Well I have already posted my history, although I should maybe update my profile to date, but now I have decreased fairly quickly, as per rheumy,s instructions, since Dec at 40 mgs, (due to suspected GCA), which apparently did not show in temporal ultrasound, at any rate, now down to 10 mgs, for this last week, he had instructed to taper 5 mgs each drop until I reached 10, but I have noticed, these last few days, this week, stiffness in mornings when getting out of bed, really bad in back (which is already compromised with several issues, stenosis, bulging disk, osteo, degenerative), so wondering , could it be the last drop to 10 that,s caused this, or osteo and stenosis progressing worse? I am getting referral to pain clinic , not sure how soon that will be for appt, so my plan was to taper by 1 or .5 a week from now down to 9 or 9 1/2, not sure if I should, also, I have always used the dead slow method, not just dropping 1 or 1/2 mgs after few weeks on new dose, like many of us, so many questions, so unsure, frustrated, depressed etc, , stiffness in back last few hrs, but it seizes up with pain, after standing ,working in kitchen, cooking, cleaning etc, walking , only after about 10 min of any of these activities, it is getting me down, don,t know if I still have Pmr, or if the back is the biggest source of problem and pain right now,, can only take tylenol, barely touches any pain I experience, if I wasn,t on Pred, I think advil , aleve would probably give some relief, but can,t take it, long post, I will check my profile, see if current issues on there, thank you
Stiffness when tapering: Well I have already posted... - PMRGCAuk
Stiffness when tapering
It sounds very like you may be reducing too fast. Under 10mg the fastest you should go in my opinion is 1mg a month and I reckon ideally 0.5mg.
Yes, I agree with Piglette. That last 5 mg drop was too much. It was a third of your dose. Recommendation for PMR (or GCA once at PMR doses) is no more than 10%. You definitely should not taper at all until you've sorted out the cause of your pain. It could be recurring non-PMR symptoms, but it is best to be cautious. There are a couple of ways you could go. One is to go right back to 15 and see if you're good again, then taper by only 1 mg at a time. Or try the next taper to be 2.5 mg, although I personally think even that could be a bit risky. A much slower taper may well help you to go below 10 more smoothly, but continuing a fast taper is likely to lead to grief. Certainly side effects are much less at 15 or 10 than they were at 40, so your doctor should be less enthusiastic about fast or too large drops.
ok thank you, well Im reluctant to go back up, as I am at 10 now, but maybe will stay there for more than 2 weeks? maybe 3 or 4 weeks?
Completely understand. It is a bit disheartening. I had to go to 10 mg for a flare in early 2021 which was very upsetting as I'd not been anywhere near that since 2015! But in the end it turned out to be the right thing, and I did have to taper a bit more slowly down than I wanted to. I'd been at or around 2 mg for years, with a brief and unsuccessful flirtation with zero in 2020. Seem to be okay at 1.5 now, but not rushing anything, and it did take me many months to get back down to 2 from that 10 mg high. Just kept telling myself that untreated inflammation would be worse for me than a little extra pred. 
Taking pred was helping my osteoarthritis & masking it. Therefore, as I got lower, there was no help from the steroids, & my osteoarthritis was much worse. But not worse, just more obvious to me as the drug that was helping it was lessened! It’s continued to be so. I thought it was a bad flare last year, Dr put me back up, & pains in back, hands & feet were better!! But mine was pain from other issues, not PMR! Took me ages to taper a second time from 10mg.
Interesting, if the pred helped your pain, how did you know it wasn't from PMR?
The osteoarthritis is in back, hands, feet, mainly, a little in hips. My PMR pain has always been in shoulders, across the hips & in the pelvic region…mainly! Just a case of learning your body pain by disease!! Eg I get pains in front of neck from fibromyalgia. I get neck pains from four past car crashes!!
Bad luck or what?
I'm struggling to know if my pains are PMR related or not, as I was slowly developing more and more pain in the two years before diagnosis. Lots of tendonitis, muscular back pain, knee pain etc. Pred put paid to all of it, but now, at 5mg, some is coming back. Tests prior to diagnosis showed no arthritis, just inflammation.
I’ve no idea how old you are, but I’m 66 & didn’t expect to spend 3 years collecting diseases! It is tough sometimes to know what pain relates to which disease! I feel my OA has worsened very suddenly, but realise it’s because I’ve been told to get of steroids asap, so my tapers are quicker…& also because of that I’ve spent more brain than usual fathoming out what is causing what pain!! Now I have bursitis & sciatica, but 5hey are easy to work out as the pain is so acute! Good luck!
Thanks! I'm 64 but have had back trouble on and off for years, since my early 20s. I discovered what sets it off and avoid: sleeping on a hard bed, carrying or lifting anything too heavy, getting in and out of a car without enough care, bending for any more than 5 minutes, basically doing anything for longer than half an hour. By avoiding these things I stayed pain free for years.
Interestingly a friend with fibromyalgia learnt to do the same at a pain clinic.
oh! I didn’t mean you had to write your age…interesting, though, much the same! Hm. Hard, though, I’m a bit of a control freak, in the nicest way, I like to know what’s wrong! My back had an MRI…I have a haemangioma, but no surgery suggested, thankfully! You’re right, though, knowing your limitations is good! S x
Regarding getting things done, I think that years ago doctors weren't bothered to investigate such things. On various occasions I was told to rest (but lying and sitting never help), do yoga (made things much worse and now actively avoided) or dig the garden! No suggestion of investigating why, though one GP got me to bend over and said some of my upper lumbar vertebrae are fused. That explained why yoga does me in. Probably caused by falling off a horse when I was 21. GP at the time just told me I was lucky not to break my neck and to take paracetamol. She didn't even examine me, though I was in agony and could barely walk. In those days you didn't make a fuss!
Interestingly, a friend of mine who developed PMR less than a year ago and has now reached 3mg!! has told me exactly what Pixix has described. Her OA has come back and she recognises it as such. She says she had a blessed relief from OA pain while on a higher dose of steroids and considers she had a blessed time (it's the only way to describe it) while the steroids helped.
My friend is fairly desperate to come off steroids (aren't we all!) and I just keep hoping and praying nothing goes wrong for her. I really DO wonder though but 🤞for her. She is not a member of this community, btw. Her PMR was in her upper arms and the reason I'm concerned is that she did mention some 'twinges' in that area recently.
I think the only bad thing is that during 5he past year I didn’t use all my splints & orthotics like I should & could have done further damage! But now I’m splinted…still not behaving. Though I have taken the afternoon off from painting the gazebo!!
Same. Tapering down from 60 mg. since GCA scare in Jan. 2023. So far down to 35 mg. but pains in biospy area and along hairline have returned. Mid back up through base of neck. Also again, put my back out (left side this time).
Upped it to 36 mg. last night but reluctant to go backwards. Will start a slower taper at 20 mg. and hopefully get back to 14 mg. where I was in January, and then the dead slow taper.
My thoughts...you're tapering way too quickly. It's quality of life that counts as well as keeping that inflammation down. Not a race to see who can get to 5-10 mg. which may cause a whole other Pandora's box of adrenal issues. We all want off of Prednisone, but at what cost?
although I understand the need for speed, I have put on about 6 kilos from the damn prednisone I can’t seem to get rid of it!
Last weigh-in I hadn't gained all that much. 12 lbs since Jan. 22, but it's all shifted upward. So now I have big gut, donut neck and huge moon face (my glasses cutting in by my ears). I had them adjusted but still too tight. We all want off the Pred, but the trade-off is "drop in the bucket" inflammation which builds up and overflows and then a flare, if we taper too quickly. I try to keep low carb and low sugar, but it's a fight...or a test.
I tapered off prednisone in Nov thinking NSAIDS will suffice. I was wrong. I take celebrex 200mg twice per day with 2 grams of Tylenol and nothing.
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