Hello, I’m new here and been reading the various posts. My pain got so bad that I went to ER 5 weeks ago, and told them this is not Fibromyalgia! They need to do something! The NP did some blood work and my CRP was 4 and ESR was 39, RA was normal, she suggested 20 mg Prednisone. Referred me to Rheumatology which is in 2 weeks. I was on 20 mg for 18 days, and was feeling 70 % better, but it was slow, not immediate like I read. I was so nervous about being on Prednisone, I went back to NP who started tapering me down I got down to 13.75 in 5 days and symptoms started to return. So I went back to 15. Been on for 4 days. I still have some symptoms mainly in hips legs, but feeling an a little better. Only stiff on arising. Never really had too much in upper body. Since I have Fibromyalgia, I’m used to chronic pain. Since I read that normal dose is 15 I went to this, but not sure if I should go back up to 20 or just wait for Rheumatology to do all its testing, since I didn’t get an immediate relief like I read. Anyone else have a slow response to the Prednisone? Or is 18 days a normal time for the Prednisone to start working? Or should I have been put on a higher dose to begin with, in order to get immediate relief. When I read all the symptoms on here I’m almost positive PMR is what I have. Thank you.
Diagnosis and Dose: Hello, I’m new here and been... - PMRGCAuk
Diagnosis and Dose
hi and welcome,
As you are new maybe have a look at this intro/info post -
healthunlocked.com/pmrgcauk...
Not everyone gets immediate relief, but after 18 days at 20mg would have expected a reasonable response, and 70% is recognised as that. ... But the reduction from there within 5 days was brutal.
Better advice would have been another week at 20mg, and then a much slower taper [talking of which I did send you excel copy as requested - did you get it?]
Would suggest you stay at 15mg until you see rheumy - and explain to them what has occurred to date.
Yes it has been brutal. Thank you, I did receive the tapering schedule. I was thinking the same that I probably should have stayed on 20 to see if I got more relief. I now have to wait until around 3 pm to have most the symptoms gone. Wondering if I should go backup? This morning I woke up with a splitting headache, which has got me all nervous. 🥺
Splitting headache may be due to getting stressed - perhaps try ordinary painkillers and see if they help.
Maybe stay at 15mg for a couple more days, and then if no better- only option really is to try 20mg - after all that's the dose you were prescribed initially so it's not as if you are exceeding that.
Hi and welcome!
The immediate effect only happens if the dose is right - and while 15mg has become the traditional starting point, the 2015 Recommendation gave the starting dose as "the lowest effective dose in the range 12.5 to 25mg per day". Some people just need more.
A study done some years ago found that 75% of patients get a good response to 12.5mg - but it takes up to a month at that dose.
That reduction was crazy - the pred has CURED nothing. it is a management strategy and the relatively slow response suggests that at present there is likely to still be plenty of inflammation that needs to be cleared out and the resul of that reduction - that was no taper - shows that that is the case.
I would certainly go to at least 15mg - and in the light of the headache, do be watchful and if you have any other signs of GCA you may need to go back to the ER if that is the best way to get a decent dose of pred.
So glad I found this group.
glad you found us, why we are here!
18 days seems quite a long time for the pred to leap into action. Normal starting dose is usually around 15mg so 20mg should be OK although some people need to go up to 25mg. I started at 20mg and my rheumatologist got me to reduce to 15mg after three weeks and it was definitely bad news in my case.
Prednisone should have taken effect within a couple of days..I’ve been tapering from 15 mg .. for year and a half. Currently at 10.5 and struggling with slight flare. I do know, when I was initially suspicious of pmr the prednisone worked almost immediately
Prednisone should have taken effect within a couple of days
Not for everyone-sometimes takes a couple of weeks or longer
Okay, I’m was my quick response to prednisone that my Dr. Said pointed to pmr..
It makes it more likely as a diagnosis perhaps - but you only get the very fast response if they start you on a high enough dose and 15mg may not be enough though it has become the standard starter dose these days. But the 2015 Recommendations say "the lowest effective dose in the range 12.5 to 25mg/day" - and, exceptionally, 30mg.
An update: I’ve been on the 15 mg for 5 days now, and still around 70% better. I am able to do my walking stretching and household chores. But should symptoms be gone after a month on prednisone. Or is 70% what we should expect? Just trying to decide since I was 20 mg for only 18 days before Dr started reducing, should I go back to 20 as discussed? And assuming that is the correct dose, how long does someone stay there before reducing? When I take my prednisone in morning, then I take my Tylenol at 9 am I’m not really noticing a difference in pain, aching (tolerable) until afternoon?
In first reply I suggested you stay at 15mg until Rheumy appointment - as you’ve only been on that dose for 5 days it may still improve…. and you need to discuss. If you go up again, it may well muddy the waters, and gives your Rheumy nothing to work on…
If you want replies from more than DorsetLady and me, you would be bettter putting it up as a new post - we follow everything, others rarely do.
How much household chores are you doing? And were you better at 20mg?
OK that makes sense about replies. At 20 I was at about 70% still aching in hips and thighs, down to knees. I could bend over though . At 15 about the same, with added activity. But I still notice something is wrong. As far as chores nothing major, it’s just me and the dogs.😃
I think you may be expecting too much too soon. I started in 15mg, 6 hours later I could walk up and down stairs normally, not like a toddler down and actually crawling up, But it was probably 3 months if not more before the hip and groin bursitis and the pain in hands and feet was entirely gone. It is GLOBAL improvement - some things may be almost totally gone, others nothing like so much better. You have dogs - you are walking them? And some people never feel 100% back to their previous normal.
Yes, I'm walking my dogs, maybe 30 minutes. That keeps us sane. I also do some simple exercises. I'll just have to be patient until I see rheumatology.
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