Does anyone have advice for identifying if the symptoms I’m feeling are Prednisone withdrawal aches/pain or if it’s the PMR beginning to return?
At 5mg for last month, I’m experiencing bilateral hip burn, left wrist pain, bilateral shoulder aches, bilateral upper arm muscle ache, bilateral back of thigh muscle ache, fatigue. All I’m getting from my GP is the steroid will cause bigger issues, stay on taper plan. My rheumatologist says to not freak out and breath through a paper bag.
Are these symptoms PMR reoccurrence or tapering side effects from Prednisone? Feeling discouraged from the States.
Written by
lizg0017
To view profiles and participate in discussions please or .
I would say that if all those pains have returned over the last month then you have gone below the level of Pred you need on a daily basis to control things.
Withdrawal pains usually come on virtually straight away after a taper and sometimes mimic PMR pains but can also just be a feeling of tiredness/irritation/general malaise and usually disappear after 4 or 5 days when your body has adjusted to the new lower dose.
It seems that neither your GP nor your Rheumy fully understand the illness or the medication.
You certainly don’t want to increase for no reason, but no point being on a dose that is too low and not giving relief, and 5mg is a very low dose anyway in the great scheme of things.
As for breathing into a paper bag - I’d be inclined to tell Rheumy what to do with his paper bag!
Do you have enough medication to try a higher dose for a few days and see if that helps.
Thank you. Yes, I’ve got plenty of Prednisone to up the dose a little. Seems we almost have to pay attention to our own bodies and signals of change. Think I did better around 8mg. Even if I took 7mg for a couple days and I begin feeling better, that would be the tell all.
Yes you do have to listen to your own body..that’s what many doctor don’t get. I was fortunate when I changed surgeries my new GP said ‘you know your body better than I do, reduce when you feel it’s the right time’
From about 7.5mg I reduced 0.5mg at a time, and used my own slow tapering plan which took about 5 weeks to get from old dose to new dose. If I felt okay, I just went straight into next taper. If I didn’t feel right, or I knew there was to be a stressful time ahead - holidays, Christmas etc I’d wait until that had passed and then taper.
The plan the doctor has given you is that - just a plan - sometimes life gets in the way and it needs amending!
This is exactly how I'm doing my tapering and so far so good. Started off on 60mg Aug 2017 now at 8.5mg. Will stay on this for another week after the stress of christmas has passed and start again. Good luck to everyone with your PMR/GCA and wish you all a merry cjristmas and a happy and healthier 2019.🎄🎄🎄🎁🎁🎁
I read that you have a DSNS spreadsheet. My Gp doesn’t seem to understand the basics of PMR. For instance she suggested I reduce to4mg from 5mg and if the pain returns she’ll give me Amitriptoline. If only it were so simple! I wondered if you could send me a copy of the spreadsheet to show her? Should I give you my email address? I would be grateful
There should be two speech bubbles at the top of you page, click on it. Type in DorsetLady and you should be able to send your email address in the message.
I agree with DorsetLady. This sounds like a flare to me. I would definitely try a higher dose (plus 5mgs)for a few days to see if it gives you relief. If so, you can probably go down to the last dose you were comfortable at.
I have yet again tried to get below 10mgs.- got to 9.5 and have not been feeling well at all , so have gone up to 11mgs and feeling much better now. I have always flared at Xmas, so am trying to avoid it this year.
I really sympathise with you- you have incompetent medics around you! The GP is just plain wrong- the PMR has not gone and you need whatever dose of Pred. that your PMR needs. Full Stop. What is wrong with your Rheumy???? They sound entirely unhelpful and I would sack them forthwith.
I agree. Listen to your body and up your dose to the last one that successfully controlled the pain. I still get the hip pain that goes with being older that I had before I got PMR as I’m down to 3mg and started when I got below 10mg but thats ‘normal’ for me. Above 10mg all pain seems to go at least for me! Dorset Lady knows what she’s talking about. Good luck and I hope you get to manage your GP and Rheumy who obviously don’t understand your body as well as you do. I hope you feel better soon.
As I said in the reply to the other thread - this sounds far more like a flare.
"Those are almost certainly signs you have reduced too far - and you have a pair of nincompoops for doctors!!! But it isn't their pain so they don't really care.You need what you need to manage the ongoing inflammation - and if you continue to taper you will end up back where you started. Lets be clear: pred withdrawal happens when you try to reduce the dose in too big a step and starts immediately before then improving over the next 2-3 weeks at most. A flare occurs more slowly and is a return of PMR, eventually in all its glory, and it increases over a period of 2-3 weeks or more..And at this level of pred you may also experience signs of lowering the pred dose because your adrenal function is lagging behind. But that tends to be fatigue rather than the rest of PMR."
The paper bag belongs over your rheumy's head...
And I will add too: at each reduction step you should feel no worse than you did at the beginning. And you need to spend a bit of time at each new dose at this sort of level to be sure it is still enough to manage the symptoms. Otherwise you have no idea where it started to go wrong,
I have almost the exact same symptoms after going back up to 7mg after getting down to 6. Aches that come and go on moving hips, shoulders, neck or wrists - mostly just in the early morning. Tinnitus, a faint high singing in my ears that comes and goes throughout the day. Also a continual feeling of disorientation that seems to be the result of the prednisalone more than the PMR. I'm planning on continuing the 7mg through Christmas and New Year.
Wow, I can't believe the nature of the beast of PMR. Thought I'd be off the Pred by January. No such luck. I may bump it up to 7mg til I see the Rheumy in January. Best of luck to you. Lets hope we feel better at 7mg and not have to go any higher.
This is exactly what I am going through after tapering off for 2-3 months I feel it returning. Went to 2mg then 3 to try to stabilize aches and joint pain. Will stay at 3 for a while as I want to keep my adrenal glands to keep working. Exercising in winter is tough to do.
It's so weird as I too, feel it returning. Nothing like onset, but certainly same symptoms, just lesser degree. My mind keeps saying 'get on that exercise bike/treadmill", but my body wants to do nothing. ugh. thanks for your response.
I had a multitude of different types of aches and pains cascading around my body at varying times during prednisone withdrawal. I stuck with our tapering plan with regular lab tests. Eventually the pains subsided and now it is just the occasional ache or twinge if I move my arms too enthusiastically past their limit of painless mobility. Prednisone withdrawal was no fun at all and seems to be another unfair burden to deal with. But, for me, sticking with the plan turned out best. I hope you manage to get through this challenging time.
I have PMR/GCA for 18 months. My tapering was tailored by my rheumatologist along with how I responded month by month so it isn't a specific overall 'plan' but one that fit best for me. I started at 60mg prednisone a day, and month by month reduced by 1mg, then half a mg. Also, Methotrexate was added to my meds as the prednisone reduced. So far so good, fingers crossed. I know there are excellent slow tapering plans available through this website and I think it's Dorset Lady who has that information. I also hear that some people don't do well on Methotrexate so prednisone tapering might be different for them. Dealing with these diseases does seem to be on an individualized basis and the key is getting the right tapering plan for you. Good luck.
Down 1mg about every four weeks. When I hit 7mg and then 6mg is when I started to feel bad. Rheumy suggested staying on 6mg for two weeks, then alternate 6mg/5mg every other day for a month. Then stay at 5mg. 5mg is whats doing me in.
Ah, that's what I was looking for. I'm ok with 'sucking it up' with the pain if it's withdrawal stuff, knowing it can or will eventually subside. Thank you.
Totally agree. Think I'm learning this PMR thing. Listen to doctor, follow advice as best as i can, and stand my ground when I know their steroid recommendation isn't right for me at the time.
Hello, I have not tried CBD oil, but have considered it. My intuition tells me it wouldn’t be a substitute for pred. but it may help with the difficult tapering process.
Im trying one 750 mg capsule daily to see if it helps. I am currently taking 3mg of prednisone daily but still suffer from shoulder muscle aches and forearm muscle pain at night in bed. Did not want to go back up on prednisone daily amount if possible.
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.
prednisone taper, what to expect 
trying to taper prednisone
Rapid Taper
