Struggling to get below 2 mg prednisolone

[Bobbikins]

Last summer I tried the dead slow and nearly stop reduction program. When I got to 1.5 I started to feel tired and have muscle aches in my legs. It’s difficult to differentiate between steroid withdrawal pain and PMR. Rheumatologist told me I’d need to stay on 2 mg, but this winter I’ve been ill for eight weeks with a virus I can’t quite shrug off. Wondering if it’s the prednisolone affecting my immune system? Has anybody else had help reducing below 2 mg.?

[PMRpro Ambassador]

I don't actually find that pred, even at 15mg, affects my immunity.

The only things that might help you get below 2mg are even stronger immunosuppressants so it might take you from the frying pan into the fire! And it may be adrenal function contributing to the aches - and nothing helps there except time and patience.

[HeronNS]

It's probably the dose you need right now because PMR is not in true remission yet. I was at 2-2.5 for a couple of years, despite repeated attempts to get lower. Finally, in the latter half of last year, I attempted to taper again, but this time by doing each step of the DSNS method twice, thus taking three months to reduce by half a mg. It did work to an extent. I was quite comfortable at 1, and even halfway through the taper to .5. Now I'm not so sure. I've decided to wait it out for another week or two, and if no improvement will go back to 1, or possibly to one of those stages in the taper, say .5 for three days (maybe) and then one day 1, and if that's enough just hang out there for a while. I had hoped given the recent success that I was heading to club zero, but it's not as straightforward as I thought it would be. 🙄

In regard to the immune system and pred etc., I'd be tempted to use something to improve the immune system rather than knock it out even more. I know this goes against advice but I think when we get to the stage that we are catching everything going, or unable to recover in a reasonable manner from whatever relatively minor thing we've caught, then it's time to think about other health issues besides PMR. I don't think anything truly speeds up our ability to get off pred, only PMR remission allows that, but in the meantime it's no fun being sick a lot with colds and whatnot. I wrote the other day in response to a thread about boosting the immune system that if I come down with a fourth cold this season I will be hitting the Vitamin C and echinacea! (This from someone who never got colds, or hardly ever, certainly not three in the space of two or three months, even during early higher dose days on pred.)

[Bobbikins in reply to HeronNS]

Thank you for your informed and helpful response.

Just to say, I was told not to use ecinechea with prednisolone

[HeronNS in reply to Bobbikins]

I've been told that too. It's because it works against the immune-suppressing properties of pred. But I feel my immune system is about as depressed as I want it to get. I won't die of PMR but I might die of something else, some nice new contagious virus shall we say, like novel coronavirus?

[Hidden in reply to HeronNS]

Crikey.... Let's hope not. There is that research that said people who had had pmr lived longer than non-pmr peeps. I am never sure if it's good news or bad news! And no. I don't know how they designed the research and what other variables they used.

[HeronNS in reply to Hidden]

All I've ever seen is that PMR has no effect on life expectancy. But suppressing the immune system so you're vulnerable to other illnesses could affect our life expectancy. It's a balancing act. Prior to diagnosis and treatment I think I would happily have popped my clogs. Now not so much!

[Grammy80 in reply to HeronNS]

I had to Google 'popped my clogs' ~!! Love the expression and the origin~!!

[Hidden in reply to HeronNS]

Vitamin C 1000 mg daily helps me.

[HeronNS in reply to Hidden]

In what way?

[Hidden in reply to HeronNS]

Keep cold free

[MamaBeagle]

I'm currently on my way down from 1mg. I'm doing it in quarters and at the moment on 0.75mg. I do feel a bit stiff but the discomfort is definitely not PMR pain. The next drop will be to 0.5mg when I am comfortable that the current dose is working! Good Luck. I was diagnosed October 2017.

[dancersize2 in reply to MamaBeagle]

Well done. I was diagnosed in July 2017 and have got to 2mg with the help of Methotextrate for the last year. Trying for 1.5 taper but have had a few niggles so returned to 2.5 then back to 2. I had hoped to zip on down to zero in the next six months but now thinking that might not be the case yet. I now take panadol oesteo in the morning in case the niggles are arthritis then the pred with breakfast. Usually feel fine by afternoon. May try 1.5 again tomorrow.

[MamaBeagle in reply to dancersize2]

Try 1.75 perhaps it's not sure a big drop. At this stage 0.5 mg is quite a significant amount. Just a thought.

[DianeA1 in reply to MamaBeagle]

I am right behind you, MamaBeagle, as I was dx'd Jan 2018 and am now at 1.25 mgs, and tapering .25 mgs like you.

I break a 5 mg pill into fourths. Some of the pieces are a bit bigger than others so I take them first!! All the best

[Bonnie-ma]

I don't think I can give you a very optimistic response to your situation. I have been on 1.5mgs of Prednisolone for roughly 10 years. When I see my rheumatologist for suggestions he is rather dismissive of my low dose and thinks it will 'not do you any harm' if I stay on this dose forever. I have given up trying to cut minute bits off my pills as my body always notices and life becomes uncomfortable again. I take comfort from the fact that my friend's mother was taking 2mgs of Pred for many years (don' know what for) when she died from a non-inflammatory condition at the age of 96 yrs! Good luck.

[Bobbikins]

Thank you. I feel okay until I get down to 1.5. It may be a cortisol issue so I’m going to get my adrenals tested

[Grammy80]

I have a good friend who was diagnosed with GCA 11 years ago....try as she might she could not get below 1.5 mg of prednisone. She finally just accepted it....feels great and is one of the most active and energetic 85 year olds I know~! After trying to kick it....she just incorporated it into her daily regimen....that would work for me. 😉😉

[jimcarlow75]

Hi, if ypu have a flare when on 2mg pred, what dose do you neef to go to to relieve your symptoms ?