Prednisolone burst over

General
1

Well it seems its over !

I have been taking Prednisolone for 5 weeks, started on 15mg for 2 weeks down to 10mg for 2 weeks then 7.5mg until my next rheumy appt, I also started to take MTX last 2 weeks at 7.5 and upping to 10 tomorrow.
Since I have dropped my Prednisolone to 7.5 the pains are returning my hands wrists, elbows, knees and so it goes on. I am not to worried over the smaller joints as I hope when MTX kicks in the pain will improve. Its my SI joint (I have a lot of inflammation on its way to fusing) that causes me concern. The pain is building daily, night time and sitting are getting a problem again. My rheumy has told me that MTX wont work on SI joint.
I know I cant stay on steroids for ever but really would like to go back to 10mg daily however worry about the effects on my general health. I am waiting for appt to have steroid and pain relief injection into pelvis but NHS wheels turn slow.

Has anyone been on steroids long term and have they caused any long term issues?

Any advice would be appreciated,

Blue.

2

Hi Blue,

I’ve been on them for a little over 7 months. The theory was burst and taper like you, then let MTX take over. MTX, whilst it had some effect, wasn’t good enough to keep me functional and whilst the plan was to keep at 7.5 mg or below, I kept having to up them (so my average dose was around 10-12) to remain functional enough to continue working at my job.

At 7.5mg or below, which on occasion I sustained for 2-3 weeks, there were no significant noticeable side effects (at the time - doesn’t mean adrenal suppression is not happening).

At 12mg for any length of time (5 days or more), I started to move fat to my belly and cheeks (didn’t gain weight overall - just moved the fat around - though many do gain substantial weight).

At 15g for 3 days or more, I started to notice mood swings and start to not trust my judgement as much as I normally would (and now the moon face starts to get obvious).

From a clinical point of view, we checked bone density at 4 months, and I had osteopenia of the spine, with good density elsewhere, and because of my relative youth and that pattern, the Rhuemy felt it was most likely caused by steroids.

Now I’m weaning off the steroids. The withdrawal is not fun. I obviously have some adrenal suppression. I had a bad cold and couldn’t figure out why I couldn’t physically get out of bed and just kept sleeping - which I have never done before - turns out I needed some extra steroid because I had suppression.

Having said that, I suspect my adrenal suppression is not bad, yet. Many RA forums have people on them who just can’t get off steroids at all. Whilst my weaning is still happening, the relatively quick rate of 1mg every 4 days certainly lends hope that I can be steroid free.

I think that the levels at which you see side effects (including adrenal suppression) will be very individual, and I’d be very surprised of they were the same as mine, that was just an example of one persons experience.

The point though, was that unfortunately almost all of us who take steroids for more than a couple of weeks do see side effects. It’s not like paracetamol, where the side effects are rare - if you take steroids long term, you will get some or all of the described side effects.

Having said that, I didn’t have biologics available to me until last week, and without the steroids, I would have lost a job that I am good at and enjoy, and now with Enbrel can look forward to continuing with for some time.

It’s not a simple equation - there’s lots to weigh up, so good luck :slight_smile:

3

Many Thanks JenAus,

Lots of food for thought.

4

I have been on steroids for 4 months. Unfortunately a new doctor I saw gave me a bottle and said "take them as needed". When I came back she was out of town and the new doctor was shocked to see a doctor perscribe them that way instead of weaning me off slowly, so now I am taking them steady at 10 mg a day. It is hardly enough to get by, but the steroids are a miracle for me. It's like night and day. I don't notice too many side effects. The doctor was suprised I didn't gain weight. I have bounced around too many doctors trying to find the right one and they all have warned me that steroids are only okay short term, so I guess there is worry with them. We will both have to find a new drug to manage the pain. I hope there is something this effective!

5

I am on 5mg prednisone with enbrel. this has been prescribed because the enbrel is unable to control the severe flares. so far the combination works well and the low level of prednisone will not cause long term issues that doses above 10mg will do.