After little bit of advice as feel bit stuck with what I should or shouldn't do. I started on 15mg Pred on 8th April. Cut down to 12.5mg on the 8th May. Had bloods done couple weeks ago and Doctor has said to now try 10mg. Bloods showed ESR and CRP levels dropped to 11 and 13 (not sure which way round though 🤔)
I delayed by week as hadn't been feeling as good as I did (probably because I've felt better and then just carried on as normal - not over exercising as I've never done that). But decided I should start so did first day today on 10mg. Doctor says if I start to flare then will put me back up.
Question is how long do I give it or if I don't feel as good tomorrow or next day do I just up it on my own or check in with doctor? Seems silly question but I'm one of those 'I don't know???' people as don't like to make a fuss or not sure if I should question (if that makes sense)
Thanks 😁
Written by
Shiba64
To view profiles and participate in discussions please or .
Can you possibly taper by 1 mg at a time, instead of 2.5? At this level such a taper is very likely to give trouble. Rule of thumb is to taper by no more than 10% and as you can see, 2.5 is 10% of 25! There should be no rush to get to a really low dose. You are more likely to succeed with a taper if it's done slowly in small steps, and with a far lower risk of flaring. The whole point of a slow taper is to avoid flaring. This slower taper is almost certain to result in a lower total intake of pred than permitting flares and then raising the dose again.
At this point 1 mg tablets are very useful.
Also, once you are successfully at 10 mg, you should seriously consider using one of the slow taper plans we suggest and you will definitely need 1 mg tablets then.
Ah thanks I did wonder as have read lots of the threads in regards to reducing. I did feel like I was ready a few weeks ago but with various issues with getting appointment with doctor a couple weeks passed by. I've got a lot going on and wondered if that had caused me also not to feel as good? Don't get me wrong I'm not in any serious pain or anything like that just what I'd call uncomfortable.So hard to know also how you should feel at set doses as well.
I find it a really hard condition to comprehend - when I first got really bad with it I just kept walking round (well waddling as I called it) saying 'this is just... ridiculous` 😂😂
I just think there are probably people worse off than me so just try to get on with it 😁 But this forum does help no end 😘
I think people are sometimes diagnosed partly on the basis of the penguin walk! I saw an acquainance one day on the other side of a parking lot and when she walked I thought at once, she's got PMR! Unfortunately she was getting into her car and driving away so I've never had a chance to find out. I do remember a couple of times my former doctor obviously made a point of calling me into the office, rather than the receptionist sending me in, so she could see how I was walking!
Yes, there will always be someone worse off, but you deserve to feel as well as you can.
Ha ha I never thought of it as a penguin walk but yes that's it described perfectly!! Thankfully I've got past that but if I I'm having an off day I can easily slip into that walk without realising and my husband can tell without asking.
I think as well because it's still such a new thing have to work between is this a PMR symptom when I'm feeling something hurting or stiff or how I might have felt previously after doing something?
"So hard to know also how you should feel at set doses as well"
There is no answer - 10mg for you may be plenty, but way too low for me and far more than they need for someone else. There are a lot of individual factors involved - from disease activity to your personal reaction to pred.
Yeah that makes sense also in addition it depends on 'us' as individuals. As each person will deal with whatever in different ways. I was very low from mental point of view before I got diagnosed but then once I did I felt so much better.A physio once said to me, pain & discomfort are like emotions - and everyone deals with them differently. He said I could have worse case of arthritis than another person but I could cope better. Again a good bit of logic. And I so like logic 😁😁
When you say you don't feel as good as you did - what do you mean? PMR-type symptoms or something else?
Even using a 2.5mg step now, I would use one of the slowed tapers. Discomfort that starts immediately you change your dose is probably your body protesting at the change in dose and not getting what it was expecting. Flares because the dose is now too low usually take a few days to manifest. But it is easier when you slow the overall change down
Ah I mean I was staring to feel a lot more normal again as to how I was when I was diagnosed. I never really suffered with pain but the severe stiffness in arms and legs was incredible. That got do much better and was really feeling much better then started to feel not as good. In myself fine just the body not as flexible! But guess still early days.I'll give the 10mg chance and see how am in few days and if not try the tapering off?
One of the first things I notice if I start to flare due to too little pred is the stiffness - stairs are a very sensitive measure: it is harder to go downstairs and coming back up becomes progressively harder through the day as I tire more.
I've always said I'm back to front on a lot of things - quirky is my middle name I think 🤣🤣I find coming down easier than going up. I was doing one foot onto step them next foot onto same and so on. I do same coming down. I now walk up normally though can feel the muscles in my thighs complaining but they don't after so guessing that's good. I still come down the one at time though.
Also I find I'm worse in morning up til about lunchtime then gradually get better through the day/evening.
The day I took my first 15mg at 10.15am I was walking like a toddler, stomping down stairs and crawling up on hands and knees. At 4pm I stood up from the computer and walked downstairs to get a cup of tea and walked back up carrying the mug normally. That only ever changes if I am on too little pred.
It took a bit longer* for me but l was suddenly walking with speed back in high heels 👠 & making sure everyone knew l was back! 😂* about 10days to be back to ‘Me’ but everyday there was an improvement; l did have a ‘Frozen’ Shoulder as well & that eased up too!
I used a 4 week taper plan every time that I reduced my dose. I think that our bodies are very 'in tune' with the amount of steroids in the system and a 'cliff edge' drop - even if it is a small drop seems to me to be a recipe for a reaction. If there is a way of minimising that reaction, then why not do it? It worked for me every time with no flares (over 2½ years from 15mg to 0mg).I once or twice had to return to the higher dose for a couple of weeks before the end of the taper as I could feel symptoms gradually building but if you are tapering rather than doing a sudden drop, then that's quite easy - just stop the taper and remain on the original dose.
As you've probably seen elsewhere on here, if you are on Pred, then your blood results should be better because the Pred is doing its job in reducing the inflammation which (I believe) is what the blood test is looking for. But the PMR is still there working away so don't think that it is 'cured' just because the Doctor says that your blood results have improved!
Ah yes I've read about the levels are down because of the steroids doing their job and not because it's gone away. I've started the 10mg and will see how I go but if any issues will go back. I know doctor said that's what he'd do if it did so at least I know he's in right page. But will definitely discuss with him about the tapering and tell him that's what is suggested by the experts i.e. You that have trialled it and it does make logic to me.
I was on antidepressants years ago and the doctor did the tapering off way and it worked.
😁
My best advice would be to try the best you can to taper DOWN the steroids and (as I was told by my doctor) go slow and go low! Steroids are HORRIBLE for side effects (believe me, I KNOW) as I've had everything you can because of side effects (Diabetes, Cataracts in both eyes, high blood pressure, hallucinations, ringing in ears, brain fog, weight gain, to name just a few). I am a lifer on steroids as we've tried (me & my Rheumatologist) to taper down and the lowest I can go is where I am now 2.5mg. My adrenaline gland has completely shut down resulting in a maintenance dose of steroids for the rest of my life.
Ah bless you, you certainly seem to have tthem all 😘 Thankfully I've been OK so far but only been on them since April. I had lost weight before being diagnosed but have put that back on since being in the steroids 😒 But hopefully won't have too many issues. Doctor says have to so slow so glad he's on same page. Told me 2 months in 10mg (unless I flare and then back to 12.5mg) so will see.
Guess the body gets used to the steroids and then in end the natural way of your body just forgets how to work 😒
I guess as long as you're not struggling from the PMR, that's one positive 😊
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How long to stay on 10mg prednisolone?
Back at 10mg what to do now?
Dropping down from 2mg to. 1 1/2mg prednisolone. 
Drop or not...
Should I go back up to 10mg preds from 9?
