The person that said "Prednisone does not give you a ticket to ever having a normal life again, made me so sad. I don't understand at all. I was feeling on top of the world just two weeks ago, after tapering down from 15mg to 0 in about 1 years time and it ended with a celebration on August 3, 2022.
When I got down to 2mg, I ignored the mild pain in my shoulders. I continued to taper to 1mg and the pain was still mild. I went down to 0 after 2 weeks, around the end of July 2022. Today, is the first day, I cannot do daily chores as I am in brutal pain in my upper thighs shoulders, arms. I can hardly sit down in a chair, and then, I can hardly stand up. The pain is almost unbearable in the morning.
How hard I have worked to get off this evil drug! I had every side effect possible from it including half of my hair falling out. I noticed that most of the people on this site are self medicating and tapering without a doctors advise. I completely understand. If I called my doctor today and described the crippling pain he would advise me to go back up to 15mg. I don't want to have the side effects again. And, I don't want to have that conversation with him.
Is my body reacting to the steroid taper, or did the taper result in the Polymyalgia Rheumatica returning. I am not under stress. I live on my ranch in Southern California. Beautiful, Quiet.
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lisbonportugal
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Unfortunately there is no cure for PMR and pred is the only medication found to reliably treat the symptoms. I'm sorry you had such severe reaction to it. However it is also possible that what must have been a very rapid taper may also have had something to do with how you felt. I've been on pred since 2015 with a six-week flirtation with 0 pred in 2020 (sound familiar?). I tapered to 3 by the end of the first year, and another year to 1.5. However to be truthful most of the intervening years I've been at 2 or 2.5. I am currently at 2.5 after a severe flare last year which had me back to 10 for a couple of days. (That flare, btw was not connected with my pred experiment. I didn't let myself get too bad then , but about six months later the disease seemed to really get more active again and my CPR was higher than it had ever been before.) It was not easily dealt with but I did not need to go back to 15, that is for sure. I did have to stay around 7 or 8 for a bit but things seem okay at 2.5 now, many months later. Did you really still have reactions to pred when you were at such a low dose?
If you decide you really must go back on pred because your life is now back to where it was before treatment, you probably don't need to go all the way back to 15, and should not unless there is a real reason to do so. Do you remember what your dose was before you noticed the "mild" pain starting to creep back? You could consider going to a dose one or two mg above that. I wouldn't take less than 5, however. The recommendation many of us go by to deal with a flare is 5 mg more than our current dose for at least a few days to make sure things are under control again. You might consider 10 for a couple of days and once the pain is as well controlled as it was the first time you started pred, then you can drop down fairly quickly to that level just above your last good dose.
There will be others along who have had reactions to pred with ideas about how they dealt with them, but maybe not until Europe wakes up tomorrow. Although I note that there are sometimes insomniacs contributing at what is the wee small hours in their time zone, so you never know....
Take care, and do keep in touch, let us know what you decide to do.
Dear Heron, thank you so much for taking your time to write to me. I still feel so naive and uninformed about PMR. So many people are trying to help me with information and advise me on this site. It is so amazing and I no longer feel so alone in this struggle. My doctor has never told me anything at all about PMR...just that I had it. I came across this web site by accident, looking for research information. II did not know that 2m and 1mg (such small amounts) would even be significant in the taper to 0. It was so hard to get from 15mg down to 2mg thus, thought going down to completely off Prednisone would be easy. This morning I took 10mg. I will stay on it for a few days. Shall I go directly to 5mg after the pain is gone?
I wish you a beautiful day today, Saturday, and everyone who responded to my first post. Love, Sasha
I have always been very cautious about the dramatic step down which we are told we can take after settling a flare. I'd tend to do it maybe in two steps, with just a couple or three days at each step, but so much depends on how you feel, and that's just me. And 5 is well above where you've been so it should be okay. Better safe than sorry? Others may have different/better advice.
I found a different forum, later this one, when I'd been on pred for about two months. My doctor had never told me how long I should expect PMR to last. I didn't know pred wasn't a cure. She said to stay on my initial 15 mg for a month, then drop by 1 mg a week, stopping that if I felt pain return. I interpreted that to mean if all went well I'd be done and dusted in three months! However pain did creep up when I went to 9, doctor was away on vacation, so I went online in the middle of the night, found a forum and asked if it would be okay to increase my dose back to 10. This I did, also learning a whole lot of other useful tips, such as that pred wasn't a cure and usually lasted a couple of years (we still weren't really talking about longer). After three weeks at 10 I started tapering using the Dead Slow method mentioned elsewhere, and this is how I've managed tapering ever since. But maybe the most important thing was finding the community. No one ever seems to have heard of PMR, although it isn't really a rare disease. For the longest time people seemed to know what I meant, but I would have to gently correct them and explain it wasn't fibromyalgia, which seems to have got much more press for some reason. It was great to find a community of others in the same boat, and the excellent advice they had to offer, especially those like PMRpro and DorsetLady and a number of others who seem to have been here to offer support since the beginning.
I am afraid you have just hurried a bit too much. I am sure you realise that the PMR is still lurking there and causing you pain. You need to go back to the dose where you were happy with no niggling pain, hit the PMR on the head and then you can drop down again. At the lower levels of pred you should not really be getting side effects. Out of interest did you take Methotrexate?
Hi, I have never taken Methotrexate. No, I didn't know that PMR was still lurking. I read in the literature that PMR usually disappears in 2 years. I was at the 1 3/4 mark and I felt great. What is actually happening to my body? I don't understand how the pain can be so severe and cause my muscles to respond with such pain and weakness? Is this dangerous? I am faced with the decision to take more Prednisone or to tough it out. Will the body adjust? Is that the adrenal system that is doing this from the lack of enough Prednisone? Or is it the PMR?
The answer is don't tough it out, the PMR will win. You are nearly there so don't let it get out of hand. The average time to have PMR is 5.9 years. Some people go into remission in 2 years or even a bit less and some a lot longer. Once you get PMR it is always in the body. Try going to 5mg for a week or so and see if that hits the PMR on the head. You can then reduce back again. I asked about the Methotrexate as that is renowned for causing hair loss.
Hello, I took 10mg yesterday and 10 today to hit the PMR on the head! I am still in moderate pain in my shoulders and legs and very stiff. I am not able to get down to lay on my rug in order to exercise. I have to fall down from a sort of mini squat and fall over to get down. How long do will it take to get back to feeling normal again? What is the physical explanation for what has happened to my muscles?
Be careful with exercise - pred isn't a passport to go back to normal, it is to manage the inflammation, it cures nothing. There is an underlying autoimmune disorder that is attacking your body tissues, causing inflammation and that is what underlies the symptoms. It is a bot like having permenent flu that is directed at your body tissues.
Thank you for your words and support. I am independent and strong. If I rest too much, I will become weak. I am used to walking 2 miles day. Not sure why I should rest so much?
PMR is a chronic systemic autoimmune disease and one of the usual symptoms is fatigue…....you do need exercise, in moderation, but you also need to rest.
Because your muscles are compromised by the disease process. No-one is saying do nothing - but we ARE saying that pacing is essential and if you do too much you may develop DOMS, delayed onset muscle soreness, the response to exercise. However, it may be far more severe than you are used to and not resolve as quickly. If you do too much it can take weeks, sometimes months, to improve. It is caused by tiny tears in the muscles due to the exercise and them healing is the normal process of training. However - the healing process may be compromised due to the autoimmune part of PMR and also sometimes by pred. Your response to exercise is exaggereated in that sense - and rest is as important as the exercise to allow for healing.
And in the meantime, you can't always tell the difference between a PMR flare and the DOMS so may increase the pred dose unnecessarily. Which won't help DOMS. The answer is to start from scratch when it comes to "training" - you have a new normal. at a much lower level than before you became ill. Because whether you like it or not, you are ill
The answer is not simple. You could be reacting to pred. as I did. If it is pred. induced myopathy, muscle wastage, some get it more severely than others. It affects, strength, response, balance. You can get fluid retention as I also had and swollen feet, legs. The fast twitch muscle is the first to go and therefore your response to action and makes the less mobile. The next to reduce is slow twitch and correction is hampered. The fluid in legs makes mobility difficult. You are weaker due to less muscle. If you overdo things, you will suffer tiredness and possibly flare as you have overstressed your body's ability to perform in your new altered state.
Your description of the pain sounds like PMR. Adrenal sluggishness tends to result in fatigue symptoms, not pain. I can tell you from experience that I need around 2 mg pred or pain starts to re-emerge. With most people PMR goes into remission, seldom in as little as a year, more likely more than 2 years. I believe the median length of time active PMR is present is close to six years. But as my experience shows its activity can usually be controlled by a very low dose. Anything below 5 causes few serious side effects, and I remember when my doctor told me she was happy with me at 3 mg!
I should have added that when I first started pred my doctor told me that I would have a lot to say about how the taper would go, and she also said that many of her patients kept a supply of 1 mg tablets on hand for a long time in case they needed some pred, in other words, zero was not the target, but the lowest effective dose to control the symptoms. And in time nearly always the disease goes into remission and pred is no longer necessary.
You said you had aches at 2mg - that was a sign you were at the borderline of enough pred and not enough.
Some early studies suggested PMR lasts 2 years - it doesn't. One of the top PMR researchers in the UK, Prof Sarah Mackie said recently that it is imperative the 2 year PMR myth is dealt with - too many patients are suffering needlessly because there are doctors who believe in it.
I agree with you. Doctors need to know and tell patients the truth. When I was diagnosed in the hospital with GCA I was told by one rheumatologist after 6 months of Actemra I would be done.The rheumatologist I settled on was more realistic but not completely. He didn’t want me on Actemra because he didn’t trust the side effects. He started me on 60 mg prednisone and said probably for a year. That wasn’t true either. Maybe for some people but after being on this website it can last for years before they go into remission. I don’t know if it would have been better for me to know the reality but I definitely had false hope
The 6 months of Actemra one had obviously NOT read the documentation for the clinical trials! Half of patients weren't off pred at a year - a fact far too many don't appear to have registered!
When I first got involved with the forums it was blatantly obvious then that a lot of patients who found us had been told the 2 year story - were still on pred and being browbeaten by doctors as it being their fault for not trying hard enough and - god help us - WANTING to be on pred! They found us - and we told them the truth, that the 2 years bit is - as Prof Mackie in Leeds puts it - a myth, Patients become down at their "failure" and the doctors get stroppy. We asked the doctors why they told patients it would be gone in 2 years - and some admitted that they thought it was too upsetting to say that at the start. What is upsetting is the realisation that, no you aren't better. and were unlikely to be back to normal - and that you were lied to. Because that is what it is,
Spot on. I too was told 2 yrs. My friends tell me that our bodies are all different and react differently to drugs and diseases and I will probably fair okay. Yep, I knew that, equally though why should I be different than many others on this forum, and I'm proving just that. In Dec this year I'll have been taking Pred for 3 yrs. A few hiccups a long the way where I've had to increase a little. Worst time was in Mar 2020 when I got GCA too. Put on 40mg, even then I was told to reduce too fast, but I listened the this group and tapered a lot slower. Hoping my last little flare recently is now under control, but will still taper slowly to get back to 5mg where my problem started.
Dear Ambassador, my body is racked with pain after 3 weeks of the low dose taper to 0 mg. I thought I was done with PMR. I learned yesterday that I may never be rid of it despite my healthy life style and amazing diet all of my life. I do not know what causes PMR? Can you explain it to me?
It’s highly unlikely you will never be rid of PMR-most people go into remission - but not within a year…..as for what causes it , many things, stress, genetics, environment -and being super-fit and having an amazing diet is no guarantee you won’t get it .
You are never rid of the propensity to develop it - but I know lots of people who have had it, were able to taper off pred once the autoimmune part of the disorder had burnt out and gone into remission and have never relapsed. A few relapsed and got through it again - but have been off pred for 7 or 8 years since them
As DL says, there is a whole range of factors that can put stress on the immune system and eventaully it flips out in response to one too many and goes haywire, attacking the body as a foreign entity. But somewhere in there is a genetic factor that makes it more likely that these other factors will flick the switch, Research is ongoing on that. Being fit and healthy and eating a good diet is only one factor and doesn't guarantee anything,
“ I didn't know that PMR was still lurking. I read in the literature that PMR usually disappears in 2 years. I was at the 1 3/4 mark and I felt great. What is actually happening to my body? “
As stated by others, the literature may say 2years, and for some that is that case, but for an awful lot more, it isn’t!
In hindsight (yes I know!) when you had issues at 2mg, had you got them under control and not ignored them, then you probably wouldn’t be in current situation.
But it is what it is, and you may find that if you return to a dose of around 5mg now you may be able to get things back under control. If not then you may need slightly higher, say 7.5mg. However there longer you leave it, the worse it is likely to get……and you may well end up right at the beginning again…obviously not what you want.
As we all know Pred is not a nice drug, but if you look on it as a friend helping your illness rather than evil, and not trying to rush off it, you may have a better outcome all round. Hope so….
It is so disheartening, but as my Dr said matter of factly when I was pleading “why” when my inflammatory markers had leapt back up after just a 1 mg drop over two months. “The Polymyalgia is still there.” Hopefully, you can quickly get it under control again with this brilliant advice and look at a slower taper. Hope you feel better soon.
"This evil drug", as you put it, is the only thing that is keeping the inflammation caused by the disease under control, It is not evil. it is your passport to having a relatively normal life as long as the underlying autoimmune cause of the symptoms that are called PMR is active. And it was protecting you from the damage that inflammation can do to your body tissues when NOT managed. Which includes a build up of inflammation that amounts to GCA and the risk of loss of vision - unless you take large doses of pred, 40mg and above.
You were never reducing relentlessly to zero, you were looking for the lowest effective dose that managed the daily dose of new inflammatory substances shed every morning at about 4am. It has not "returned" - it never was gone and once you got those warning signs at 2mg you should have stopped reducing. Pred CURES nothing, it is a management strategy to allow a decent quality of life until the underlying disease burns out - but that almost never happens in a year, a third may be off pred in 2 years, many take more than 4 to 5 years. You may have needed 3mg, you have been reducing pretty fast so may have missed where you crossed the line between enough and not enough.
I would say you don't really need to go back to 15mg, You are likely to need under 5mg if you are sensible and don't let this get out of hand. I would suggest a week at 10mg and then drop to 5mg if the aches are gone. And work from there. 3mg may be where you need to be for a while if that is what allows you to have a fairly normal life. But you can't force a reduction if PMR is still active - the inflammation will build up again if you are too little pred and eventually overflow as it has done.
No, we are NOT mostly self-medicating - for one thing we have to be able to get the pred from the doctors so they do need to know what we are doing. What we ARE doing is managing the tapering to suit our PMR and our bodies. None of wants to be on pred, we ALL want to get to the lowest possible dose. But the lowest possible dose isn't zero for quite some time. It takes patience and a degree of knowing your PMR and your body and how best to manage things.
It isn't the end of the world - provided you don't get all stubborn and insist on no pred. Pred used properly and carefully as many of us do is not evil It is a powerful antiinflammatory drug than can be used to allow a better QOL and avoid worse illness. And it saves both sight and lives.
Forgot to say - hair loss is a common response of the body to serious systemic illness but often isn't noticed until several months later. Pred can cause hair loss although it is uncommon - but the hair loss is noticed some months after starting pred which coincides with the PMR having started. I shed hair all the time I had PMR without it being diagnosed - a full 5 years of PMR and no pred. It changed in quality and quantity although since it was very thick to start with there was plenty left. So it wasn't pred. It improved after starting pred - but has come in much curlier than it had been before.
Re hair loss, I had the same experience as PMRpro, a year or so of not understanding why my hair was thinning and lustreless, all the while experiencing leg and shoulder pain. I know now that what I put down to "aging" was PMR setting in. Pred has restored my hair to its previous thickness (with added curl!). I'm hoping this will last when I taper down to single figures 🤞
Should you restart the Pred, (which it sounds like you need to do) there are lots of resources on this site for managing Pred related side effects. Most of us that got down below 7-10mg are able to manage things to hardly notice any side effects. The hair, the fatigue are likely the disease process itself or the “adrenal waking phase” of tapering. Hair loss is actually a symptom for me that my GCA might be about to flare. You have found a great site to support “managing” your PMR. For that is the journey we are on. Nothing “cures” it but time. Let us know how you get on.
I am so happy to be here with everyone. I am feeling so supported and loved. I really needed you all. I don't know what I can give back to all of you. I hope I can help someone soon. I took 10mg today. I would not have done that if it weren't for all of you. It took me a long time though to put two 5mg in my mouth and swallow them!
Are you the PMR Ambassador? Thank you for everything you have said to me as blunt and straight forward so that I would listen! This above post is so helpful to me. I am wondering why the Rheumatologists did not take 10 minutes in the office to tell this to me? I would like to ask you if taking the 10mg today will halt that 'adrenal waking phase' that you referred to? Shall I stay on 10 for a few days or a week? I am pretty nervous about my adrenal system getting used to the Pred again.Should I go right down to 5?
If I taper from 10mg to 5mg in a weeks time...or shall I taper by 1/2mg each day?
I'm the one that rejoices in the label of Ambassador - just a label! PMRpro is my user name.
Going to a higher dose for just a few days up to a week to 10 days shouldn't affect the adrenal performance at all. That's the idea of doing that way, it shouldn't put you back in a taper.
I don't do fluff and am sometimes criticised for being blunt - but I think it is important to cut through the mists of prevarication we meet so much. To be honest, a lot of rheumies just don't know what is important to the patient and because they know (or think they know) they assume everyone else does. Plus they are scared of being asked too many questions as it slows them down - in the US that costs them money!!!!
Having read the replies, and I hope are helpful for you, I would add tapering at low dose needs to be slow. 1mg to 0 in one step is far too much. Some here cut the tablets enabling 0.75, 0.5, 0.25 and then 0 over a longish taper period.
When I tapered (ultimately unsuccessfully) to zero from 2 mg I took an entire year. I went in .5 mg steps and took three months for each taper. Obviously my body needed a little bit of pred even so, and perhaps I ignored warning signs as I crept closer to zero. The final taper was from .5 mg to zero, using the dead slow nearly stop method, where zero was my "new dose". Throughout that year I did each step of the DSNS twice over. So if PMR still lurks, even the slowest possible taper will not work. It took me six weeks to admit the pain I felt was not just pred withdrawal. And how much withdrawal would one have experienced from no longer having an occasional .5 mg dose anyway? lisbonportugal you can find the slow taper methods in our FAQ post.
Hi LP, have to say I've never seen Pred as a drug from hell. Having gone from someone who was pretty much carried into hospital because of pain and being unable to move, pretty much, any joint in my body those little white tablets gave me my life back. Within a couple of months I was back to walking the dogs and leading a relatively normal life. I was also directed to this site by the NHS and with a little research accepted that I had a long term systemic condition. Compared to many here I've been lucky and after two and a bit years, with a couple of ups and downs, I'm down to 4.5mg. If my present taper holds up I'll be off Pred in around forty five weeks, it may happen, it may not happen, either way its not a problem, it is what it is and I'm not going to worry about it. I also have an excellent set of GP's.
If you need to go back up for a while to the dose where you were 70/80% pain free, reasonable/good quality of life, stay there for a couple of weeks whilst things get sorted, then that is what you need to do, doing nothing won't beat PMR it just means you will have to go up higher and stay there longer.
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It was great to find a community of others in the same boat, and the excellent advice they had to offer, especially those like PMRpro and DorsetLady and a number of others who seem to have been here to offer support since the beginning. 
Question about Prednisone tapering - 5 weeks with hPMR
Should the pain return after the first taper?
Tapering down on Prednisone 
