What is the ideal Pred dosage?

[christi48]

Is one supposed to take enough to completely eliminate pain and stiffness or is it OK to settle on a dose that is lower so that pain and stiffness are just a slight annoyance?

[Grammy80]

I have GCA and not PMR....I'm in the states like you and many knowledgeable PMRers will respond when they've had a nights sleep. For me, the ideal dose is whatever it takes to get the GCA to go into remission. I'm on my lowest dose ever and it took 3+ years for me to get to 3.5 mg. So much will depend on your personal history. Best wishes 💞

[Merryfield]

I have the same question. My right shoulder is ever more symptomatic over the last few weeks but am already at 20 mgs medrol (=25 mgs pred), down from 40 mgs pred in November. Have been at current level for six weeks. I have plenty of steroid side effects already, like diabetes and elevated bp requiring double meds. And at the higher level, I was unbearably shaky. Should I put up with shoulder ache or go back up with steroids??

[DorsetLady PMRGCAuk volunteer in reply to Merryfield]

If you are sure your right should is PMR [pains are usually bilateral] and it may be, because I am aware you have been under a great deal of stress recently, then it might be sensible to go back up to previous dose where you didn’t have that pain…

Reducing from equivalent of 40mg Pred to 25mg within 3 months is quite quick [although that is a high start for PMR alone].

Think you maybe should contact your Rheumy and discuss.

[Merryfield in reply to DorsetLady]

Thanks D L and all. I see doc next week and will discuss with him. My PMR started in right shoulder, then went to left within a week and at three weeks, froze my right hip. Never felt it in left hip. Will discuss going up a bit on steroids to see if right shoulder pain goes away. Man, I am hating steroid side effects.

[Boss302Fan]

That depends on how far you are beneath the optimum dose. If it’s just a twinge and either doesn’t increase or decreases over time, no problem. If it increases then you need to increase the amount of Pred you’re taking as each increase in that “twinge” equates to additional build up of inflammation which you want to avoid. Excessive inflammation can damage the muscle tissue.

My approach was if I felt a twinge during the day of the decrease, that didn’t get worse as the day progressed, I’d ignore it for 24 hrs. If it increased during that day, I’d add back the difference to equal the old dose that same day. If it was the next day and the pain had increased, I’d do the old dose until pain gone and then if possible half the step and try again. My goal was zero or near zero pain. The lower the dose and smaller the step the more lead-way you have in responding. I did not attempt to go lower. I chose a step and went 5-7 weeks before another decrease, this is not a race.

[christi48 in reply to Boss302Fan]

Thank you!

[DorsetLady PMRGCAuk volunteer]

Are you talking about your initial dose, or each dose as you reduce?

Most of the paperwork indicates that you should get at least a 70% improvement in pain initially- but many get 100%… and that really is your benchmark.

Ideally you should not feel any worse at each reduction than you did before you started that reduction - does that make sense?

The major problem with always settling on a lower dose that does not relieve your pain is that you are in danger of allowing the inflammation to slowly build up again, and one day the dam will burst….

[christi48 in reply to DorsetLady]

My initial dose was 5mg. which was so effective I thought I was cured. This is before I knew anything about PMR or Pred. My blood work showed normal inflammatory markers so I did a quick taper and thought I was done. Now I know better. So, I went back to 5mg. and felt great so decided, after six months I could try the ds taper this time. Yes, your comments make sense because I felt great at 4 1/2mg but when I got to 4 the pain and stiffness gradually crept back. Not nearly as bad as when I was first diagnosed, but bad enough to make me uncomfortable and remind me that I am still not well. So, are you saying I should always stay at a dose where I am symptom-free?

[DorsetLady PMRGCAuk volunteer in reply to christi48]

Not exactly, you do need to try and reduce…..but as your dose of 5mg was okay, it does sound as if your PMR is slightly different to many on here.

As we know it is very often easier to reduce at higher doses than it is at smaller ones, where the margin between plenty, just enough and not enough are much finer.

Maybe you need to elongate the slower taper so your body has more time to get from dose a. to dose b.

[christi48 in reply to DorsetLady]

Thank you. So, how long should I stay at 4 1/2 before I try to get to 4 again?

[DorsetLady PMRGCAuk volunteer in reply to christi48]

A few weeks... certainly longer than 2 because that's usually how long it can take for a flare to materialise...so at least 4 in my opinion.

[christi48 in reply to DorsetLady]

Thank you for taking the time to answer my questions. You pros are such a valuable asset when trying to learn about PMR!

[PMRpro Ambassador]

It depends - the pred will deal with PMR/GCA pain and stiffness. It may mask the pain of osteoarthritis and some other things but in their case you would expect the pain to remain the same if you get to a level that manages PMR but not the other things. If you are too low on pred for PMR, over time the symptoms will build up, left long enough to how bad they were at the start.

[Viveka]

Good question. I am in that situation. Found PMR at end of 2 months on 3mg (for GCA). Now on 5mg for a month after being up to 8 for a week to clear. Get regular shoulder symptoms but they are 1 or less on pain scale unless I do repetitive exercise when they let me know about it. Symptoms are irritating and remind me I am ill rather than anything else.

Having discussed with consultant (RH) I am staying on 5 and monitoring the situation with the rationale that if it is not interfering with quality of life it is better to stay in lower levels of pred. If things deteriorate I will increase dose.

Complicating factor for me was that at 8mg the symptoms weren't better and I felt really ill with inner trembling, plus got pains in sacrum and hips which (touching wood) I don't now. Go figure. So I am extra reluctant to increase.

Anyway, it seems ok to try this, though I believe this will depend where anyone is in their individual PMR/pred journey. RH assures me it isn't doing me any long term harm. I don't know about the build up of inflammation harming muscles - it is a worry. I am going to get an MRI.

Why do you ask?

[christi48 in reply to Viveka]

Because I did the ds taper from 5mg. to 4mg. and felt OK until I got to 4. After a few days I noticed the pain and stiffness were increasing to a level where I was getting uncomfortable, so I increased the dose to 4 1/2mg and felt better for a few weeks, but lately it seems the pain and stiffness have increased a bit. Mostly stiffness during the day, but hip pain that wakes me during the night. It does respond to heat and movement (I actually get up and do a few squats) but the relief doesn't last. I want to do what is best for my body and since I am pre-diabetic and have advanced osteoporosis, but have also learned from this forum that chronic inflammation can do permanent damage, it seems to be a matter of choosing the better of two evils... Thank you for your reply...

[PMRpro Ambassador in reply to christi48]

That suggests that 4.5mg is also not quite enough - but every so slightly not enough! Although, I also get hip pain like that and it isn't because I'm on too low a dose of pred - it is an add-on I think. You might find stretches for greater trochanteric pain syndrome help avoid it:

nhsaaa.net/allied-health-pr....

myhealth.alberta.ca/Health/...

Note that the NHS link does point out that initially the symptoms may get worse - you are in it for the long haul and it takes times to improve the situation so don't panic and persevere. Don't cause actual pain by doing the exercise, you are looking for a feeling of stretch, as time goes on you will be able to go further before you feel it, that is the idea.

[christi48 in reply to PMRpro]

Thank you.

[Viveka in reply to christi48]

Ah, if it helps I have heard from forum and rheumy that half a mg at low levels doesn't do body damage but can have significant impact on inflammation. Perhaps hip pain needs more investigation. If it came on with the reduction to 4 and was part of the original PMR package it may be helped by pred. But feeling better with squats suggests otherwise, perhaps - they are quite tough and repetitive exercises.

[christi48 in reply to Viveka]

Thank you.