Third day of steroids and after a slight improvement I feel much worse this morning

[cathie]

Could this be a steroid flare? I've been put in 10mg prednisolene twice daily until rhumey can see MRI result from Saturday. My hands and general state of inflammation was better yesterday but this morning I felt very down, swampy and hands are ...

[earthwitch]

Makes me wonder if there is a dodgy batch of prednisolone out there (just joking).. I usually respond within 24 hours, but last couple of times its taken a full three days to start getting relief, and this time I'm still not feeling that great, though definittely an improvement over what I was. Yes, I do now get steroid flares. I don't think I did the first couple of times, but I can get a quite flu-like feeling and ache all over for a day or two.. Mood changes are also incredibly common. A lot of folk quite quite high, buzzy, almost to the point of being quite agressive, but it is possible to also get quite down with it. I usually get quite buzzy, and just haven't this time, yet. (day four I think). I was pretty bad by the time I got the pred so I just figure that my 20 mg daily dose (down to 15 mg after three days) isn't really quite enough to get rid of everything this time. The time I got the really best result was when my rheumatologist wanted to really give me some good relief and to confirm once and for all whether it was inflammatory (spondyloarthritis) and put me on 20 mg a day for two months. It was absolutely brilliant. I can't take that much steroid again though, so just see my ten to fourteen day course asa bit of a holiday from the worst of the pain, that allows me to keep on going.

Is there a reason for taking the pred twice a day? I've always been told to take the whole daily dose in the morning. That way I have half a chance of getting some sleep later on. If I took it twice a day I doubt I'd get any sleep. I

[oldtimer]

When I'm on higher doses of steroids I find I swing madly between feeling high and buzzy and wanting to do everything at top speed to feeling down and depressed that this awful disease is taking over my life. I usually feel down in the mornings before the next dose of steroid kicks in and often when I wake in the night at 3 am - that time when everything seems so dark and frightening. I keep telling myself (when I'm down) that this has happened before and I will feel better soon.

[cathie]

Thankyou friends. I've checked and the two wee pills are 5mg so I'm on 10mg a day. After talking to my lovely pharmacist I've added a little ibuprofen and that seems to be helping with the miasma and inflammation. Si I've woken feeling reasonably clear. Also I saw a (sadly private) physio who has filled me with hope that I can get back on my feet and strengthen leg muscles.

Earth witch, you asked why I was taking pred separately, that's what they asked me to do, with food. So far my sleep is ok, but your reason for morning dose sounds sensible. Do you not feel worse before you take them though.

I'm just hoping to be given something sustainable now, back on biologics?

[earthwitch]

10 mg a day wouldn't be enough for me to get any real response. I know docs like to keep the dose as low as possible for as short as possible, but my GP finally agreed that if it was going to do anything I did need to have it a wee bit higher. I don't know about RA, but a lot of people I know with AS find that the effective dose for them is 15 or 20 mg a day. You'd only want to do a maximum of two weeks on that dose though for the best chance of avoiding potential steroid problems. It kind of depends why you are taking it though. For me its a real break from pain for a couple of weeks that allows me to cope for another three or more months, when I don't have any other treatment available. If it was just to take the edge off a bit while I waited for something else to kick in, I might be tempted to take less benefit and a lower dose, as long as that lower dose was actually doing something.

[cathie in reply to earthwitch]

Thanks. I'm still waiting for result of MRI which may allow me to go back to biologics. I don't know what will happen, but the steroids are making enough of a difference to enable me to function. As you say, a break from pain is so welcome.

[Bazzypants]

Hi Cathie, hope you will soon be feeling better soon, hope you get positive results to xxxx

[cathie]

Thankyou