As some of you will have read I've been taking Pred for 9 days and about to start climbing down from 20mgs to 15,10,5 0 etc. What should I expect I wonder? When I started it I was still having a ]prolonged flare. The mood swings have gone away thank heavens and I'm feeling more settled and appreciative of the freedom from pain it's been bringing me.
My hands are bad again today but not as bad so I wonder if I should expect it to linger in my system for a few weeks, days or what...? I asked my GP and he said "maybe" so thought I'd ask you people who have more direct experience of short bursts of oral steroids and what happens when you stop taking them? I realise that everyone is different but I have a lot this coming week on so thought I'd better get prepared mentally for return to immobility etc? Also worrying that the steroid will linger in my system for a few weeks masking the symptoms when i get to see the rheumy on the 24th? Your experiences, if at all similar, would be invaluable to read - thanks! TT
Like you, I am on step down steroids. I had my first step down from15 to 10mg last thursday.
I've found that the symptoms I had before have started to come back each morning. I.e I experience more stiffness in the morning than I did on 15. I need to take regularly pain relief again in the morning to help me get going. I am also slower. I experience low level dull ache once again in my hands, some slight stiffness to the fingers near the knuckles. Once again just until about 11-12 (late morning) and then I am fine for the rest of the day, have not needed any additional pain relief, so far outside these times.
I am expecting more of the above and maybe a return to waking up in pain during the nites when I step down to 5, in nearly two wks time. My hope is that the MTX will have started and will offset some of the background pain I expereinced before!
This suggest that the steroid has not lingered and to continue its affects its need to be taken all the time.
I hope that helps
Sci x
Right that's really helpful Sci. The timing isn't great for me because I've still got 2 and half weeks before is see the rheumy so that's quite a while to be in pain for but I'd rather plan around that than expect effects to remain and then get a nasty shock if I re-enter flare mode.
My GP did say I could take less (10mgs) for most of the week and that way step down more gradually making the remaining ones last out a bit longer. Hopefully if I do get put on MTX end of this month I won't have to wait until rheumy letter arrives at Xmas a month on (last time took a month) because Christmas probably wouldn't be an ideal time to start this drug? Then in the new year I begin a post grad course so really want him to get me started on treatment asap from consultation. He did say MTX would be the first line treatment he would put me on and took a chest xray for the purpose so I am half expecting it. Sorry waffling here but thanks again and good luck - will be imagining you stiffening up a bit more everyday as I do too but at least you've got the MTX effects to hopefully look forward to experiencing soon.
Forget to mention I noticed yesterday that the heat has also come back. Not as bad as before - it was really warm and accompanied by huge swelling. So your guess is as good as mine - is this the start of the return to swelling (swelling for me meant pain, so i hope not).
Some one else mentioned, Marnie I think, that 15mg did not take all the pain away. I would agree, whilst the pain was much reduced, I was aware of it and if I moved suddenly, I would get a shooting reminder that the pain was still there, but it was a sort of underline pain, being masked reasonably well. I am not knocking 15mg it made a huge difference to how I felt and what I could do.
I am due to complete step down course chrimbo wk and I also see my rheumy that wk also. I would of been of steroids for about a wk. If pain comes back to similar how it was before I am going to ask use steroids on a more long term basis.
I have only been on MTX for 3 wks now, so it may not start to work as yet by chrimbo, although I am hoping it does provide some relief by then.
Just thought i would let you know my experience and maybe it can help you as I don't like saying things when drugs are concerned Incase somebody becomes Ill from what I say
I was on 20mg and was told to reduce by 5mg a week.
At 20mg i was still in pain so reducing it was something i didny want to do.
First week in at 15mg I was in pain my hands went back to captain hooks.
I called the const who said to go back up to alternate so 20mg one day and 15mg the next. This was slightly less painful but my hands were still hooky
Then again I trie to go down to 15mg and I couldn't bare the pain.
And after my little stay in hospital due to a horrendous flare im now I'm on 40mg
The reason I tol you my little yoyo story is I wanna show you your body knows best and if the pain is too much! Tell the const. Just coz they say reduce them isn't always what's best for you and. Your RA!
Good luck with it all
Marnie xx
Thanks Marnie. I always feel so bad when I'm moaning on or asking these things because I know you and many others have it so much worse.
The only thing I would say is that I have no access to my rheumy - everything is conducted through my GP who doesn't get replies from rheumy for an age usually. My GP said that because I get these extreme mood swings on steroids better if I can stay off them and he's really hoping that the consultant will make a decision that it is RA and treat aggressively with DMARDs this time round. He says he's not happy to prescribe me long term steroids unless I've discussed it with my rheumy and I'm on the more appropriate medicines he thinks I need at this stage.
I am really not wanting to be in more pain again as it makes me useless but at the same time I don't want what happened last time to happen again - so I was trying to plan ahead so that the pain and swelling would be apparent to him in form of flare by the time I reach the 24th of this month. I know this sounds ridiculous but he said he needed to see me in flare to make a diagnosis so I am only trying to give him what he claims he needs because I'm desperate for diagnosis and treatment now! I've only been given enough Pred for another week max - and that includes stepping down so I'm trying to make the most of it. I've got a gynae apt to remove a polyp tomorrow so I really wanted to be okay enough to get on couch and get it over with if you know what I mean?! Should be fine as hands hopefully won't be relevant and my hubby is driving me to the hospital.
Take care Marnie - I think of you a lot!
Tilda x
Ps well actually hands might be relevant if it hurts as I can't clench fists anymore!!
Awww don't be silly, everybody has RA differently and I am just in a horrible flare! Thank you for thinking of me.
I have a little note pad and score myself day to day and draw little stick people and circle where the pain is worst. Helps me show the rheumy. I hope you get your diagnosis and your DMArds. Also I hope they work for you.
Don't forget to blog wether your having a good day or bad day, being away from here the last month has made me realise how much being on here supports me.
Xx
Yeah me too! TildaT x
Well I'm now down to 15 mgs per day and only hands are playing up more but then the pain never really left them and also I've been working (stitching) with them a lot so that probably doesn't help much.
Great floods of heat have been surging all about my body for a few days though - not unpleasant just weird. Think I'll stick at 15mgs for a few more days and then get down to 10 and finally take the plunge when the pills run out. I'm scared to say it (touching wood madly) but so far that total body pain is starting to feel like a distant memory and knees and feet feel fab.. maybe the Pred will be my saving after all? TT
Hi TildaT, just don't go down too fast. When I flare-my Dr puts me on 15 for 3 days, then 10 for 3 days, then back to my normal 5. I have never been able to go down from 5, even at 4, I will flare up & not be able to walk, etc.
Okay thanks Tinwoman that's good to know.
Am still conflicted because being in such extreme pain is relatively new to me and now the Pred has kicked in properly its great and I keep thinking the past few months of non stop flare must have been a very bad dream that I've woken up from - apart from hands which seem to sieze back up overnight and then gradually soften up again over the day after my next dose.
Feel like I could dance, skip and run a marathon just now as long as no one asks me to carry anything in my hands too! I thought I'd take 15 for two more days then ten for a few and then down to 5 for the remaining week. That takes me up to a few days before I see rheumy for the 2nd time. I know the Pred is working brilliantly because I am no longer dreading getting out of bed or up from a or waking in the night with some joint completely locked - amazing how normal I feel again - and i can drive too! I realise I'm lucky because for some it gives very little relief beyond keeping hell at bay. But I have put on 3lbs in a very short time and appetite is soaring ;-(
Has it given you side effects like bruising and moonface I wonder and if yes are these things worth putting up with for the good it does? I had terrible mood swings last week on them - was same on the Kenalog - but they seem to have abated a bit and now I am just really enjoying my week! My GP friend told me that the idea is that it hangs around in system giving some relief for a while after course has been finished but we will see. Not noticing a difference in step down from 20 to 15 yet. Take care. TT
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