Just wanted to share with you this. I would love to be free of prednisone I really would but this is what I have experienced.
From 15mg I got to 6mg from last October and was due to reduce further. ‘Great’ I thought, but oh didn’t the pains return!
I tried and tried to bear the pain for 3 weeks slowly going down hill mentally and physically.
Thanks to all the advice on the posts here, and the advice of a doctor who was new to me, who understands Polymyalgia’s varied and ever changing pattern, I have gone back up to 8mg and what a relief!
I am not now thinking of the dose and getting down asap but of enjoying my life. So thank you all you great fellow sufferers on the Polymyalgia’s journey (and the Doctor), for offering your good and much appreciated advice.
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Dartmoor4
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Oh I will this time! Don’t know what I would have done without the support on this site because every doctor (besides the last one) kept urging me to reduce. This site is invaluable! I hope one day to be able to help others too.
How right you are. Unfortunately I’m on budesonide now for 3 months and off prednisone so it’s spoilt my tapering regime. Must say I’m quite pain free. Have taken 8 tablets of 9mg so far. Next month 6mg following month 3mg and stop. Not sure what will happen at the end of the 3 months! Have stock piled some pred just in case. We are off to Australia 5th dec so hope things don’t get too complicated. Massive adrenal crisis in Melbourne 😂
I get the same. And for some reason someone halved the amount of Pred I get on repeat. Had a flare and that is how I found out nearly ran out. Pharmacist says no one authorised a reduction so don’t know how it happened. The upped the amount to just enough. Good luck
Same here. I have been trying to slow taper from 7mg to 6 1/2, but I just can't do it. So 3 days ago I went back up to 7mg, and my word what a difference. I didn't realise just how much pain I was putting up with. I am due to go on holiday the first week of October, and have decided to stay as I am until after I return. I badly need this holiday, and being pain free, I can work on getting myself moving. Until now I have been counting the months to be pred free, but from now now I am going to concentrate on being pain free. Good luck to us all.
Quality of life is important. I stayed on 5mg for 3 to 4 months due to a variety of happenings at the time. Presently on 1.25mg after 4 years 4 months and remain longer on each dose as I go down. Only had a couple of minor glitches along the way. Stay on 7 and enjoy your holiday. 🌻
Can I ask where you suffer the most, I went down to 3mg but upped to 6 mg a month ago but thinking of increasing again, terrible pain in hands especially the right plus in and out of fatigue on a daily basis. I have suffered and been on Pred since 2017 Carl .
Hi Srixon, thank you for your post. I was exactly like you a few days ago. Wrist and hands especially the right were so painful. I upped from 6mg two days ago to 8mg and for me it worked. Pain virtually gone, of course it is there somewhat in the morning but once I take the prednisone it soon goes. I appreciate from all I have read that this is not a condition that will go quickly. I have learnt that it needs a lot of patience. I didn’t want to increase the dose at all and as I said in a previous post, and I stuck it out till in the end my mental and physical health was suffering so much. I know it is hard when a condition goes on and on and in a way we as patients are left to self medicate too! But it is not a race or goal to reduce asap. My body was flaring up again and my quality of life was going down hill. Upping the steroids for me wasn’t a ‘defeat’ but a Godsend as finding the correct level of prednisone turned my life around. I don’t know what tomorrow might bring but For now the pain is under control and I can live my life. Please God you will soon get some relief too. X
Thanks so much for your reply, I'm going to increase mine in next couple of days as its affecting my life in such a negative way, my doctor will be pissed as there is a real reluctance to prescribe pred and even more when you start talking about Increasing the dose. ATB Carl
Tell me about it! But it’s you in pain not them so be firm and insist you need the steroids to control your pain. We all want to be off the steroids but we also want to live our life too.
I wonder how common the hand pain is in PMR. I, too, began having pain in my fingers and wrists during a flare. Sometimes it would even hurt to hold the steering wheel of the car. Fingers feel swollen, stiff and tender. I instinctively felt it was related to my PMR because it would coincide with increase in other PMR symptoms. But, it seemed like my doctor only recognized shoulder and groin pain as PRM indicators.
I asked to go up on my prednisone dose from 3 mg to 4 mg to address the hand pain and other PMR symptoms - joint pain, sudden hair loss, scalp tenderness (though not in the temple/GCA area, thank God). Always feels like I am begging just to be given a higher dose during a flare Very demoralizing. Had ultrasound done of my hands this week to see if OA. They are backed up so will be 2 weeks before I get the results. Hands and other PMR symptoms better now that I am on 4mg. I have not read about others with hand issues here. Thanks for sharing. Helps to know I am not an anomaly.
Been on this journey since December 2017. I was told by one doctor that a good formula is to take just enough steroids so that you still know you have PMR, but the symptoms are tolerable. I think that is a good compromise with the good vs bad effects of prednisone.
p.s. leaving on vacation today so may not see your reply for 10 days, but am interested in the type of hand symptoms you had Dartmore4. Thanks again for sharing.
Pain in wrists more the right than left and both felt stiff. I couldn’t even open a jar or turn the tin opener! Hands and fingers were also affected. At night my shoulders were painful if I lay on one side or another. I put up with it thinking I had to but if it’s polymyalgia the RIGHT dose of prednisone helps enormously to control the pain. It hasn’t all gone but it is at least 90% relieved. I have just ordered the FLEXISEQ PMRpro suggested and will post how that helps. I had to get it on line as local chemists don’t stock it. Have a good holiday and watch this space!
Is the hand pain the PMR? Could it be osteoarthritis? Does it improve with ordinary painkillers? OA probably would.
The fatigue is probably the adrenal glands being a bit slow about catching up with the reduction in pred - that can start anywhere under about 10mg though 7mg is more common. While you are above 7mg pred, the body knows there is enough steroid for day to day function (it is essential to many processes and is provided normally in the form of cortisol). As the daily dose falls, the body must start to top it up but that doesn't happen overnight and the only way to improve it is to remain at that slightly too low dose and manage the fatigue. I don't advise upping any further - it is a stage that must be endured to get off pred. That's why we say small steps and big gaps between drops, it makes it less uncomfortable.
Were you any worse at 3mg than you are now at 6mg?
I'm diabetic so I am limited with pain killers, take paracetamol occasionally which does take the edge of it slightly. Difference between 3 v 6mg again improvement; I was suffering with my feet dare i say they are much better but my hands especially my right are really painfully, simple things like washing hands, holding cup of tea, lifting a kettle make me whince, they do improve from about midday best time late afternoon/evening.
Have you ever tried Flexiseq on your hands? A lot of patients were using it for OA in their knees and realised their hands were loads better too: you apply it and wait for 10 minutes before getting on with things - so their hands were getting the benefit before they washed them.
Someone recommended it to me on gear 10 days ago so I purchased some last week. Initially I felt it did help but a week later any improvement is very minimal.
Fair enough - I don't know if it is a slow accumulative effect. But that does suggest that the pain probably isn't OA and it might be worth asking the doctors for a bit more investigation in case it isn't PMR either.
Hi. When this started for me my hands were a nightmare. I would be up all night...it felt like a knife was going through each finger and my palm. It was a nightmare. I am on pain meds 3 diff ones...for my other stuff. I did have new strange pain in my back and hips, my neck felt tired so to speak, and my right shoulder and arm a mess. I thought it was RA. I was exhausted and just sick (I call it gamosis...which is nothing but an unidentifiable sickness). When I saw my rheum. she said PMR. Lord....here I am. My hands resolved immediately...what I am left with is back pain that starts fast so it's not like I am up.doing something and my back gets sore.....my arm still is bad but a bit better. So I am using the back pain as my guide. It's the loudest so to speak. But I am bumbling around on the pred...been on 16 for almost two weeks...had one day where things felt better but my back just slammed me. Might go up 1 mg just to see. This site and you all have saved me....my doc is all about reduce reduce. But I have learned that is not the case. The comments in this thread are a great message on that.
So hands can play a role the pain I have now is my usual which is OA. I found the pain to be very different that OA...
Yes it’s quite a journey for us and not easy as many doctors don’t empathise and I am sure that one doc thought I was not in all that much pain and told me he wanted me off the steroids (15mg) in 3 weeks! I then found this site and the rest is history …. We Must remember that we ARE progressing even if we need to increase the dose because we are understanding our bodies and learning to recognise it’s needs. You are doing well because you are addressing the pains and dealing with them. 👍👍👍
My low back pain is sacroliitis and due to myofascial pain syndrome tightenin the muscles and tightening the joints. It is the first sign of a major flare for me - I've ended up in the ED twice, unable to move! Targeted treatment is far better than more oral pred.
I wanted to ask if your back issue was there before PMR? I.have never had back issues before...almost the only part of my body not diseased...lol. but PMR's typical symptoms of "girdle pain" and shoulder/arm/neck pain. My hands and ankles still swell up but the awful debilitating hand pain has been gone since 20 mg. But these other things are still a problem....and part of what I look at to see if I'm better. Is that the way to go? In the past 2 weeks I have had one day where things were not too bad. I have been all over the place on dosing...20...15....10 (reduction plan by rheum)...then I went back to 20...15...12.5. Put myself on 16. So.do I try 17 or....is the goal no.back pain? It comes on too fast and hurts like hell. So while I am learning from you all..I am trying to put understanding into practice. So specific PMR pain and fatigue and spaciness are my guides....but I feel unsure. Any more advice? Anyone else have this experience with back pain? Ok...thank you. May we all have good days.
Yes - I have a scoliosis and a bit of history of whiplash which tends to create MPS problems or at least make them worse - it can exist in its own right but is more common in people with PMR and one top expert in Aus postulates it is the underlying pathology of PMR. They are both caused by the same inflammatory substances but in PMR they are systemic, in MPS they are localised in knots of hardened inflamed muscle fibres that can be felt in the muscle and in the muscle fascai, the transparent skin surrounding large muscles.
Whilst higher doses of oral pred do help, they are not the best way to deal with it. Manual mobilisation of the trigger points and steroid injections are useful if you can find someone who does them. I found Bowen therapy and Pilates helped a lot.
Thanks for replying. I am sorry you have to deal with it. I just took my dog to the front.porch and within 1 minute my back was kicking out spasms. And before that I was fine. So even tho this is PMR I should not use it as a pred dosing marker (my language). I just moved here from DC to Delaware near coast.....not sure what's around here treatment wise...what specialist do you see? Chiro? You know I got that why can't this be easier feeling again. But the last year has been intense and PMR.is not for sissies. Ok thank you.
That sounds like myofascial pain syndrome - in the form of greater trochanteric pain syndrome and muscle spasms. PMR might be making it worse but it isn't directly PMR.
My rheumy does something called neural therapy which helps me
Here the German-trained doctors use saline, lidocaine or steroids in the injections and they are always subcutaneous, just under the surface of the skin. The injection itself can be quite painful as it burns briefly but I know no-one who refuses them on those grounds - the effect is too good!
No, I meant to say that if one has reduced the dose and the pains return and you put up with it say for 4 weeks, as I did as I was told that my body would get used to the lower dose and the pains would lessen; they didn’t they just got worse. Does the prednisone have to work harder to get on top of the flare up or does it bring it down quickly?
Well there is more inflammation for it to clear out before everything stops hurting. So that takes longer, And if you let a flare set in it is often harder to get under control - no idea why and in some ways there is no logic unless pred does more to the disease mechanism than they say (I think it does).
If pain starts immediately and eases over the following week or so, then that was your body protesting about the change in dose - and if that iswhat happens then yes, your body WILL get used to the lower dose. However, if the pain appears after a few days (or weeks) that ismuch more likely to be that the dose is now to low and the left over inflammation has built up to a level where it can be felt. And your body WON'T get used to that, it will just get worse,
It really is important to get to know YOUR PMR and YOUR body so you can distinguish between the two and avoid flares.
For me, I came down relatively quickly from 50mg last September to 2.5 as of two weeks ago. I was good on every reduction until 3, confident I was making better progress than some. On 4 I was bubbling with only the odd bit of "neck ache" after waking up. But I continued to reduce. I got down to 3 and felt reasonable, pain free but suffered crushing bouts of afternoon fatigue. But no pain meant that I could keep pushing down. Now I'm at 2.5 I still have no pain but the fatigue is worse and drowning my life. I'm 75yo and not given to sitting around but 2.5 is no life for me. I gonna do my bloods early tommorow to give my doctor something to look at but after the blood test I'm going back up to 3. This is no life at all, staring at the wall, staring at the lawn and sleeping 16 hours a day in shifts. I've read the comments and I believe them - "quality of life is preferable rather than getting down to zero and wasting a life". THREE FOR ME and FIVE IF I HAVE TO!!👍😂
Totally agree with you Brunswick V8! We are in our 70s and have a variety of aches and pains (not all polymyalgia) and by adjusting the steroids we can enjoy living! We all need each other to help and support us. Let’s face it there is little help for Polymyalgia sufferers. It is a difficult disease to understand as it twists and turns and comes up with new pains sending us into confusion. BUT there are all the lovely people on this site waiting to offer comfort and support. Do keep in touch and let us know how you get on. 🌸🌸
You are NEVER reducing relentlessly to zero (unless you are told you must get off for a specific reason, which needs to be justified) - you are titrating the dose to find the right dose for you, the lowest effective dose, the lowest dose that gives the same level of relief from PMR/GCA symptoms the starting dose did. And you have arrived - you will get lower, just not yet. Give it a few months and try another 1/2mg, but don't ever force the drop.
It is because of your and other peoples good advice that I have reached acceptance of me and my polymyalgia. It has taken me nearly a year to get to this point. Acceptance brings peace and empowerment to control the pain to live as pain free as I can. Without this site I would be be in a very different place. Thank you for all the wonderful support.
I am in exactly the same position as you. I have been trying to reduce from 7 to 6.5mg but struggling as the pain has come back. ( Boy does that remind you that you have PMR) having been pain freeish for about 9 months. Spoke to GP yesterday ( as DEXA has shown I have slight osteoporosis 😞 despite me thinking I would be fine as I do everything that is recommended, hey ho!) but in the process I was asking her about my issues with the steroid reduction, especially, like you as I am going on holiday at the end of September/ October and I wanted to be OK for jumping on and off boats!! So I am also going back up to 7mg and staying on that until I come back at least. I now need to contend with taking Alendronate and Ca plus Vit D as well as steroids. As some one who has never had to take any meds in her life so far, I am not very happy, but I suppose needs must.
You are never reducing relentlessly to zero - youa re tapering to find YOUR dose, the lowest effective dose, the lowest dose that gives the same relief for PMR symptoms as the starting dose did. You have arrived for now - it is 7mg. Stick there for a few months and then try again. But don't try to force it. You will get lower - but only when the underlying cause of the PMR is ready.
Absolutely 🤣 I am definitely getting the message now, and actually the GP I spoke to this time was great and was definitely not pushing me to reduce ( unlike some others). I think as others in this group have said previously, some GPs make you feel like a failure if you are struggling to reduce, but it is definitely my pain, my life and I need to find the dose that works for me currently, and 7mg appears to be it for now!!
My new GP is great in this regard and he said "at least you are trying". If at 11.5 the pain comes back, then go back up to 12 and just keep trying. That meant a lot to me as this Rheumatologist I've seen only once (and probably not again), is reduce, reduce, reduce. I have a bit of pain at 12 in upper arms and thoracic region, but that is manageable. Neck pain in the mornings. If it gets worse, I may increase .5, but not yet. Very appreciative of this sight, as without it I'd be in the dark. Thank you all.
I too have turned that corner. I battled down to 7mg after a very long time of trying. I was there stabilised for two weeks and unfortunately caught a respiratory infection followed by covid! I am still suffering back pain after coughing for so long. I am on 8mg now and thankful that I can walk for 15 minutes each day to exercise. I just want to be mobile and relatively comfortable now! Wishing you well x
I am sorry to hear you are still suffering the after effects of covid. It’s a beast! I think that my problem was that the rheumatologist that diagnosed me with Polymyalgia made light of it saying that I needed to be on steroids but in 14 months I would be well again. Adding that I would decrease the dose every 3 weeks. Trouble is I believed him and battled to keep to his plan. Thankfully I have had an awakening through this site, and have accepted that this is a rocky journey one which I have to be in tune with my body and it’s needs and NOT with a regime. This has brought me peace. It is enough to try to cope with being an ‘Autumn’ lady and all the aches and pains that alone brings let alone that cheeky Polymyalgia which almost daily makes its presence felt! Thanks for your support. Thinking of you Elispethn x
I guess we all can’t wait to get off steroids once they’ve been first prescribed, but over time you [me] slowly accept that it’s definitely not an overnight thing and you literally have to go with the flow.
Anything that improves your life quality is key and if that means taking steroids for however long it takes then that’s the main thing.
So carry on your good work, Dartmoor4, and have a fab, relaxing holiday.
It's a trade off, but I think quality of life takes priority here. I honestly can't share my Rheumatologists deranged enthusiasm for getting me off Prednisolone and on to Hydrocortisone instead. When I mentioned it to a Pharmacist during a recent hospital admission they were equally perplexed, clearly something divine has entered my Rheumatologist's calculations. One thing I have learnt from this site is that people find their level with Prednisolone, and yes it has it's drawbacks but what point is there in a life of misery?
WHY is he so keen? It is still a steroid, it has different adverse effects maybe, sometimes less easy to live with, but the main downside is it requires 3x daily dosing to even half-decently manage PMR and that NEVER encourages compliance on the part of the patient. He's crackers!
I have no idea, he is quite Laconic when it comes to explanations. I do have a complex presentation, it is more GCA with me than PMR although I suspect it's lurking as I have had pain in my left shoulder blade for years and it can't tolerate any consistent pressure. I also have Osteoradionecrosis in the right jaw due to treatment for throat cancer. I have no idea if that has anything to do with the rationale, I mean I'm just the patient what right have I to understand?
Hi, I did the same for two years. Repeatedly had trouble on 7 mg. Doctor said to go up to 10 max. So I conservatively went up to 8. Then, he ran a CRP blood test and that had gone up a fair bit. Back on 10mg and comfortable, but just! I asked the family about Mother, who had a hard time with getting off Pred years ago when we lived on different continents. Sister said she was on it for 10 years! I’m on number 3. A ways to go. There’s not a lot to be said. Just Carry On!
Getting caught up in the ‘numbers game’ can lead to less than desirable results. I try hard not to forecast where I’ll be in the future, and focus instead on managing my PMR in the present (and living as pain free as possible).
So thrilled you’ve come to the conclusion that living life, while on enough pred, is preferable to a possible return of symptoms/flare. Your doctor sounds like a keeper!
Thank you for that! I have been struggling with the horrible PMR since November 2019, and all of the instructions from GPs were not helping, then I followed the very slow taper which seemed to help to reduce my dose of Pred as the side effects were horrendous; massive weight gain, moon face,hump back, wheezing, sweating,I could go on………..
Anyways, with the lovely helpful advice from very knowledgeable people on this site, I got through it, or so I thought; completely off Pred by March this year, and then just” old age pains” which are ok to live with. These pains started to get worse over the weeks but I thought” don’t make a fuss; everyone gets aches and pains as they get older”. I was still waiting for my second shoulder replacement so it could be related to that. Then one morning last week, I couldn’t physically get out of bed!!! I saw a locus GP following the mandatory phone call first, he took bloods and within the hour, I was phoned to say I need to take 20 mags Pred for at least the next month,then to review! Within 2 days I was virtually pain free!
I’ve now been taking this dose for just over one week and now the side effects are coming back; wheezy, sweating,etc.
I know I’ve rambled on here,but I needed to offload, and if it helps anyone else, then I’m glad.
I’ve booked a private consultation with a Rheumatologist next month with the hope that he may help me so wish me luck!
Cut your carbs - drastically. That helps the weight gain a lot but also helps other things as well for many people.
I would doubt you need the 20mg for a month - and I would have tried with 10mg first. Five months is a very common relapse time after stopping pred - and it happens because the underlying autoimmune cause of the inflammation was at a very low level and it takes a certain level of inflammation to be present before you notice it. No pred at all meant it built up slowly over the following months, like a dripping tap eventually fills a bucket and it overflows.
Don't despair - you probably need far far less than you are taking this week and you could well get to well under 10mg quickly which won't jeopardise your shoulder op. 20mg may well.
I have been exactly the same ,I have reduced to 6 mg and then 5 mg but like you after a week or so felt I was back to square one! Back on 6mg and coping again
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Very demoralizing. Had ultrasound done of my hands this week to see if OA. They are backed up so will be 2 weeks before I get the results. Hands and other PMR symptoms better now that I am on 4mg. I have not read about others with hand issues here. Thanks for sharing. Helps to know I am not an anomaly. 
The lesser of two evils, Prednisone vs Naproxen? 
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