As my triple therapy seemed to be working and I've been largely pain free, I've been slowly tapering off of prednisolone (reducing 0.5mg per week). However, the drop from 5.5mg to 5mg seems to have resulted in my feet getting a bit tender again. It's not absolutely intolerable (can cook dinner etc.), but I certainly wouldn't fancy going for a walk. I only reduced my dose about 4 days ago - do I...
1. Persevere with 5mg for a bit and see if my body acclimatises, or...
2. Go back up to 6mg, and try again once stable, but a bit slower this time
?
Thank you, hive mind
P.S., I should mention my rheumatologist seems happy to leave me to make my own decisions re: this sort of thing.
Written by
Smelliott
To view profiles and participate in discussions please or .
I'm had to go back up from 4 to 6 and come back down again slowly. I got back to 5mg ok, stuck there for a month as instructed by the Rheumy and yesterday dropped to 4mg. I'm going to try to stay on 4 for a whole month. Then, if I feel I could go lower I shall do the alternating dose method: 4,3,4,3,4,3,3,3... and see how that goes. Good luck with whatever method you try.
Ah, I alternated 6, 5, 6, 5, 6, 5, then 5, 5, 5... clearly either too fast, or maybe the triple therapy isn't quite doing the trick well enough, so I'll try to go more slowly next time. Might try filing off a little of a 1mg tab to make a 0.9mg tab...
Hello Smelliott,It seems the last part of tapering is often the hardest. We think we've reached the home straight and can gallop to the finishing line, when actually we need to slow down and approach it very cautiously. I found that alternating was the right thing for getting from 5 mg to 0. I stayed on 5,4 for 2 weeks, then 4 daily for 2 weeks, then 4,3 for 2 weeks, then 3 daily and so on. It took a good 4 months, but it worked a treat. Slowly does it! Hope this helps.
P.S. If things get worse at any point, I was told it was OK to go up to the previous dose for another couple of weeks.
Hello again Smelliott, I am slowly getting where you are right now.It's been a week since I started Hydroxychloroquine. I am seeing some difference but not sure if it's time to start tapering steroids yet. I started with 10mg and now down to 5mg daily. Like Loabridge said above, I will probably take that alternating dose route too. My Rheumy also gave me permission to adjust dose a little bit as needed when tapering, just gave me usual advice about not stopping abruptly or go to higher dose without consulting her.
Here is wishing us luck in getting off the steroids soon!!
Hi👋I've never tried the alternating method. I just go down 0.5mg when I feel like I can. Sometimes I feel a little worse when I do, but if it's tolerable, I just wait it out. I know that if I try to go up again only by 1mg, it's not going to work for me. I've had this happen in the past, and it was also my feet!!
So I'd be careful, maybe try and see if you are adjusting to the 5mgs. I've heard that the hardest part of tapering is actually once you get down to 5mg. But anyways, good luck to you! So happy triple therapy is working for you!!
Alternate days Smelliot so 5mg one day, 4mg the next then 5 then 4 so over the two days you’re having 9mg. Cutting doesn’t work as they either don’t break evenly or they shatter 😊
Hi, yes go your own way. I was on prednisolone for almost 10 years! I started at 30 mg couldn't take higher because of my heart. Made me extremely hungry and retain water. When I started to drop down I did it over the years. When I got to 1mg I stayed on it for almost a year. It took me skipping first one day an on and until I stopped. I don't retain water any more and lost most of the weight I gained 80lbs was always hungry. If i was watching a British TV show and they had toast jam and tea I would have to make it and eat it. I would do that with everything. I do agree do it your way. If it works for you.
Has any of you experienced a flare up after stopping steroids. I am very new to RA and had a crp of 63 which freaked everyone out. I had the steroid injection and felt great I was getting diminishing returns from steroids and then the crp would jump up again when the steroids stopped working. I decided not to continue with the steroids and everything seems to have settled down. Is that something any of u have experienced? Also I have weird marks and dints where I had the injections.
Are you taking any medications other than steroids? They're generally only considered as a temporary fix so if you've been diagnosed with RA and aren't taking anything else to actually treat the disease (and/or you are taking other medications but they haven't had time to kick in yet), sadly it doesn't seem too surprising that your CRP levels, pain etc. will start creeping up again eventually...
CRP of 63 is really not that high? Do you know why they were so freaked out?
Have they replaced the steroids with other long terms drugs? As they are really not good news in long term. When I was first diagnosed I was only allowed a maximum of 3 a year. And a side effect of steroid injections can be dimples, sometimes they go and sometimes they don’t. My French doctor won’t give steroid injections into one’s bum for that reason!
And it’s not really a flare up after stopping steroids just going back to uncontrolled inflammation - all steroids do is a temporary fix. Sometimes it can take a long time for the disease activity to get going again, but if you have been correctly diagnosed then it most likely will.
I had a "dent" where I had my first injection but it went after several months; I asked my GP about it and she said that it was quite common and might be permanent. I didn't get one from the second one so it doesn't always happen.
I think they were freaked out because they had tried for 6 mths to tell me it was fribromyalgia. I had bloods and finally got diagnosed with sero positive rheumatoid. I have started sulfasalazine and hydroxchloroquine.
If anyone's interested, I attempted to stick it out on 5mg to see if it improved, but around the 8th day it started to feel even worse, so I bumped myself back up to 7mg (that was yesterday). I shall wait until I stabilise and then try again, but slower this time!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Tapering prednisolone but need boost 
Writing your own GP letter for PiP
Choosing Your Meds
