After sometime on 10 mgs.. I tried 2 days on 9.5 woke up in the the night with acute pain in right shoulder and inside arm! Took several doses of cocodomol!
so this morning took 11 mgs and pain gone! Hope that was right thing to do. Frightened of that pain.. quite new!
So tomorrow? Ok if I take 10 now for some days before I try 9.5 again??? Help?
Hmm, just doesn’t seem quite right to blame PMR from how you describe it. Are you sure you didn’t tweak something such as laying a while in one position and upsetting a nerve in the upper spine or neck. The severity, newness and suddenness also suggests something different to PMR. If you had “several doses of cocodamol” was that a large dose over night? How long did it take for the pain to subside? Has it fully gone now?
I took 2 lots of 2 cocodomol. Worked quite quickly.. then came back. Now no pain.. haven’t taken any more. cocodomol. But did take 11 mgs as I said. Maybe you’re right? A nerve in neck or something like that. ? Feeling very dizzy and blearyeyed.. so what’s new?
So what do you advise from now?
Perhaps 10.5 tomorriw and back to 10 for a bit longer and see..
try again 9.5 in a few days.. for 2 weeks? . Rheumy thought I should do 1 mg a month but they would wouldn’t they?
I started on 15mg last December for 3 weeks, 12.5 for 3 weeks, then 10mg for 6 weeks. Now tapering 1mg a month, currently on 6. It always hurts for a day or 2 when dose reduces. Hang in there. I also work with medication . I have lost 42 pounds since March. I exercise every day and resistance train in water 5 days a week. The cause has to be treated as well as the condition.
Are you using one of the slowed tapers? Or just going straight from one dose to another?
I was about to decrease 0.5 every 2 weeks. ! But having jumped from 9.5 to 11 overnight! On impulse..! Not quite sure where to go from here. !!!! Homeopath suggested decreasing .0.5 every month rather than every 2 weeks.(only just keen that it is very gradual. )
Lots of people find that going straight to every day the new dose is too much but can cope with challenging the body with the new dose for just one day and going back to the dose they were OK at and then increasing the days with new dose works better for them - various approaches are in the FAQs under Tapering. If it were me I'd try 1mg with a plan - still reduced you the same amount by the end of the month (or so) and if that doesn't work, go back to 1/2mg. But nothing wrong with 1/2mg a month. Not slow when it works!
In that case.. thanks.. tomorriw go back to 10… and after a week.. say try 9.5.. and after 2 weeks 9.0 and then 9.5 again., very complicated. Bit of brain fog today I’m afraid!!
Still having nights with burning knees and ankles!! GP just says. Arthritis.. take cocodomol before going to bed!!! I have ice wraps by my bed in a freezer bag! Oh the joys Of ageing!!!!
On my taper from 25mgs pted down to current 3mgs, over about 4 years, I stayed at 10mgs for about 3 months, then started slow taper again. Seemed to work for me, though obviously everyone is different.
Its such a hard task to taper Pred , ive tried lots of ways, thinking i could do it ! but always ended up feeling dreadful ! Thanks to this forum i have finally know there is no short cut ! The fatigue for me is the hard part it gets my every time . So i am not rushing it anymore, i have trouble with side affects . But now i know pacing slowly is the only way and that it takes as long as it takes ! Due to these fantastic people on here i no longer feel alone with this. I am doing DLS plan and so far its going well. Good luck .
I am not finding it hard. I started on 15mg last December and am now on 6, soon to be 5. I will be off it inside of a year. You have to work with it. It is always uncomfortable for a couple of days after reducing dose but goes away.
Perhaps it's because I've been on it a lot longer than you. I like your confidence , good luck I hope it works out for you .😊
"You have to work with it"...
That's easily said when you can, but that's not the case for everybody...
I got to 4mg without a problem and then flared and went back to 9mg and slowly going back down, I knew I had flared due to the pain, not discomfort but pain. Also remember we are all different and some take longer than others to get off prednisolone. I hope you can get off it as quickly as you hope. If you do you are in the minority of people who get off it within a year.
"I am not finding it hard"Then you are extremely lucky. Many people really do struggle and the median time to get to 5mg is 18 months - meaning half of patients take longer than that.
I'm afraid you can't assume you will necessarily be off pred in a year. Only about 1 in 5 patients manage that and they remain at a higher risk of relapse at some later point, You are not simply taking a course of pred and then reducing to zero - the pred has cured nothing, PMR is a chronic condition and it is a management strategy to allow a less painful journey. You are titrating the dose to find the lowest effective dose for YOU since everyone is different and there is no standard dose. If your PMR disease activity is relatively low and you respond particularly well to pred, you may find your "lowest effective dose" is only 2 or 3mg. or even less. In that case the early tapering will go well and you will get to 5mg without problems - but it doesn't mean you might not get stuck at 2mg and find that if you proceed to zero the symptoms return as the ongoing daily drip drip of inflammation builds up again.
The people who are most likely to get to zero in a year are those on tocilizumab as well - but even that isn't guaranteed. I do hope you do - but the odds are it will take longer.
After 're reading your posts on here, you seem to have been pushy in your views, I answered you in a genuine way. Your answer to me was some what curt, if we all had a Crystal ball we would know when we would be off pred !It just doesn't work that way for anyone .
I don't want to burst your optimistic bubble but do be cautious. I started at 15 mg, and six months later was approaching 7, had attained 3 mg by the end of the first year. It was a seamless taper, although after 10 mg I tapered very slowly, the lower the slower. It took me another year to get to 1.5 mg, but I didn't stay at that level. For several years my "lowest best dose" was usually 2mg. After five years I seriously started the project of tapering to zero. I took a whole year to taper in the slowest possible manner to zero from 2 mg. Within 6 weeks I was back on pred. I was okay for some months at about 2.5 mg (note, I was now higher than I had been for some time) then had a major flare. I was able to control the flare with a much lower dose than the original 15, but for me dosage like 7 or 8 was very high. Approximately 18 months later I am taking 3 mg. I feel more confident that PMR is lessening its grip on me, but I am still unable, so far, to taper back down even to my old lowest best dose of 2. So I started out full of optimism, but I also had not been told by my doctor that pred was not a cure. I thought I'd be done and dusted in 3 months! Would I have had the flare if I hadn't previously flirted with zero? Who knows?
I guarantee I will be off pred on November 5th, 11 months since I started it The key to pred working is to address the causative factors of PMR. The symptoms are usually exacerbated by inactivity and being overweight. I have addressed both of these as I was both. I have lost 42pounds since March and will keep going until I am the correct weight. I have exercised through the pain, sometimes dragging myself along with the help of the wall. I run in water with dumbbells. I will be on 5mg in a couple of weeks. I have not had any side effects either. It is normal to feel increased pain and fatigue after a reduction of the dose. It only lasts 1 or 2 days. In my experience it is worth pushing through this to get off this toxin as soon as possible. I know everyone is different and some may be limited by the restraints of old age, not always though there are fit , elderly competent swimmers around. I am 59 so I am not young either. I feel that people should read positive stories and not just the doom and gloom of people saying they have been on pred for years and can,t get off it. X
Ok I’m 84! But what makes you think I am inactive and overweight?!? I have a lively cocker spaniel I walk everyday.. and do a yoga class. Am not back in a pool again but will be soon. I take great care of my diet. Mainly a lot of vegetables.. fish and no dairy!!! There you go!!!
I did not say that. Read what I wrote. I said that there are many fit elderly people.
Sorry! Ok.
Actually that is not quite what you said. What you did say was "there are fit , elderly competent swimmers around, which is not the same as saying that there are many fit and elderly people, they may be ok in the water but still have great difficulty in walking or vice-versa. I love swimming but my OA doesn't. Yes, there are many fit and elderly people and in real terms I would count as one of them, but that doesn't mean that if they have PMR that they will be able or sensibly want do the things you are suggesting.
No one here is selling the doom and gloom scenario but they are talking about their real life problems and hoping for some possible solutions and encouragement from the huge knowledge of experience available here. No one wants to be on Pred, or anything else, for longer than necessary but for many it is their only way of getting a quality of life that is worth living and being in a situation where pain and/or fatigue is under enough control for that to happen.
Getting off Pred is a really difficult proposition for many and in general terms there is no alternative. Try and come off it too soon or quickly and you can easily end back at the beginning of the journey again and end up taking more Pred than if you had tapered more slowly.
None of us can guarantee what is going to happen tomorrow let alone in 5 months time, yes, I plan my Pred dosage over a three/four month period, for prescription needs, which is shared and discussed with my doctors but we both understand that it is both liable/likely and does change over that period of time. It has changed now, and for a number of reasons I have decided to go back up to and stay at 5mg until, at least, the end of July.
I also have OA and have managed it and its pain for around 40 years, so fully understand pain, its consequences and its implications for mobility/debility and mental health.
I have neither been inactive or overweight so my symptoms have not been exacerbated or caused by either of these problems. For the first two months of my PMR (June 2020) it was pretty much impossible for me to walk (carried into hospital), I then built up my mobility carefully and slowly. I have always been totally opposed to the "no pain no gain" rubbish you hear about. I have been walking, most days with the dogs, around 6-7 miles a day for many months now, but I would never, unless it was an emergency, put myself in the situation of having/wanting to drag myself along a wall or anything else to get from A to B. I had a leg/knee/thigh problem a month or so ago and I had three weeks when it was excruciatingly painful to walk and I was physically unable to do, so I didn't, I rested the leg until it got better and now back to normal.
Pain exists for a reason, it is the body's way of telling us that something is wrong and please stop what you are doing. To ignore those signals is putting you at risk of causing further, possibly long lasting damage to muscles and/or joints and possibly other parts of the body.
73 years old, very few side effects from Pred, no special diet, not overweight now or at the beginning of this journey, and weight stable. As far as I and my doctors are concerned my PMR journey has been a positive and successful story and I don't think think that there is anything that I would change if starting it all over again. I might be off Pred by Christmas, probably unlikely, it is what it is and I'm not going to worry about it.
I count myself as being very lucky compared to many who have had, are having, a far harder and more stressful journey than me. We are all very different and PMR, whatever form it's in, affects us all in different ways - no one size fits all.
I hope you manage to get to your goal in November safely and that it all works out for you, but please do not be shocked if there are a few surprises left in your journey yet.
What rubbish. There are quite a few of us on here who were gym bunnies, fit, healthy and active and who developed PMR. Some were in their early 50s. Some of us contiued our sport - but I suggest you should discuss your view with cycli
PMR is not a homogenous disorder - there are various versions, just as there are different versions of MS. And maybe you will learn about it all the hard way. I hope not. But there are a lot of rheumies with your attitude - and they do none of us a service.
there is one thing you will learn Prinsted. You can guarantee NOTHING with PMR.
I can guarantee me!
You may be able to guarantee you will be off the Pred by the date you say, but that’s no guarantee that your PMR will be in remission at the same time - that’s all people are trying to say.Subtle difference…..
I think it will be but even if it is not I won,t take pred again. It is toxic. I would rather have pain than be on this poison .
I do agree about the toxiticy of pred!! Story! Had just started reducing.. 10 mgs to 9.5. Woke with excruciating pain in shoulder and arm. So took 11mgs pred.
No pain then.
But next morning woke in a complete panic about proposed weekend stay away. Shaking and sweating. Had to call a neighbour. Couldn’t understand as had been so looking forward to this weekend. Rang them to say I might not come!
Late afternoon I googled.. can steroids be a cause of a panic attack? Yes! But will pass.. and it did! Started getting things together and plan to go as arranged.
My sister who I’m sure has pmr.. won’t take pred as she’s seen the effects on me. She just takes painkillers! I’m taking both!
Courage to all! And pray that one day an option will be found! They say that no research has been done as pmr mainly hits the elderly?!?!?!
A great deal of research has and is being done. However - to develop a drug requires knowledge of the mechanism underlying the disease or one that manages symptoms which pred does. No-one really knows what causes any autoimmune disease so there is no cure.
There is a drug that would work for many with PMR, but the price makes it difficult to justify when for most people PMR lasts a few years before going into remission. It also has potential severe adverse effects. And I can assure you - some of those effects you describe with pred may be partly due to the PMR, I certainly experienced them in the 5 years I had PMR without either a diagnosis or pred. And on top of that I had constant pain and disability - which pred relieved and gave me my life back.
Well that’s your choice of course, and I wouldn’t deny it’s not a pleasant drug to take.
But it’s all a matter of perspective, depending on the level of pain people had prior to the illness being diagnosed, the severity of said illness, and of course whether it’s GCA or PMR.
Some of the people on this forum took a long time to get a diagnosis and were in considerable pain and a state of immobility, so for them Pred gave them their lives back.
In my instance (GCA only) my illness was diagnosed after 18 months of severe pain in shoulders & arms and increasing fatigue culminating in sight loss in right eye happening within a matter of days. Only high doses of Pred saved sight in remaining eye, but it took 2 weeks for that to be a certainty- and I can tell you 2 weeks of going to bed every night thinking am I going to be totally blind when I wake up in the morning is not a situation I would want anything to go through.
I not telling you this for sympathy, I don’t need it- I have been in remission for 5&half years now and have a good life, a very good life - but just to say for some of us, Pred is not the evil monster some others believe.
Nobody wants to be on it for a day longer than required, but sometimes it is necessary.
I do remember the joy of being able to lift my arms above my head! Magical! But at a lasting cost.. dizzy.. bleary eyed days.fatigue!! . hair falling out etcetcMust be an alternative eventually!!! We may never see it?!?!?
Must be an alternative?
Maybe , but whilst Pred is cheap as chips and does what it says on the tin what pharma company is going to invest millions on finding something else?
Yup!!!
trust me, you can't. we all wish you well on your journey Prinsted.
Will let you know when I am off it. Am certain I will be fine and not need poison again.
Hope you do successfully. Have you read my profile? I see DL above has explained about the pain. I'm not trying to spread doom and gloom. Everyone needs hope and good news. All anyone on here is trying to do is inform and empower each individual to be aware of the potential of this disease. Let me posit a comparison for you to consider. From what you have written about your daily routine I'm going to put your pain level at a tea mug full. When you get to a bucket level we'll talk some more. Then I will inform you what a 50 gallon oil drum full is like. By the way, you won't be doing 15000 steps or carrying on with anything else physical. You won't be able to get out of a foetal position on the sofa. You will be giving power of attorney to someone as you can't speak properly or even sign your name. You will wish your head could be detached for 18hrs whilst awake in order to relieve the pain. Pred. was the ONLY thing that gave me and many others here any hope of a life. It has wrecked along with this disease my physical self, but allows me to get by each day and have some part of a productive life. We all genuinely wish you a smooth and successful passage through this, but please tone down your gung-ho attitude.
I am so sorry you have suffered like this pre treatment I was in agony with my arms and lower back but I did carry on I remember the fatigue was awful and I could only walk for a few minutes before needing to rest. I really do wish you all a speedy recovery but I hate taking this poison and can,t wait to be off it.
I do so agree! Something says I ought to find a more positive attitude to it.. but I look at those little white tablets and want to put themIn the bin.
My homeopath has given me a cortisol remedy. Quite gentle and long term. We shall see!
Continued.. as I have posted before.. I Had no trouble in 2017 with reducing to nil in 6 months!!! So what’s different? 5 years older?!?!?
What precisely in this homeopathic remedy that counters cortisol Bedwell, and why would you want to remedy cortisol production? It's the cortisol you need to counter inflammation. It is that your normal adrenal function cannot produce sufficient to counter the inflammation, hence corticosteroids. which are stronger and replace your adrenal function. That's why people warn you of this reawakening period when you reduce to low levels. The adrenals need to start again. If you reduce too fast you are in possible danger if the adrenals haven't fully woken up again. I wish you luck with it but given the normal formulations containing the active components, however potent, are so infinitesimal that I cannot see how any such can be effective. I'd be very interested in your homeopaths medical qualifications on this issue.
His name is David Needleman. The cortisol remedy is to balance the side effects of the predisolone. Don’t know the details. Goodness you are very anti homeopathy! Have you had bad experiences? Or is it just an attitude?!?!?He is very very keen on the very slow taper ! Look him up if you like. !!
I'm not anti as an attitude. As a serious cyclist who has done some tough stuff I need to understand how my body works. I put nothing in that I don't understand and if I have to use something which could be harmful I need to know how it works. That summarises my issues with learning all I can so I can limit the damage. I believe in science and am a rational person. That you are talking about a cortisol remedy tells me that you either don't fully understand the process or that you are using the wrong terms. If it is for the side effects of prednisolone then what effects are you trying to counter?
Back again a year ago after triggered by 2nd Pfizer jab!!! Like so many people I know.. but I don’t expect you to believe that?!?!?
Why would you say that? It may have been the Pfizer jab, it may have been something else. The one thing we all know about this disease is that we don't know the real causes. I think I have a reasonable idea what may have finally tipped my body over the cliff but I don't KNOW. No one does. Not only do they not really know how we get it they still haven't done enough to understand the mechanisms of their treatments on our physiologies. Crushing a few essential compounds with water at 1000/1 dilution doesn't cut it for me.
Thankyou Prinsted. Of course you want to be off it. We all do. I was like you when I realised I would need to take it. I watched my father deteriorate way back in the early days of its use because they didn't understand its effects. Believe me I am well aware, but as you will discover this is not a disease to mess with and it does not respond to your wishes however determined you are. You need to totally control the inflammatory portion of the disease first. Then reduce when in control of that aspect. How you reduce can determine whether you flare or go steady. You should be relatively pain free during the process. Any rise in symptoms can indicate the inflammation is back and blood tests should give some indication, although not everyone shows this reaction. I suspect you are rushing it to get off the drug. That's a mistaken approach if you will forgive my bluntness. It is your body but please heed the advice freely offered here. Good luck.
I am listening to others. To be honest the disease and treatment frightens me. At the moment pred has taken away the pain I had, not osteoarthritis pain I have in my hip I am reducing 1mg every 4 weeks and so far no problems. I have made lifestyle changes and from my research resistance training and strengthening muscles helps. Of course, I wish everyone well.
Sorry for the osteoarthritis. My father was crippled with what they diagnosed as osteo. and rheumatoid arthritis from when I was 7 so 64 years ago. I suspect they didn't really know. He flew wellingtons, and was a superb athletic man before. I never knew that side of him, only his pain and deterioration of which he never complained. Don't be frightened. It isn't necessary, and others here will reassure you of that. When in its grip it is scary but take heart. There is light at the end of the tunnel and it is possible to rebuild after this.
Thank you. I keep going. I do a lot of training in the water. Today, Jubilee Day is a wonderful day and a reason to be glad to be alive. Enjoy the celebrations.
I'm not a good joiner inner. However, I respect the duty and constancy of our sovereign. Such an example to us all. Given the sorry crop of progressively depressing leaders we have suffered recently I am reassured to have a head of state with her qualities. This is something of which to be proud.
Well is working for me. I will be on 5mg after 6 months and off it entirely in 11. No side effects and large weight loss. I wish you all a speedy recovery. X
It may be so far. That doesn't mean it will continue like that. In the context of PMR as a whole, 5mg is still quite a large dose.
I'm glad it is working for you. Keep pushing but please tone down the slightly pushy rhetoric. Read my profile if you want to know what really happens to some of us super fit oldies. For some there is no escape. I have lived a longish life and pushed through everything in my path to great success. This disease stopped that in its tracks and turned my life on its head. Please fill in your profile with some detail of your journey and diagnosis path and keep us informed of your wonderful progress. I wish you all the best in your journey.
I think it will. I am very positive. Best thing for pmr is resistance training which I do 5 hours of every week. I also walk a minimum of 15000 steps every day along with a keto diet. I am never our of pain as I have osteoarthritis too. I am certain that by November 5th I will be off pred. I am reducing by 1mg every 4 weeks.
As PMR says you never know!!!!
Hi Prinsted. Have a gander at the muscle wastage thread. Some interesting and useful stuff there. Some of us carried on in pain for many years with PMR thinking the problems were associated with our sport. Probably 10 for me. We were never diagnosed and to be honest, it is really difficult to tie them to PMR or GCA because of their similarities to so many other possibilities. Maybe they caught you early and you will push through it despite the pain. However, please take heed and do recognise the steady drip of inflammation issue PMRpro highlights. Pred. will eliminate the pain in the right dose. This to some extent is a measure of controlling the inflammatory state. It is not a cure as there is none and if you continue to push through whilst the condition is active it will probably bite you hard. I hope not.
I've been dealing with a similar confusion. Very bad pain in left shoulder. Sometimes it feels like the arm is too heavy for the muscles which work it. Oddly enough last year it was the right shoulder (same type of pain, didn't feel like PMR). I tried everything, painkillers, physio, etc. Then in desperation took 10 mg pred (I'd been much lower). Miracle! Tapered (quite quickly), pain stayed away, mostly, unless I did something which aggravated shoulder again, and was able to avoid having to increase pred for the most part. Eventually cleared up. Now the other shoulder has entered the picture, but I'm pretty sure it really is not PMR, even though last year pred was a brilliant anti-inflammatory and worked better than anything else. Last year had raised CPR but I don't think I do now (due for tests sometime this month). Generally feel much better than I have for a very long time and I do feel better when pred dose is lower. Taking 3 mg at moment with occasional stabs at 2.5. The shoulder gets worse when I attempt to go lower, but I really do not have PMR symptoms elsewhere. I wish I could find the right rehab exercise, something like the "clamshell" which dealt with crippling hip bursitis. There must be something which will do the same for my shoulder. I think the pain probably originates in arthritic neck. 
Hi HeronNS. Sometimes pain and such like just happen. I've found that sometimes you move the joint into the pain and rotate tensing muscles slowly. It can move you through it and the pain is released. It's often a result of muscle contraction which needs to be released by dynamic but gentle stretching and tension. Sometimes it's just a pain.
My physiotherapist and I have pretty much determined that my shoulder/arm issues are being caused by compressed nerve. There's only just so much I can do about that, one of which is to try to maintain better posture! Problem is when I lie down at night it can get very bad, can wake me up or prevent me from getting to sleep, and I haven't yet figured out what needs to change in order to alleviate it. Other times it can be fine. Last year it was the other shoulder and was very much better when I took more pred, but I had other PMR symptoms then, including raised CPR, and these days I otherwise feel very well so extra pred is staying in the bottle! I expect problems tonight because I walked to the shopping mall and back, carrying a small amount of weight in a backpack on my return. I was walking or strolling around the mall for about 90 minutes in total.
I have similar issue in right shoulder. It responds to lying on opposite side, stretching arm back from shoulder into shoulder blade and then rotating. This stretches the muscles which can cause the joint to close up and tighten. It opens the chest also and assists good breathing. It might just release pressure on the nerve.
Thankyou. Till I see cranial osteopath next week!
Why thank me Bedwell? Not sure what this relates to. If you have read my profile you will see that I spent years with exercise, osteopath (about30 years twice a year) pills, stretching, acupuncture, massage and you name it trying to correct various ills, aches, pains, misaligned spine, neck issues and cranial manipulation . The issue was always muscle contraction which pulled the joints, and spine out of its proper alignment causing nerve pressure. No one could explain why my muscles were always so tight and locked but I religiously spent money on treatment and sessions to keep me going so I could keep active. I always saw the problems as relating to the intensity and activity that serious cycling had wrought . I managed to deal with this for 10 years or so and still kept training and competing. You will probably get by as you are if you don't exert the stress and tension I put my body through so not getting to the complete shutdown I experienced. All the alternative remedies and sessions in the world won't deal with the body locking down. Pred. was the only thing that released the muscle and when I started to learn what PMR and GCA had progressively been doing to my body, specifically the muscles a whole new chapter of learning and explanation clarified what had been happening and going wrong for so many years. I wish I didn't have to take this and I wish there were an alternative less harmful but I am not dead and still able to function albeit in a much more limited way than before. Nothing will dull my aspiration to getting some semblance of my old self but until I can safely reduce the pred. I am stuck with coping for now. Good luck with your journey.
Stiffness when tapering
weaning off Pred
Flare, increase dose?
What studies are available to show a link between untreated PMR and the development of GCA?
Flares and dose increases
