Hi it's great to hear all of your posts and comments on this site.
I was diagnosed with PMR 15 months ago and have managed to reduce pred to 11mg. Over the last week I have had increasing pain, is this a flare? I have not been reducing or anything that I can think of that may have triggered it. I have increased dose to 13mg over the last couple of days but still the pain is worst today. Any suggestions how much I should increase dose to be pain free.
Diana,flares can be quite common in the first 12-18 months of treatment and if the pain has been increasing for a week or so it does point to a flare. Are you someone who had raised markers of inflammation at diagnosis? If so, then repeating the blood tests may provide the answer. As the pain has worsened today in spite of increasing by 2mg a couple of days ago, then it sounds as though you may need to go a little higher to get the inflammation under control, at the same time having plenty of rest to give the increased dose every chance of being successful and to give your body chance to adapt. However, it sounds as though you are expecting to be pain-free - unfortunately few of us are lucky enough to be completely pain-free down through the doses. But if you have managed to reduce successfully from 15 down to 11mg in the past then it sounds as though you might be one of the lucky ones. However, you may need to return to 15mg to get control at this point and I do hope that will resolve your pain.
Hi Celtic thanks for your reply. I did have raised markers at diagnosis, but I have been one of the lucky ones. Since the beginning I have carried on almost as normal and working full time in a job that involves a lot of walking and some heavy lifting. I have phoned in sick today and will increase dose to 15 and try to rest over the weekend.
Thanks for your help.
Diana, I did send a reply to your latest post but it seems to have gone AWOL. It said much the same as DL, that you may have provided your own answer to your present problem now that you have mentioned working in a job that requires heavy lifting. Your muscles will be intolerant of such exercise and are bound to rebel.
I do hope the next few days of rest and the increased dose will provide some relief for you, but is there any way that you can be relieved of the heavy lifting aspect of your job for a while which would make life much easier for you as far as being able to reduce more successfully at the lower doses in the future?
We are always in awe of people who have to work, especially in the early days of PMR and/or GCA, but it can often come at a price as far as timely and successful reductions of steroids are concerned.
Hi Dianabee,
I think your response to Celtic may show why you are having problems.
You say "you have carried on as normal......". Well, unfortunately you can't.... You don't have to stop doing everything, but you must moderate your lifestyle a bit. The Pred do their job, but you have to do yours as well. The Pred doesn't cure PMR, it just controls the inflammation, so you must make sure you don't overdo things and create stress, whether mental or physical (heavy lifting!!!).
Most people with a full time job find it very difficult with PMR, so you sound as if you are lucky in that you don't have many problems, BUT, you do have a chronic illness, and you must remember that. Just because you feel okay, it doesn't mean your illness has gone away, it's still there, waiting for an opportunity to rear its ugly head again! It's up to you to ensure it doesn't, and that means taking life a little easier.
Thank you for your advice Dorsetlady, I have been very lucky except for a few aches and high temperatures this is the first real upset since starting pred 15 months ago.
Hi again Diana,
Don't know what dose you started at, but it sounds as if you've come down fairly steadily, so can understand why you are a bit surprised at your recent flare, assuming that's what it is.
What could have happened is that your previous levels of Pred were only just keeping things under control bearing in mind you work and therefore are under more stress than most on this site who do not hold down a full time job.
We shouldn't expect to be completely pain free, but maybe your aches and high temperatures were an indication that things were not as well controlled as you thought. So when you dropped to 11mg, it was the difference between the inflammation just being controlled, and it not. Hope that makes sense!
Hopefully if you go back up as suggested by others it will work, but I would suggest you stay at the new level for a while just to make sure before you think about reducing again.
I know we all what to be off the Pred as quickly as possible, but unfortunately it doesn't work like that - as we're always saying PMR and GCA have their own timescale and we cannot change that, only live with it.
Hope you soon feel better.
As DL says - you have reduced steadily which is quite reasonable until you get to the point you are looking for: the lowest dose of pred that will manage the dose of new inflammatory substances shed each morning. You aren't reducing relentlessly to zero ever until the PMR goes into remission.
In the same way as gbax mentions, I envisage PMR as a cycle - it wanes and you are able to reduce the dose, it waxes and as long as the dose you are on is adequate you don't notice but at some point you get to a stage on the way down where it isn't enough to cover the flare. Or you have something else going on and you get a flare due to that.
Hi Diana, I have had PMR for 10 years. At the best I have been down to 7.5mg of Prednisolone. On average I would say I am on 10mg for most of the time. I agree with Celtic, increase by 2mg and see what happens. Increasing by 2mg usually gets me pain free. One important point I would like to mention is to "treat the symptoms not the Pathology". In other words don't react to raised inflammation tests, CRP or ESR on their own. Many other factors can influence these blood test, that have nothing to do with PMR. I have worked in Biomedical and Life Sciences for 40 years and I was given this advice by my Consultant Rheumatologist. I have read many scientific journals on the subject and I can tell you the old theory that PMR burns itself out is quickly being discounted. You have it and it will increase and decrease on severity depending on your general health, etc. I inherited PMR from my mother, who suffered for over 20 years and at one time took 40mg for 4 years. Good luck with your PMR control. You know your own body better than any doctor. Stay pain free and enjoy life!
Thanks for your comments and advice. I have only had one blood test since being diagnosed 15months ago. My dr has never mentioned a rheumatoligst and only just recently on my request sent me for a dexa scan.
Hi again Diana.
The majority of PMR patients are treated by their GP and may not be referred to a consultant. When I have a flare, I increase in 2mg steps. When I find a comfortable level I stay at that dose for at least a month. I always try and get pain and stiffness relief with the minimum use of steroids. Remember, the higher you go, the longer the trip back.
Never reduce by more than 10% of the dose. Try a reduced dose every third day and see how you go. Stick at that for a month, then try the reduced dose every other day. There is absolutely no point suffering with pain and stiffness.
Not a bad idea to get a Dexa Scan. Presumably you take Calcium with Vitamin D? Hope you find this helpful.
Geoff
Have you any references for the discounting of the theory PMR burns out? I've thought that was not entirely true for a long time - but on my own reading (same background as you) , I haven't see any "expert" opinions.
This Post appeared 4 years ago and is the best advice for PMR suffers I have ever read. It is still current and worthy of a re-establish. Thanks to the original contributor.
Reducing your prednisolone
Sharonsspot 4 years ago
When the going gets tough the tough get going! Get help to reduce the pain... A lot of this, is taken from a lady who has helped hundreds of us with PMR. But it is not all from her, so this is not quoting her. It seems to me that many of you are under the impression that, having taken steroids for a while you can taper the dose down to a low enough level to stop taking them altogether. This is what happens if you have to take steroids for asthma or a severe chest infection and for some other short-lived ailments.
In the case of PMR the steroids ARE NOT CURING THE INFLAMMATION ACTIVITY. They are reducing the inflammation to a level where you can function as near normal as possible. The fatigue aspect of the PMR does not change markedly and that remains something that is individual to you and will vary. There is no cure for PMR at present. You have to take this into consideration and decide whether you want to be an invalid until the PMR goes into remission on its own account or whether you will take steroids to make a reasonably normal life possible.
Many doctors will still tell you that PMR will "burn itself out" in a couple of years. This is not true. Some patients may have it for more than a couple of years and then it goes into remission. They may not need medication at this time, but it can return after a periods of months or years. Other people may find that they can get down to a low dose of steroids (5mg per day or less) but cannot go below a certain dose without the pain and stiffness returning.
Anyone who has been started on steroids to control the symptoms should try to get the dose down to the lowest possible level and as quickly as possible. However, this does NOT mean 15mg a day this week, 10mg a day next week, and so on until you stop taking it after a couple of months. What is meant is that you take 15mg or 20 mg a day (this is the recommended starting dose and if it is PMR you should show a good response within a few days) continue for perhaps a month or maybe more until the pain and stiffness is at a minimum. Then you can try reducing the daily dose. ( some people can only take 1 mg or .5 mg reductions).
In the UK the prednisolone tablets come as 5 and 2.5mg enteric-coated pills which cause fewer stomach problems but cannot be cut and 1mg plain white tablets which can be cut. In Canada it comes in 5 mg which can be cut to 2.5 and 1 mg which can be cut to .5 mg. This makes it possible to make combinations of pills to go down .5mg or 2.5mg in a reduction. If you reduce from 15 to 12.5 this represents a 17% drop in dose which is quite big but also quite possible at this level for most people , but for some it cannot be cut down that fast or by that dose without causing alot of pain. So if you are reducing 1 mg every few months, that still is getting you to the goal.
Once you have reached 10 mg per day you should aim for the drop to be as small as possible for various reasons. After a while your body has "forgotten" how to respond to the need for steroids and if the blood level falls below what is needed for all the body processes that it is involved in it won't automatically make some of its own and you suffer from the symptoms of "steroid withdrawal". This isn't addiction - it is just your body takes quite some time to relearn what it has to do and you have to look after it in the meantime.
To go down from 10mg you really should never reduce by more than 1 mg or .5 mg and make the transition from 10mg to 9 mg slowly. So maybe take 10 mg on Monday and Tuesday, 9 mg on Wednesday and 10 mg on Thursday and Friday, 9 mg on Saturday and Sunday. This should be done for at least a week or longer. If you feel good at that, try alternating the doses as 10mg on Mon/9mg on Tues/10 mg on Wed/9 mg on Thurs/10mg on Friday and so on. If that's still good, drop to taking 9mg a couple days in a row, then 10 mg for a day.. or drop right down to 9 mg. every day. Stay at that for a month or more until you make sure that you are still comfortable. You may have a bit of discomfort for a week or so which is due to the steroid dose change, but it will improve and should disappear in that time.
If you find the pain comes back and gets steadily worse over the next few weeks that is much more likely to be because the PMR is not being suppressed by the new dose. In this case go back to the dose that did work - you might not need to go back to 10mg every day, maybe on alternate days. But alot of times people need to go to a higher dose then before to get it under control, so it is best to do this slowly the first time.
Every time you try reducing the dose ..if the PMR pain returns - that is the dose at which you need to stick for some time before trying again to reduce. This may be 15 mg, 12 mg or 10 mg. It may be that you find that you are OK at 7mg a day, but 1 mg lower, you have pain and stiffness and cannot function. The best thing to do at this level is to accept it at 7 - (for a while at least) as this doses side-effects are minimal for most people. It is similar to the level your body produces anyway to make it function properly.
Some people think that one cause of PMR may be that the body is not making enough cortisol, the natural steroid, so the dose we need is just replacing it - like diabetics need insulin because their body doesn't make enough and the fact that PMR often starts after a stressful event or you get more symptoms in periods where you are being stressed in some way, either mentally or physically, would fit with this theory.
There is no merit in reducing the steroid dose to a level where the PMR symptoms return at a high level. If you are going to do that you might as well say from the start well, I'll just live with the pain. Taking a low dose of steroid just to say it's lower and I'm nearly able to stop altogether is pointless. You will have achieved nothing in the end.
Some people do not lose bone density whilst taking steroids. Some people lose bone density even though they have never taken steroids. Once you are at about 7-10 mg a day the loss of bone density is minimal providing you give your body a chance: take calcium and vitamin D supplements so the raw materials are there. Calcium should be taken in at least 2 separate doses, not within 2 to 3 hours of your steroid dose (they interfere with one another) and preferably one at night and with other food. Even a healthy young person loses a very very small amount of bone density overnight and taking some calcium just before bed helps this! So, steroids for breakfast, calcium for lunch and supper. Inactivity is the worst cause of losing bone density - so if you think about it, not taking steroids may well mean you can't do anything but sit in a chair and read a book - someone has mentioned in another thread that that is about all she can do now that she is at a very low dose of steroids. That too will make her lose bone density. So, are you any better off? No steroids but you can't function? Bone density can be monitored, it used to be called a dexa scan. But not everyone with osteoporosis breaks a leg anyway.
Each patient who is diagnosed with PMR has a choice to make: take steroids and live without unbearable pain, or don't take steroids and be an invalid and in pain most of the time. But don't allow a doctor to force you to take too low a dose to achieve relief or fall into the trap of believing it is virtuous not to take the medication that allows you to have a life, just because you might get osteoporosis. Doctors don't understand the pain as they've never had to suffer it. A rheumatoid arthritis sufferer with twisted hands and feet gets sympathy from most people..., the ones where there is no joint deformation yet, tend not to get that sympathy. And we with PMR look well, you can't see stiffness, pain in a joint and fatigue - and that fatigue isn't just being tired after a lot of work, it's there before you even get out of bed! It's still real!
However here it is as I was told. Once you reach 5mg, you are now going into a higher percentage drop. Work out the math (good for your brain). It becomes a long slow process (possible 1/2 mg reductions). And sometimes this can take up to a year to get down. If a ‘flare’ occurs go back up to the one previous, (ie) if on 4mg, go up 1mg,... if that does not work, go back up in one mg until you are comfortable and then try again. But be guided by your own GP or Consultant Rheumatologist as they know your own circumstances as everybody is different and may have other medical problems to control.
Remember PMR and/or GCA go when they want to and not when you want them too. Both have a mind of their own. Steroids do not cure, they give you a better quality of life. Even though they come with their side effects. Remember those side effects can be alleviated to some degree and the good news is that not everybody gets the side effects and I have not come across anyone who has had them all.
As I said in the first of the article...this advice is from several people. They are not Doctors and should not be relied on instead of your Doctor. Your Doctor knows your health and is the one person to work with to help with this disease. This is just good information for us to know and possibley follow with your Doctor.
To be honest, the best experts are those of us that have to live the PMR every day. The problem with PMR is that it is not very common. Therefore, very little serious research is being done. Having a Biomedical and Life Science background for 40 years, I have read many papers published in peer review medical journals. Most of the papers are anotdotal and not the result of controlled research. Personally, my own experience of living with PMR for 10 years, is that it does not "born out". Other sufferers may well have a different opinion, which I fully respect. I would be interested to hear other opinions. I recently posted a very good post first posted 4 years ago. Hope this helps. Geoff
That post summarises what I have written at least once a week every week on one or other of 3 forums for the last 7 years - it isn't from me, I wasn't a member of this one then, but it could have been.
PMR is the most common cause of rheumatic disability in the over 65s, GCA is the most common vasculitis in over 65s, it is classified as a rare disease, PMR isn't. And actually - there is a fair bit of research being done, particularly in Spain, Italy and the UK. But it would be lovely to persuade the docs that it doesn't go in 2 years - but I have been told by a self-styled expert that if it hasn't burnt out in 2 years it can't be PMR "by definition". Whose definition I have no idea!
But in a couple of weeks I shall be at the OMERACT 2016 conference in Whistler. It is not just PMR but PMR is one of the special areas where outcome measures are being established - a very good start to doing proper research. And 10% of the meeting delegates are patients, not sure how many of us as PMR but at least 2.
I know this is a very old post but somehow I stumbled across it looking for an answer to my question. I like your point 'the old theory that PMR burns itself out is quickly being discounted' but not sure the idea is dying out quickly enough. If you're still on the forum, how are you getting on?
Hi
I to work full time and have a stressful job
Started preds in Aug 15 15 a day reduced to 10 by doing .5 at a time flare in March took me back to 12 .
Just had a weeks A/L went away so had a very lazy week boy did I know it this week stiffness ,out of breath ,Fatigue the lot.
Speak to your employers mine are excellent I support people in their own homes and they allow me extra time for travelling as I don't drive used to walk everywhere but can no longer do that so have to bus.
I make sure I do nothing at home in the evening and make life as easy as possible get plenty of rest when I can and early nights.
I am trying the dead slow method of reducing now .
I would love to stop work but cant afford to due to the increase of retirement age will need to work for another 3 years .
I deal with benefits in my job and know that even if I did go down that route I would be placed in the ESA group . Then due to the system would have to undergo a medical which I would fail so would the be placed in the work related group .
So may as well stay as I am as I am it would cause me more stress looking for work and writing letters as they now expect you to look for a job at least 30 hours a week .
Even trying to get PIP is impossible as they say symptoms are managed with medication.
I did initially have 4 months off sick which I think did a lot of good as I did really rest.
I do find I am worse the weekend as I try to do housework ect and bending and doing more makes me very tired ,at work I do a lot of sitting talking to people .
Best of luck
Rose
I have to say - a load more rheumies and GPs like yours gbax would be a boon! They have become so fixated on lab results in the last 40 years - when I first started in the field it was the extra "bit" but the patient and their symptoms was what mattered. Now? Ignore the symptoms and disability - especially if they don't fit with the lab results!
I've said the entire time I've been on the forums that I believe PMR cycles - it will be worse or less worse and the really lucky people will have long periods of remission but some of us will never get rid of it. And anyone who tells me that it is well managed with pred so you can live normally might find their ear bent a bit hard. As a patient research partner I'm rather looking forward to being incarcerated with a couple of hundred rheumies in a few weeks time...
I wouldn't just assume it is a flare for no reason - I've just had a flare and it was triggered by a urinary tract infection I didn't recognise. I won't go into the details but it was obvious really when I thought about it. But the flare isn't unflaring - so don't just add pred ad lib but discuss it with your GP. Just in case.
But - you also need to discuss your work with your employer and see if you can get some relief there.
Feeling better this evening after increasing by 2mg and resting today. Thanks
Glad you're feeling better. I skimmed through all these posts rather quickly, but I didn't see mention of the dead slow nearly stop reduction plan. If you're dropping by no matter how small a dose it can still be hard on the body. DSNS method alternates old dose with new dose in a specific (but adaptable) fashion which seems to trick the body into not noticing that its pred fix is lessening. Google healthunlocked dead slow nearly stop and you'll find it!
I do use the dsas method to reduce but I have been on 11mg since January tried to reduce a couple of times earlier this year but pain and stiffness returned. I have not even attempted to reduce again for about a month so I am wondering why I have a flare. Thanks for your reply
As PMRPro says it may indeed be because your chronic disease (PMR) is making it very difficult for you to carry on with your stressful job. I retired from a part time job a few months after I got ill with PMR (remaining undiagnosed for quite a long time afterwards) and I can't imagine how I would have been able to work full time.
That is a difficult question but after a dose of flu all my pain in thighs and shoulders etc returned.
So I decided to increase by 2mg a day and continued until pain went. I ended up going from 5mg to 15mg and that was enough for me.
I would recommend this as you don't want to take more than necessary. It is depressing I know as you then have the journey to reduce again but that's the way it is.
Should I increase Pred dose ?
Should I increase my Pred dose?
should I increase my Pred once again? 
By how much should I increase...
How much Pred to increase after flare up
