Do you take long time steroids?

Hi everyone, my daughter has been told that for het own good,it would be best if she stayed on prednisilone long term.

Which is what she is doing at the moment,I think she takes 3 a day at the moment,she was on 20 a day when she had pnumonia.

The only problem is,she has brittle bones already,she fractured her ankle when she slipped off of a mat at the gym,and fractured her wrist really easily.

We were told when she was younger that this could happen as a result of het having to take steroids for severe asthma.

She does take lots of other meds but it is the long term steroids that concern her.

She has is due to have a brain,spine and heart scan,to check that the swelling hasn't come back.

Steroids have been a godsend to her,without them ,I don't know how she would manage.

My mum has RA and alps,also other inflammatory diseases and steroids caused her osteoparosis and heart disease.

Can't win ,if she doesn't take them she could have lots of damage,but if she. takes them,she could have loads of damage.Thanks Sandy

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  • hi - I have been taking steroids at various levels for the past 14 years (since I was diagnosed). I now take a steady 5 mg of prednisalone daily but this is sometimes increased if the lupus is flaring or I have caught a bug etc.

    I was diagnosed with osteo-genises inperfecta ( an heriditary more serious form of osteoperosis) when I was 34 (am 54 now) but the only way I could get some sort of quality of life was to go onto the steroids. It is still not great but it is better than I had before.

    The desicion to go on them was not taken lightly and was fully discussed with the rheumatologist who was quite open about all the risks involved and who also talked to my husband as well.

    I think it is a personal choice after waying up all the benefits and side effects.

    Hope this has helped - Irene x

  • I'm taking steroids long term, 5mg to keep my rash under control. I was told anything under 7.5 was a safe dose. After a dexa scan i was told i have osteopenia(thin bones). They've prescribed another drug to prevent osteoporosis. Having read about the side affects of these drugs, i've refused to take them for the moment. Trouble is there is downside to whatever drugs we take.

  • With proof of thinning bones : Rx Vitamin D and calcium supplements are highly recommended.

    To maximize bone density : calcium and vitamin D through your diet, a bit of sunshine (difficult with SLE patients who are sun sensitive), weight-bearing exercise on a regular basis, do not smoke, avoid fizzy drinks, and avoid alcohol.

    The trouble with Osteopenia is you do not get to choose which bones break. It is not always the big bones - femurs for example - which break. Falls are not the only cause of fractures - a well intentioned hug even a handshake can cause fractures. The most common fractures occur in the spine, hip, or wrist.

    Protect yourself to prevent fractures as much as is possible.

    Please take care.

  • Thanks Nouska, i was thinking of joining a local tai chi class as i can't really walk as much as i used to.

  • Fantastic Melinda. JUST DO IT!

    Tai Chi and Qigong are healing to the body and to the soul.

    There are good Tai Chi DVDs available for when you can not go out and about. Tai Chi from a chair (seated position) too! Very good when you have mobility problems.

    Best to stay as mobile as is possible for as long as possible.

    Be well.

  • ive been on steriods for over 10 years without them i couldnt function .ive tried .i take 15mg unless having a big lupus flare when it increases .everyone is different get your daughter to share her concerns with her specialist hope you get the answers x

  • Hi Sandy I've been on steriods for 33 years. They do have side effects but the it's the lesser of two evils's really as the lupus is far more damaging & life threatening, most of the side effects from steriods can be treated. I have oesteoporosis that is being treated. My skin is very thin & I do bruise like hell. But then if I hadn't had them I wouldn't be here today.

    I am on 7.5mg at the moment but sometimes need a top up injection when I'm not well .

    Please don't worry too much Sandy. I so hope that the steriods really help your daughter & they keep her well.

    Take care Hayley

  • I was on them 26 years but insisted I wean off as they caused osteoporosis, which has not responded to treatment. I also had mood swings and chronic yeast infections on my skin.

    I was able to get off them by gradually reducing them and taking more azathioprine.

    I had the test to see if my adrenals were still producing cortisone, and they were, which I could not have done without, because I had been on them so long I knew there was a chance I might not be producing natural cortisone.

    google adrenal produce cortisone test

    I feel better now I am not on them.

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