PMR Prednisone Dosage...

[remission]

I know everyone is different and bodies react differently to drugs, but I was just wondering what dosage of prednisone people were at by the 7 month mark.

[HeronNS]

It also will depend what the starting dose was. I started with 15 mg June '15 and was to 7 mg January '16.

[Meggsy]

I started on 15mg 26 Feb 2018. Increased to 25mg April 4 as still experiencing some pain and weakness in left arm. Five months later (September) was at 10mg but couldn’t get to 9.5 till December - 8 months. Slow .5 decreases since. Presently on 5mg - 20 months.

[squashie]

Started at 15 in October 2018, down to 6.5 seven months later. Now at 3.5 with fingers crossed.

[remission in reply to squashie]

shall keep my fngers crossed for you too... may I ask, do you have any pain on 3.5 or at 6.5 and if so what level was it at? Not sure what I hope to find frm gathering this, but it might be helpful to us all.

[squashie in reply to remission]

I've been lucky - almost no pain at all. My initial symptoms were incredible bilateral shoulder and hip stiffness, but even then there was virtually no pain.

[Arflane97G]

Not quite at 7 months but was diagnosed with pmr in September, starting dose 15 mg, now at 8 mg

[Toes55]

Not at 7 months yet. Started mid August 2019 at 12.5. Have just started a s-l-o-w transition to 6mg.

[nickm001]

Dose is the reflection of underlying PMR activity. You need as much prednisone as to properly control inflammation caused by PMR. Everyone is different and PMR activity varies even for same person. You are not trying to reduce to zero regardless of symptoms. There is no point and usually that results in a flare and going back up in dose and sometimes to starting dose or even higher.

Dose about 7-8mg is somewhat critical because it equals to what body normally produce. As you go below that level, your adrenal glands need to make some to cover defficiency between your dose and 7.5mg . That process takes time, so lots of people need to stay at 6-8mg dose for extended periods. Just be patient and pay attention to your symptoms. Average PMR lasts 5.9 years and only 25% get off prednisone in 2 years or less. Seven months is short period.

[Nancydk in reply to nickm001]

Wow! Where did you learn all this? It’s very helpful.

[Boss302Fan]

The clowns started me at 80mg/d for 2 days (ER + 1 day observation) then prescribed 60mg/d on 6/19/19 and gave me prescription for 100 tablets (0 refills) of 20 mg Pred and a Rheumy to contact for managing me with the disease. Unfortunately, then earliest he could see me was 90 days out (do the math, right not enough pills). Finally found one, but had to get testy with my GP’s office staff.

I’m now in week 2 of PL Simple Taper where old dose = 12mg and new dose = 10 mg. I’ve had one flare-up / relapse.

7-month mark...

50 mg by 7/19/19

Then figure 10mg reduction every 2 weeks until I reached 30 mg/d

Then figure 5 mg reduction every 2 weeks until I reached 20 mg/d

Then figure 2.5 mg reduction every 3 weeks until I reached 10 mg/d

Then was supposed to do a 1 mg reduction every 4 weeks until I reached 5 mg when I was supposed to do 0.5 mg reduction every 6 weeks.

BUT, after being at 10mg/d for 2 weeks had a major relapse. That day I added 2.5mg to my dose (to 12.5mg). Next day still in pain but less, I increased it again by 2.5 mg to 15mg/d, and based on how I was the next day increased it again by 1 mg to 16 mg/d). That got me back to being pain free. I notified my Rheumy via the portal and he told me to start splitting my dose in half and taking it 2x/d. I stayed at 16 mg/d for 5 days then switch off the reduction plan to PL Simple Taper. Using 2 mg tapers. Once I get to 10 mg for over 12 days I’ll continue the taper using max taper of 0.1 x old dose.

If I relapse I’ll increase back to where I was fine before.

[PMRpro Ambassador]

It depends on the starting dose - can very commonly be anything from 15 to 25mg. And on how much the person absorbs of an oral dose - that can be between 50 and 90%. And on the activity of the underlying autoimmune disorder - more active means more inflammation and needs more pred.

Whatever stage you are at in PMR/GCA there is little point comparing yourself with others - just as each of us can manage different amounts of activity we all have different tapering journeys and comparing yourself to others may make you depressed.

[Blearyeyed]

Absolutely agree with Pro , and will sound a bit Mumsy here.

You said it in your question , everybody is different , not just in starting doses but in their progress with PMR or GCA because of the severity of the Condition itself , or because of other Health or Stress related issues that they also have to deal with.

It is dangerous to get in to the realm of comparisons on something as specific as doseage , as dangerous as trying to force yourself to Taper by an over rapid Timetable that doesn't take into account your own individual needs.

You could make your Taper more difficult and slower by beginning to try to work to levels more commonly reached by others , or worrying if you have already reduced beyond that level . Being Anxious that you are not on a specific dose by a specific time frame creates Stress , Stress creates Pain , so trying to race to get there will possibly cause a Flare or added Pain.

Better to concentrate on the more important numbers like how low your Pain Scale is and what dose reduction works better for you to have an easier time as you decrease. And Positive numbers like the amount of days you have had virtually pain free , or how you have been able to increase your footsteps and minutes of activity without getting Fatigued.

[DorsetLady PMRGCAuk volunteer]

I know you are looking for reassurance- but it’s a bit of a pointless question really - sorry if that sounds harsh, but it’s the truth.

You cannot judge your progress on others - too many variables as already explained, and as you said yourself everyone is different, as are their circumstances.

What you need to concentrate on is you, and how your illness is controlled - the actual level of Pred in numbers terms is secondary.

[Nancydk]

It’s all pretty confusing. I’m on 5 mg but honestly don’t feel it’s enough. But I don’t tolerate too much more without side effects. So it’s a balancing act for me.

[Yellowbluebell]

I have a gp that left me at my starting dose for over 2 months before tapering and rheumy was quite happy with that. It working for me but its a big difference to most peoples start and taper. Everyone of us will do it a different way even if we start off the same way

[PMRpro Ambassador in reply to Yellowbluebell]

The best authors suggest at least 6 weeks at the starting dose - you weren't that much longer.

[cranberryt]

Everyone has their own journey. I started 20mg in July. I am at 6 months and down to 7mg. My rheumy pushes too fast. I have been at 7mg for a month now because I do have stiffness and pain in the morning and during the night. I should probably go back to 8 but I know 7 is that critical juncture for getting my adrenals to kick back on so I hesitate to go back to 8. Bloodwork on Friday and we will see. My journey has been faster than most so far so I am trying to keep a healthy mindset about being stuck here at 7 right now.

[remission]

thanks for responding to my question.....I am well aware everyone's journey is different and it isn't about comparring etc., it's about collecting data, because although we are all very different, sometimes when you look at data you find a common thread amongst it all that can be very helpful......you mentioned stiffness at night & early a.m., are you totally pain free during the day?

[Cyclegirl54]

Started at 10 mg March 2018, by Dec 2018 40 mg(GCA ) dec 2019 13 mg soon to be 12 mg!