Prednisolne

[DD22]

Hi I have lupus with fibrosis of the lungs.

I've been on prednisolne for 3yrs now ,started on 30mg down to 9mg. However having had a lot of chest infection of late, I was put back up to 25mg for 2wks with antibiotics then told go back down to 9mg. Is this safe to do this without any ill effects.

Many thank

[misty14]

Hi Dd

Sorry to read of your persistent chest infections!. Have you been told to reduce the steroids slowly?. It's usually kinder to do it by a mg anything from a week to a fortnight to a month depending on symptoms. You've got a big reduction to do like I have . I've got to get to below 10 mg from 25mg and I'm on 20 mg at the moment. Can reduce by a mg every week or fortnight , can notice a difference, can you?. Good luckX

[DD22 in reply to misty14]

Hi misty14

Yes I have been reducing steroids at 1mg monthly for a while now, that's why I didn't really understand the drop from 25mg back to 9mg. Maybe because I was only on 25mg for 2 weeks. Have been feeling a bit wobble last few days & I'm sure it's down to the steroid reduction.

Really dislike taking steroids & all the side effects that comes with it, as I'm sure that's the same for you.

[misty14 in reply to DD22]

Hi DD

What dose are you on at the moment?. I hate being on steroids as I worry about the side effects and do find reducing hard!. It can effect us even 1 mg at a time and my doctors are never satisfied with what I achieve, it's never low enough or done fast enough!. Good luck with what your doing. X

[tashi]

Similar thing happened with me. Been on steroids for 18months for blood problems and got dose down to 7mg then had completely new & different cutaneous flareup. Dose went upto 30mg for while with steroid cream to use too. then reduced by 5mg every 5days until back to where I was. Rheumy is trying to get me off steroids but can only go down 1mg per month as he won't risk blood pressure flaring up again. can't tell if blood working properly until off steroids for long enough to see if methotrexate is doing what it should without them, and then gradually reduce that to see if my blood is working properly again! Really want to get off steroids as I get problems with balance, weakness, weight gain etc.

Hope your infections clear up & stay away this time x

[DD22]

Hi tashi

I'm the same about wanting to get off steroids & all the side effects that come with them. I'm also on mycophenolate with is also an immune suppression , which are meant to be helping to get me off the steroids.

Good luck with your reduction.

[Maureenpearl]

Hi DD22

I have the same diagnosis as you with lots of add ons. I have been on Prednisolone 20mg for a few years and I did try to reduce gradually, but felt awful and had to go back to 20 mg. However after having Cyclophosphamide in 2011 and having extra steroid in the form of an infusion before each Cyclo I was unrecognisable, so my Rheumatologist decided I should reduce the amount of steroid again to 10mg also because the MRI scan showed I now have vasculitis.

I reduced it straight away from 20 to 10 mg without any problems.

In December and again this month I have had several chest infections to which I had to increased the steroids to 30 mg for five days, after which I went straight back to 10 mg with no ill effects.

Hope this is helpful and you will soon feel x

[DD22]

Hi Maureenpearl

Thanks for your reply, very helpful it's nice to know its ok to reduce such a big drop. The way I've been the last few days I'm sure it my body saying it's not liking the reduction. Lots of pain etc , but I'm sure it will pass.