Problems on reducing Prednisilone

[Whippetygirl]

After two months on Prednisilone 20mgs my doctor reduced to 15mgs and I felt I had been hit by a train, put back up to 20mgs with no relief now on 25mgs and struggling. Has anyone else been in this situation, any help gratefully received.

[HeronNS]

How were you before the 5 mg drop? Did you feel all your symptoms were very well under control even if still the slight niggle? If you felt well with the 20 and horrible after a 25% taper, then I think it was the very large drop which did you in. Really the most you should have been expected to try would be 2.5 from that level, less even better. Usually we say no more than 10% at a time. And you need to either taper very slowly using one of the slow taper methods developed by patients like us, or stay at the reduced dose for long enough that any pred withdrawal symptoms have settled and you feel well again, usually at least a month. Slow tapering helps to avoid most if not all withdrawal symptoms. Some of us are very sensitive to even small tapers so have to go super slowly. No wonder you felt so unwell after the 25% reduction.

Try to get enough rest (although get some exercise too) and avoid stress for the next little while. Give the extra pred time to work. Don't taper again until the symptoms are as good as they will get, and then taper in much smaller steps. It seems fairly common for people to flare like this if the dosage step down is too large, and if it is overnight rather than being phased in over time.

Do let us know how you get on. Hope you feel better soon.

[Whippetygirl in reply to HeronNS]

I was doing well on 20mgs that is why my doctor reduced the dosage, obviously does not know about only reducing 10 0/0.

[HeronNS in reply to Whippetygirl]

Unfortunately we all end up being far more experienced than our medical people it seems! As long as they are willing to listen and learn. Do you know about the slow tapers we use? There are a couple on this forum and there are others. I myself have used Dead Slow, Nearly Stop:

healthunlocked.com/pmrgcauk...

And there is this:

healthunlocked.com/pmrgcauk...

I took copies to show my doctor when I was about to slow down my initial taper (1 mg per week from 15 mg, wanted to slow down when I got to 10). I asked her opinion and she told me to go ahead and try tapering that way, and it's worked well for me.

[Waterfeature]

Hi, I think two months is a very short time, I was on prednisone for six months before cutting my dose, and then very gradually. I am now on 5mg but still get flare ups but if I can function with the aches and pains then I will persevere, but if I’m in too much pain I will up the dose to 10mg. Good luck

[SnazzyD]

There’s no way I could have dropped 5mg at that level, I can’t imagine what the withdrawal would have been like if I had, 2.5mg was quite enough and I didn’t have the PMR bit. Doing that after 2 months sounds quite fast too compared to others.

[PMRpro Ambassador]

Typical yoyo pattern and result. Just because they can reduce like that when they use pred for other things does NOT mean it works in PMR/GCA - and it almost never does.

[Nanna71]

I have been on pred. for about 6 months. Starting dose 50 mgs. for 5 days, then reducing by 10 mgs until 20 mgs. I felt quite good at 20 mgs. (along with methotrexate and sulfasalazine) - this was all for rheumatoid arthritis diagnosis in November 2018. I have had a terrible time reducing from that. I tried 3 times to get down, by 5 mgs each time on the advice of my doctor and had so much resulting pain that I had to go back up.

Now doctor thinks I have overlapping PMR. So, have just gone back to 20 mgs about 4 days ago and, now that I have read so much about the slow tapering schedules, I will wait until I feel well again to try another reduction of only 10% at a time.

There is plenty of excellent advice on tapering here. All this up and down though, for me is causing the going up longer to kick in. So day 4 I'm still having pain with the 20mgs. I think waiting until it kicks in is good practice according to the folks who know here.

I also worry about the bone health issues but I have to be able to have some sort of life with these diseases. The pain is too great to leave unaddressed and I'd rather not live at all with it.

I hope my short experience is of some value to you.🙂

[Whippetygirl in reply to Nanna71]

I have just re-read your post as I have just had a flare , diagnosed March 2019 had symptoms since October 2018 put on 20mgs Prednisolone which my doctor reduced to 15mgs after two months had a big flare , went back up to 20mgs but didn’t touch it so went up to 25mgs which worked. I have been reducing 1mg every two weeks which seemed to be fine until I got to 12mgs starting 1st Jan. Started with what I thought was withdrawal symptoms which I ignored thinking my body would get used to the new dose but by the end of the month this turned into a flare. I added 5mgs in the hope that it would settle, 4 days in and only slight relief, don’t really want to go back up to 20mgs as I would be back to square one. Please could you let me know how you have managed your taper and have you been pain free. I have been one of the lucky ones as my PMR has only affected my arms and shoulders but it has been excruciating.

[Nanna71 in reply to Whippetygirl]

My initial diagnosis was RA, later PMR added on. So I am on a number of drugs besides pred. Before diagnosis of anything, I was started on pred. 50 mgs. Later when I got to 20 mgs. I had a very difficult time reducing, as was told, from 20 to 15. After yo-yo ing finally decided to go 1mg per 2 weeks taper until about 10. Had a glitch at 14 so went up to 15 for a few days then a day at 14, then another 15, then 14 and stayed well for 2 weeks, then to 13 and so on. At 10 I reduced only a half every 2 weeks and had trouble at 9 and a half - did an up and down, did well, then onward. Now at 7 and a half and having a bit of pain after 5 days so may stay on it for extra time.

So, I decide to go back up if after 3 days I am not comfortable with the taper. Some of this discomfort I put down to pred. side effects so I take 3 days to see if the pain subsides. If I am having pain increasing I go up to level where I am comfortable, which takes more than 24 hours for me personally.

The wisdom here for PMR, is to take what is necessary to be comfortable because pred is your only drug and why take it at all if it's not helping. The goal is to get rid of the pain not to get to zero as fast as possible. Many experts here on this. Eventually, as PMR is self-limiting, the disease disappears on its own so tapering to what you can handle is the way to go. For me, the RA is a life sentence, while the PMR is not.

Additionally (what a ramble, yes?) I have done a number of activities that cause pain days later that are not a flare but I have overdone it. Sorry; I am a long-winded person.