How good am I supposed to feel on prednisone - PMRGCAuk


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How good am I supposed to feel on prednisone

Navion profile image
30 Replies

I have been on 10 mg of prednisone for 2 weeks. I certainly feel much, much better. The pain is gone from the hips and thighs, collarbone, and much of my shoulders. I still have pain (maybe level 3 now, down from level 7 before prednisone) at the top of my left scapula, both scapula when leaning against a chair, and in my back between my shoulder blades. Some days it hardly hurts there (level 1); other days it's a 3 or so. I still have some stiffness in my neck ( all day), and on some days some hip, leg, shoulder stiffness in the morning for about 4 hours. On other days I have little or no stiffness. I can now take walks, ride in a car, get out of bed and chairs with no problem, and actually take my shirts over my head. Am I supposed to have no pain or stiffness? I really don't want to increase my dosage because I just got my bone scan back and it says I have osteoporosis (t scores of -1.5 neck, -1.5 hip, and -2.5 lumbar).

30 Replies

Hi Navion

Welcome! It’s unusual to start at 10mg usually 15mg & sometimes 20mg

First thing l’d like to ask, is are you resting or are you trying to catch up on tasks not completed while you have been unwell?

It’s so easy to get excited & think you’re cured but it’s only the Pred dampening down the inflammation.

Did your GP/Doctor recommend starting on 10mg?

Kind Regards


Navion profile image
Navion in reply to

My rheumatologist started me at 5 and said I could go up to 10 before seeing her in one month. 5 helped a little, 7.5 helped quite a bit and 10 is somewhat better than the 7.5. Not sure why she started me off low, except that I'm very thin and have other concerns, like glaucoma. Plus I was so reluctant that to go on it. And yes, I probably am doing more things than I was a month ago. I probably just keep more busy than before.

in reply to Navion

You have to give your body a chance to heal as well navion. Try to ease the busyness. You are using muscles that aren't being repaired and energised as usual.

I can understand your Dr concern given the glaucoma but if you don't feel better what the point. As pmrpro says (in not quite the same words!) the dripping tap of inflammation is filling your bucket of pain. You haven't been given enough pred to empty that bucket so it fills quicker. Bucket of pain...sounds like a johnny cash song.

Hope you feel better.🌻

Thelmarina profile image
Thelmarina in reply to

Love the dripping tap of inflammation is filling your bucket of pain 😂😂😂. I’ll remember that!

HeronNS profile image

Your only t-score which puts you just on the border of osteoporosis is the -2.5 for lumbar spine. Your neck and hip are fine. I had a t-score of -2 femoral neck and improved that to -1.6 while on pred, without any bone medications.

There's no point taking pred at all if you don't take enough to clear out the inflammation. There's a lot you can do to mitigate any potential side effects. Many of us have not put on weight, some of us have even lost weight. We can control our blood sugar through diet, and prevent bone thinning through diet and exercise and a few judicious supplements.

On the other hand, it sounds like you are doing very well even with the low starting dose of 10 mg. Would you consider increasing that to 12.5 for a few days if you don't want to go as high as a more standard starting dose of 15? It might be just enough to get rid of that last bit of pain, especially the stiff neck. After a month or so with your symptoms as controlled as they are going to be you can start a slow taper. If you are careful with the taper, and the other things you can do to help your health, you may be at a very low dose within a year, where the risk of side effects is even smaller than it is anyway with the moderate dose we start at for PMR. The important thing is to deal with the inflammation well at the beginning, and then be very careful not to rush the taper. "It isn't slow if it works" says our guru, PMRpro.

Navion profile image
Navion in reply to HeronNS

According to at least one study, they found that a starting dose of around .19 mg per kg of body weight was a good starting dosage. At 53 kg, that would put me at 10 mg.

in reply to Navion

Can you link the study up please. I would be interested in reading that. Thanks.

MamaBeagle profile image
MamaBeagle in reply to

That's the rule my doc in France used. He was a tad generous rounding my 56kg to 60 and starting me on 30mg, just for a week! But boy, did it clear the inflammation!

Soraya_PMR profile image
Soraya_PMR in reply to MamaBeagle

Then his maths needs some work! 😂🤣😂🤣

0.19 x 60 = 11.4

(0.5 x 60 = 30)

But I’m all for clearing inflammation 👍🏼

in reply to Soraya_PMR

My god I would need a daily wheelbarrow full on that basis. 🛒

in reply to Navion

I understood weight to play a part in dosage when tapering etc but I thought it would have other variables in the efficacy of pred. For example, suggests:

Other factors also need to be taken into account and include:

1. How much and how often you have taken the drug.

2. Your metabolic rate – a slower metabolism will increase the time a drug remains in your system.

3. Your age and health – older age and poor health will generally increase the time the drug stays in your system.

(As well as )

4. Body mass – generally the bigger you are the longer a drug will remain in your system.

Obviously....other overviews and views are available.

PMRpro profile image
PMRproAmbassador in reply to

Don't forget disease activity - more activity will require more pred.

HeronNS profile image
HeronNS in reply to Navion

Ah, but you started with only half that. Could have made a difference. By this calculation I should have started at 9.5. Nine was where I felt pain returning on my taper from 15 and needed to start a very slow taper. As I said earlier, I was only above 10 mg for two months. In that time the inflammation was completely controlled and I was able to taper successfully, after that hiccup at 9 mg, to 3 mg within the first year of being on pred. I believe this enabled me to achieve a lower total intake of pred than having to struggle for longer with lower dosage.

Of course I have no way of knowing if starting at 10 would have given me the same relief as starting at 15 and I remember at the time wondering whether I'd been started at too high a dose, simply because my earlier tapering was so easy. In retrospect I think the two months at dosage between 15 and 10 was beneficial. I did have side effects, one of which was increased ocular pressure, but that decreased back to my normal within a few months, in lockstep with the taper, actually.

HeronNS profile image

Oh, and the standard response to "how well should I feel" is AT LEAST 70% better, but most of us can achieve something better than that. I found all my aches and pains went away, even the non-PMR ones, although they crept back fairly quickly as I tapered. I started at 15 for about five weeks, and had tapered to 10 by the end of the second month. After that I tapered much more slowly, no more than 1 mg per month, or six weeks, and eventually .5 mg tapers. I was at 3 mg by the end of the first year. Success does also depend partly on how well an individual metabolizes pred, and we are all different, so I give my experience only as an example. Others will have had different journeys.

Yellowbluebell profile image

My journey began in Oct 18 and 15mg pred. My gp wanted me to stay at that dose until Jan when I saw rheumy. I started a very slow taper after advice from both rheumy and gp in Feb 19 and i am only just ready to go down to 9mg now although I am just delaying this until I move house next week! As HeronNS has said we are all different but the slower you taper the more likely you are to avoid flares.

HeronNS profile image

Here are some accounts on a different forum:

CT-5012 profile image

Hi, I wouldn’t worry too much about glaucoma, I have it in both eyes and have both PMR & GCA since early 2016 so was on 60mg of pred and have had two changes of eye drops before the glaucoma became stable about two years ago. As others have said, rest is a very important part of your treatment, no running around like the Duracell bunny! All good wishes.

There are a few that kindly stay to help and advise, but I suspect many walk back into something approximating their old life and keep their fingers crossed that remission continues. I understand why people would "disappear". Not everyone has the wherewithal to carry on being reminded of several years of their life that were painful and often miserable. Thanks to those who stay with us and the encouragement and light at the end of the tunnel they provide. 🌻

Oxford8 profile image
Oxford8 in reply to

Yes thanks to the stayers! 👍🌷

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

That’s why I, and a few others are always here! But it would be nice to have more “remissioners” to bolster the pack!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I have noted that GCA-ers are more likely to hang around.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Perhaps because we appreciate that we came out the other side relatively unscathed (or maybe not - watch this space!) - and to say thanks to all those that helped us!

Or perhaps we’re just like those party guests you can’t get rid of at the end of the night 🍷😳

GOOD_GRIEF profile image
GOOD_GRIEF in reply to DorsetLady

When you come to visit me, come early and stay as long as you like, Lady Dorset. You're a flippin' riot!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to GOOD_GRIEF

Be careful what you wish for! 🤣😂🤣

GOOD_GRIEF profile image
GOOD_GRIEF in reply to DorsetLady

We'll go to the beach with a gallon jug of some kind of boozy drink and a cooler of shrimp.

What could go wrong?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to GOOD_GRIEF

I couldn’t possibly imagine.......or perhaps I could 🤦🏻‍♀️😳

PMRpro profile image

Only the lumbar score is osteoporosis, the others are osteoepenia, actually the same as mine are, and perfectly normal for our age. My bone density hadn't changed in 7+ years despite being on above 10mg for much of the time. It isn't inevitable.

It is impossible to answer your question since everyone is different, some are pain free, others are not, but you will only be pain-free if you start at high enough a dose to clear out all of the accumulated inflammation to assess what is "pain-free" for you, removal of the PMR pain shows what else is present that pred doesn't help. That is your guideline and then you reduce slowly to find the lowest dose that gives the same result.

At a guess your morning pain might be helped if you split your dose or took the entire dose at 2am - as it is the PMR inflammation is being boosted about 4am and then you are having to wait until the pred gets into the blood and takes effect. The longer after 4am you take it the longer you will have pain. And if you kept a diary you would probably find that the bad days happen after you have done a lot the day before, the good days after you have rested and done less.

daworm profile image

I started at 15mg but had to go up to I'm down to 5mg and while the initial dose seemed a miracle, I have always had some stiffness and even pain and lethargy on certainly helped...a lot...but its not a miracle only a tool to fight the PMR..

PMRpro profile image
PMRproAmbassador in reply to daworm

Miracles aren't always 100%! I bet you'd think it was still a miracle if you couldn't have it!

Navion profile image

Thank you all so much for your responses. I am so grateful that I found this group. This is not a fun road to be traveling down but it is really helpful to have support from this group.

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