googling Dignitas.

I've often written posts about the side effects of pred versus the side effects of the illness. Immobility is a major risk factor for osteoporosis. Constant pain and being cut off from normal life in any sense are risk factors for depression which, in turn, is a risk factor for suicide. I could go on - but if your nurse won't listen to you then tell your GP or any doctor who WILL listen. Because mental health and suicidal thoughts are currently the in-subject so you are likely to be heard by someone.

[Wendy39 in reply to happytulip]

I'm definitely for living here and now. None of us knows what the future holds. I'd happily take steroids every day to live a better life with my kids whilst they are young and living at home with me. Like you said, better to be up and active than really ill and bedridden too - as just being bedridden alone has health implications. It's going to be an ongoing discussion for us lupies isn't it.

[happytulip in reply to Wendy39]

May I ask what dose you are on?

[Wendy39 in reply to happytulip]

I'm not on daily steroids. I take 2 x 200mg hydroxy and 3g MMF plus 2 antihistamine and iron. Waiting for mepacrine to be added into the mix. But when I'm on steroids I feel alive, human and like the old me (who I miss, a lot). x

[lorilou8]

I now have osteoporosis and had several fractures as a result of being on long term steroids so be careful!

[Cann]

For me - hair loss, bone problems, breathing problems - I could go on, but everyone is different and I was on them for six years.

[Chanpreet_Walia LUPUS UK]

Hi Nadine_K,

Welcome to the LUPUS UK HelathUnlocked Community!

We published a factsheet on ‘LUPUS: and Medication’ which you can read here: lupusuk.org.uk/wp-content/u... . It lists a number of different side-effects that are possible with steroids. You can also read more about side-effects of steroids at nhs.uk/Conditions/Corticost...

We also offer a free information pack that contains factsheets, guides and list of helplines and LUPUS UK contacts that you can download or request here: lupusuk.org.uk/request-info...