What is a safe maintenance dose of prednisone?

[Golfbarmie]

What is considered a safe level of prednisone to take as a maintenance dose? At 2.5mg/day I am functional but a bit grumpy. Lower back and old 'war wound' on the R knee hurt. Play 3 nine golf holes a week. Walking.76 year old, would be golfer with so called PMR. I was happy at 5mg. Really want to get rid of it altogether but am constantly weighing up life style against the down side of the drug.

[123-go]

Hello. It would be impossible to suggest what might be a safe maintenance dose of Pred as that would depend hugely on the individual.Will you tell us a bit more about your history, i.e. when you were diagnosed, starting dose, tapering, any 'bumps' along the way, etc. As you were ok on 5mg it may be that you tapered too quickly to reach 2.5mg.

I'm curious to know what you mean by "so called PMR".

[Golfbarmie in reply to 123-go]

Hi 123, I was diagnosed Jan 2015 with GCA.

Tapering 60,40,20,10mg over a couple of months.

Suddenly a flare of PMR, unmistakable, as I needed walking sticks to visit the rheumatologist. Then decreased pred slowly using best advice and keeping an eye on CRP numbers. These numbers have for the last 2 years averaged a few notches above the <4.5 norm.(using Canada standards)

Covid vaccines caused extra discomfort so I bumped up pred to 8mg and CRP went down as expected. Now at 2.5mg I am getting nagging lower back pains and R knee aches. (I was having a pain free run at 5 or 6 mg/day)

Which brings me to your last question.

I am questioning whether I am suffering from wear and tear injuries which most 76 year olds are subject to. Years of sports wearing down the old joints.

Since watching an interview with Dr. Gupta the English PMR expert

I have doubted my condition, thus my expression 'so called PMR'

Suppose you were aching like all of our parents and their cronies were. Did they have PMR or were they just getting old?

Hope this throws some light upon our situation.

[123-go in reply to Golfbarmie]

Hi. and thank you for the added information. You are quite right to mention aches and pains due to to wear and tear and aging. For many of us these will have been masked by the steroids but as we reach lower doses they may well rear their ugly heads. Your aching knees may be due to arthritis but I don't presume to know enough to comment on that. In my personal opinion, PMR pain is different from any other I've experienced and manifests itself largely to include muscle weakness and stiffness. Nothing will help manage the disease other than Pred so if you were ok at 5-6mg I would suggest your PMR is still bubbling away.

In your position, I would go back to that dose and stay there for a week or so and then reduce using one of the slow suggested tapering plans recommended.

I'm not familiar with the comment made by Professor Dasgupta to which you refer but others here may be. I know that he's quite happy for patients to remain on low doses of Pred and I would accept that if it meant a better quality of life for me.

I remember my parents having aches and pains and difficulty in moving around and I see that in others around me now who are at my age but never with the completely disabling symptoms of PMR that we had before diagnosis and steroids. I believe that 'normal' pain due to ageing is completely different from PMR.

I hope you get your life back to manageable levels and are able to continue to do the things that you enjoy.

[Golfbarmie in reply to 123-go]

Hello, This is the interview with Professor Dasgupta I mentioned in my post. youtu.be/vdwjdQOfjMc(Not working as expected?)

[123-go in reply to Golfbarmie]

I have at last got round to viewing the podcast and do remember watching it before. I have to admit that I still don't know what you mean by so called PMR so will leave it there. My best wishes to you and I hope you will find a solution to your knee problem and other complaints that will enable you to return to your golfing. 🏌️

[PMRpro Ambassador in reply to Golfbarmie]

Prof Dasgupta is more an expert in GCA. His use of 2-3mg pred longterm is because he finds it reduces the risk of relapses/flares which I take as a tacit admission that PMR lasts longer than they usually admit to. However - you have to get that low without an increase in symptoms. You aren't heading relentlessly for zero - you are looking for the lowest effect dose. That isn't the same thing at all.

[ParsnipSoup]

My Rheumatologist said to stay on the dose which keeps you comfortable. My Mum could never get below 3mg and my Sister has been on 5mg for years and has no intention of trying to get lower anymore. I am on 5mg now and going to stick there for the time being.

Neither Mum or Sister suffered bad effects from Preds. When I think of Mum the Pred kept her mobile and pain free in her later life.

[DevonshireDumpling1]

Hi Golfbarmie. Last year I had two flares, each happened after trying to reduce from 4mg - 3mg prednisolone. My rheumatologist then put me on a maintenance dose of 4mg and told me that the problems associated with steroid use would be minimal at that figure.

He said that it's not a race and that if I want to try reducing in the future I should wait until the weather is warm and my life is ticking along quite nicely in all other aspects, ie. stress free. He also said that occasionally I might need a tad more - I think he trusts me to be sensible about it though!

This last year for me has not been stress free by any means so I am still on 4 mg and managing nicely most days.

That"s worked for me and I hope that you find a balance that works for you as well.

All the best.

[arvine in reply to DevonshireDumpling1]

Hello, I am interested in how long it took for you to experiencing a flare, and what method of tapering were you using, when you had these flares, I,m trying to taper from 5 to 4mgs, and after using the dead slow method of tapering, for couple weeks, down to 4 for 4 days, then 5 for 3(which now my rheumy insists I stay there, don,t taper any more), I have been having muscle soreness, stiffness in glutes, ham strings etc, rheumy now wants me to stay at these dosages, but due to diverticulitis, antibiotics etc, situation,

[DevonshireDumpling1 in reply to arvine]

Hi Arvine, I had tapered uneventfully from 15 mg Prednisolone (diagnosed September 2019) and when I reached 10mg I was told to slow down the tapering and only reduce by 1mg every 2 months. First flare started 1 - 2 weeks after I reached 3mg so I went back to 4 mg, stayed there for a while and when I felt good I had another go at a slow reduction to 3mg.

Same thing happened, another flare, only worse this time and in retrospect I was very lucky to have been able to sort it out with a modest increase to 5mg. I did a slow reduction back to 4mg and that's where I am still.

The very fact that my rheumatologist advised me to stay on 4 mg has taken away any pressure I was putting on myself to carry on tapering through discomfort. I felt as though a huge weight had been taken off my shoulders.

I will be having another go at a reduction but it will be only 0.5 mg over a 2 month period and only when I feel ready, hopefully in the near future.

I hope you feel better soon, PMR is a real pain in the butt isn't it!

[squashie]

"I am questioning whether I am suffering from wear and tear injuries which most 76 year olds are subject to. Years of sports wearing down the old joints."

I found that once I got down to about 5mg , the old aches and pains started to resurface. But they were different from the PMR symptoms - more weather / activity / food related (steak for dinner = achy joints tomorrow). And the lower I got the more the differences were discernable.

I'm now at zero plus 4 weeks (but who is counting?) Some less clear aches seem to have resolved over the 4 weeks - I suspect it's pred's last farewell .

As we finally come off most covid restrictions this weekend I'm looking forward to getting back on the squash court. No doubt that will give my 81 yo body a bit of a wakeup call, even though I've managed to maintain a fairly rigorous training program. Fingers crossed - those that can cross that is!

[petros31]

I have been on pred for about 10 years now. Had a biopsy for GCA when at 3mg , negative, but it has taken over 4 years to get down to 5mg. Very comfortable, no pains, so why bother (at 90) about lower 'targets' when 5mg could be top of the safe-ish zone, knowing that 2.5mg is recognised as OK.