Just diagnosed with PMR. Can I wait 2-3 months before taking Prednisone?

Wow!  Can't imagine putting up with the pain of PMR without Pred (apart from the debilitating fatigue!)

I started when I was 72 - typical start atypical progress.  I'm 76 now.  When I was 75 a young doctor told me I looked like a VERY young 70 year old, but I had the body of a 75 year old, I THINK he meant it as a compliment!

I am sure my mother had PMR (not known in those days).  She had pains in upper arms, shoulders and knees (does that ring a bell?). Of course there was no Pred then and she tried to deal with it with pain killers.  Can't have helped much!

You must know your own body, and if you are reluctant to start Pred, I understand, but don't envy you.

Let us know how you get on.

Kindest regards from Constance

I found the pain so disabling that I became easily deconditioned and depressed. Joints became tight, I didn't sleep well, and needed help from my husband for the simplest thing like dressing, getting in and out from the car etc. In the USA the protocol is to use the lowest dose of prednisone to control symptoms and keep the person functional while controlling prednisone side effects. The prednisone is dose slowly lowered to allow function while the adrenal glands recover.

Before my diagnosis I used naproxen( hard on the stomach) and Tylenol with some success. I did get steroid shots into my bursas which also help. I add that I got

I've been on prednisone since sept and like the other's can't imagine not being on prednisone. My Dr first put me on percocets for the pain and by noon hsd taken a max dosages for the day. I ended in the hospital in agony and they put me on prednisone and within the hour it was kicking in.

Best of luck with the pain, im 58

I had a very very gradual onset of PMR, and it is now agreed (by the medics) that it began in my early fifties.  It took a long time for me to find a doctor who listened to me and I wasn't diagnosed till I was 57.  By that time there was clearly something wrong with me!  Like so many others I needed help for just about everything in life and steroids seemed like a miracle to me.

I am now 71 and in the intervening time I have been diagnosed with several other autoimmune conditions and I believe that the late diagnosis of PMR could well be responsible for this - over the years before diagnosis I think the inflammation weakened my whole body defences.

It might seem to be a good idea to begin with all your systems working full speed, but in the time it will take to do this, how much will the inflammation have damaged your body?  It would seem to me to be more sensible to take the steroids, get stabilised, and then worry about other things. Quite apart from anything else I would have been left completely disabled had the diagnosis taken even longer. 

Pred gave me some 70% of relief from pain and the ability to carry out my normal-ish working life (I needed to make some concessions obviously) and kept me out of a wheelchair.  I am grateful to it.

I would add that I was a very busy and fit person before this began to take hold of me.  I would also add that like Eileen I don't carry any inflammation markers, which of course was the big step my then GP

couldn't take, she had seen PMR before, but not sero-negative.  Luckily the Rheumatologist had or I don't think I'd be sitting here today.

 

Perhaps your dose of pred for those 14 days was much higher than you will take for PMR, which usually starts at 15 mg and after a month or so you start to taper?  Many people can successfully get to 10 mg fairly quickly before having to slow down the taper, and that is not, in the big picture, a very high dose although it does still cause some side effects.  The problem with not taking pred, as I see it, is that you are not likely to get better without it.  I don't know where this idea comes from that it will "burn out" in a couple of years.  I certainly had PMR for at least 14 months before being diagnosed, and now in retrospect I believe I had minor flares of it at a much younger age.  I am now 68, but the first inkling that I had something like this going on was probably in my early 50s.  And, yes, I did recover those times, and had no idea that it was likely PMR.  The other issue is, ironically, to do with eyesight as PMR is closely related to a much more serious condition, GCA, which can, if left untreated lead to irreversible loss of vision in one or both eyes.  Personally I chose not to take that risk.  At the time of my diagnosis I had some idea that steroids were a bad thing to have to deal with.  I didn't know how difficult, really.  But even knowing what I do now, I would still make the same choice.  You might want to discuss with an ophthalmologist any concerns you have regarding the effect of prednisone on your eyes.  Good luck.  Please let us know what you decide and how you get on.

Hi Thomas. Sorry to hear you have PMR. I too am only 47 and was diagnosed in Sept. For me, I had the pain for over a year and was managing it pretty well. Pain in hips and thighs. Fastforward 1 year and within a 2 week period the pain also went into my right arm and shoulder so badly I couldn't even raise my arm. The severe fatigue hit at the same time and I could barely get out of bed.

I too would have loved to stay off the Pred for obvious reasons, however, the relief it gave me from the pain and fatigue is paramount. I am not pain free but am able to manage it and get on with my day to day activities. Had I been diagnosed a year ago and started on Pred then, would I have been able to avoid the 2 weeks of pain from hell this summer? Who knows, but I'm thankful for the Pred now.

It is scary to be 47 and dealing with this. I am hoping that I can get off the Pred at some point but willing to take it as I get my body mind and soul in a good place.

What were your blood markers and did your GP want you to start the Pred or when you see the Rhuemy in 6 months?

I hope the pain stays managable for you. Best of luck to you.

Kelly / California

In the UK a decent GP would initiate the pred - even if only to see if it helps. There are also GPs who won't take the step and a wait for a rheumatologist is as long in the UK. However - if a GP offered me pred to see what happened in the meantime, I'd take it! For completeness I'll copy and paste the post I wrote to you on the other thread at the end - I've had no notification of this one for some reason. But there is more:

To deal with the other questions - on that basis the 5 years I waited could be said to have made my journey longer and more complex - it has certainly been much harder believe me. I had some fairly rough months nearly 4 years ago, I never considered not taking pred, it could have been even worse. I certainly have some cardiovascular damage from the inflammation.

Is your GP convinced about the diagnosis? PMR is only a name for a constellation of symptoms that can be caused by a wide range of underlying causes - taking 15-20mg pred for a week or so (as described in the "Bristol paper" ) is a way of sorting out the sheep from the goats. If it doesn't have a speedy and noticeable effect - it may not do anything. LORA (Late Onset RA) can present exactly the same way - but tends not to respond so dramatically to this moderate dose of pred. The relief won't be 100% but the improvement should be about 70%. You are young - it COULD be something else.

You may be fit now - so was I when my PMR started and rarely took pain-killers for a headache or anything else, I put up with it. Is that a sign of a high pain threshold? If so - I feel qualified to say that as yet you have no idea what pain every day, all day, over months and years can do to you. PMR is associated with depressed mood anyway, add constant pain to it and you will definitely get depressed. I lost muscle tone and put on weight because I was so restricted in what I could do. I simply couldn't go out and join in with my friends, I became isolated - and I know others have said the same. I couldn't do things in the house - not being able to do the housework was no hardship but it doesn't keep the house clean and tidy. I couldn't hold things, I had no strength to do things - it took me the entire morning to change bedclothes, in stages. I couldn't garden, I couldn't walk far. It affected my relationship with my husband and the rest of the family - I couldn't bear to be touched because everything hurt. I was even more uneven tempered than usual. I lost my hobbies.

My grandfather and a great aunt both almost certainly had PMR in the 1950s, pre-pred. I can't remember how long they had had it, but I remember neither of them without it. My aunt had it in her 60s - and died at nearly 90. 

It is believed that once you have an autoimmune disorder you never recover from it in the sense of being "cured". The autoimmune disorder may go into remission - but it can lurk there and revive at some point. I know at least 3 people who have had it twice - 2 of them have recovered again and both say the second lot was far harder than the first which had run relatively smoothly.

If you haven't already seen it, there is lots more info in the links you'll find in this post:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

The other post:

"I "did" PMR for 5 years - but not out of choice! I wasn't diagnosed, I was young (51) and had no abnormal blood tests - my ESR and CRP have never been raised, ESR hit the dizzy heights of 7 once, it is more usually 4. I work freelance so never had to get to work for a given time and it was all sitting at a computer translating. Every morning Mon-Fri I went to the gym for an aquaerobics class in a very warm pool that I could walk down steps into. Otherwise I couldn't have got in or out and the warmth helped, if it was colder than usual I couldn't do the class. After that I could manage a Pilates or yoga class with adaptations. Nothing else in the gym except the PowerPlate. Then I went home to work.

Eventually I had a big flare and could hardly move. Getting going in the morning took well over an hour - I could hardly get out of bed, I couldn't dry myself after a shower. At the same time, for another (incorrect) reason, I had to stop driving for about 6 months it turned out in the end. I crawled up stairs on hands and knees, down like a toddler, one step at a time and couldn't walk more than a couple of hundred yards at snail pace. During that 6 months I researched and eventually found the answer my GP couldn't: PMR with normal blood markers.

I was sent to a rheumy who didn't listen and decided it couldn't be PMR, he wanted it to be anything but. I was going to a meeting n the USA and he gave me a 6 week taper 15/10/5 mg/day for 2 weeks each.  I took the first dose at 10.15am outside the pharmacy. At 4pm I walked downstairs and back up again carrying a cup of tea - something I hadn't done for a couple of years. The cup would be sat on the highest step I could reach, I pulled myself up a few steps, rinse and repeat. I could barely hold a cup of tea to drink it anyway. I was good at 15, OK at 10, I could live with 5mg - but by the afternoon of the first day with no pred I was in bed in tears. The rheumy didn't want to hear - but a different GP listened and gave me pred. It never worked as well as that first taper though. I had a major flare nearly 4 years ago because of being switched to Medrol which doesn't work for me. I had the same miracle the day I started the only other corticosteroid available here.

I have now had PMR for 11 years and it hasn't burnt out yet. The literature reckons about 25% are able to get off pred in under 2 years but as a group remain at a higher risk of relapse. About half take 4-6 years and the rest take longer, some never doing so though of course they may be the ones whose adrenal function does not return fully. The major German rheumatology text says 5 years average duration for PMR. Those figures fit well with what I have seen on the 3 UK forums over the past 6 years or so.

My first 5 years were relatively mild, I could still move after managing stretching/exercise. But that first big flare left me immobile and housebound since I couldn't drive. The contrast with being on pred showed me how much I had modified my lifestyle to accommodate it. Put into a different situation I couldn't function without "my" house with kitchen adapted for me, toilets on each floor and so on. PMR robbed me of most of my 50s, either because of the non-management with pred or because of the flare with Medrol. I can't have them back and I'm nowhere near as fit as I was before. OK, I'm 10 years older, but even so, I'm not old.

If you could guarantee it will burn out in 18 months to 2 years going without pred would be a reasonable option perhaps. If it is mild. Our grandparents did, so can we on that basis. Except we have other expectations and committments - working with PMR is NOT easy, whatever it is you do. And when it gets bad - you may not be able to walk, work, carry out normal daily activities without help - and even not be able to toilet yourself. Or get up off the toilet or out of a chair. 

And it isn't as simple as that. PMR (or its cause) leads to inflammation all over the body, mostly in arteries and the microcirculation. This damages the tissues and leads in the longterm to an increased risk of other cardiovascular problems including peripheral arterial disease, high BP, cardiac problems including atrial fibrillation and other arrythmias, and even some forms of cancer. Using pred does probably reduce those risks. If PMR progresses to GCA that involves the arteries in the head you are at risk of losing your sight without pred. There is some dispute as to whether using pred in PMR reduces the risk of progression, some say it does, some don't.

But - it isn't a straightforward option. Don't forget that."

As to your first question;

"Is there evidence that the time period before commencing with Pred, effect….

 ...makes the disease “bite in” or worse?

Certainly the manifestation of the disease can be made worse for a considerable period of time if you let it run it's course without effective treatment.

By that I mean that the oxygen-starved tissues may stiffen to the point where restoring your shoulder's free range of motion may take months even when on prednisone, though with considerable improvement. There will also be a continual loss of strength of your muscles, and in my case I lost a lot of weight over just the first three months without treatment.

Your second question;

"Prednisone has only been around since 1952. PMR has been around forever...

...Before Pred, during the past 10.000 years, did PMR also burn out after 1-4 years(of course with more constant pain)? My question is if Pred works mostly as a pain killer, and without Pred, the desease would burn out within the same timeperiod, by itself anyway?"

If you have read EileenH's reply, I assume that you now know that prednisone doesn't act as a pain killer, at least not directly.

As for how people survived with PMR in the very distant past, I am sure that it caused a lot of deaths, since any reduction in one's ability to prepare for winter and to hunt, gather and maintain physical strength would tend to be fatal in short order.

I started with pains and inflammation aged 40.Five years later aged 45 and on maximum painkiller dose sent to rheumatologist .Test was large steroid injection in bum.Within 24hours doing jobs I had been unable to do for several years.Followed the standard steroid protocol at the time and was on steroids for 10months.Have had to have two more courses and am now on methotrexate injections as post heart attack could no longer take pred.Now 57 with rheumatoid and osteoarthritis chucked in.Pred does not cure PMR as there is no cure it just reduces inflammation level.You take enough to make symptoms bearable and hope at some point it goes into remission.Good luck.Hope you decide to try pred as inflammation can cause damage all over the body

I too am one of the unlucky ones...10th anniversary this Christmas.  Getting to a livable state the first time took about 10 months.  Had a flair this past August (I was on 10mg at the time)  My internest bumped me up to 20mg and it helped.  Wanted me to go to 15mg after one month but in the meantime I was referred to a Polymyalgia Rhematica specialist (mainly for a bone density scan for osteoporosis because I couldn't take the meds..now on Prolia every 6 months) he asked me how my internest decided I had it...my ESR was nearlly 100 and I was in agony like I've never had before.  That time started with 80mg 1 week, 70mg next week etc down to 40 then slower.  I have had many years in between where everything was very normal, mainly on 10 or 5 mg. 

So this rheumy said I was going down much too fast as others have said.  since early September I"ve gone from 15 to 12.5.  Saw his associate rheumy end of October and she said I also have fibramyalgia.  My blood work at the end of November showed an increase in ESR..the doctor actually phoned me 2 hrs after lab work and made me increase back to 12.5 after I had just gotten down to 10.  However it has not helped and my blood work is due next week and I am presuming I will have to go up some more....same old problems, crawling up stairs, difficult getting in an out of vehicle, fatigue when I do anything.   I am so tempted to take more on my own because I know the pain would immediately go away.  Next appt not until end of January so sure hope she phones after my lab work is sent to her.    I'm in Canada so everything is free except meds and as seniors in our province there is a maximum charge of $20 for any drugs but prednisone is around $15 regardless of how many you are prescribed per day.

I guess I have a low threshold for pain because there is no way I could have any enjoyment in life living with the constant pain.   Everyone has to make their own decision of course.   Good luck with whatever you decide to do but would be nice if you kept us informed

I didn't find any research or objective information on whether taking pred or not changed the course of the underlying disease. The wisdom is that pred simply reduces the symptoms but does nothing for the disease. Seemingly that just has to take its course, which is different for us all.

I had 3 months undiagnosed. I was driving through Asia and opted to continue. A lot of small changes and adjustments. The effort of continuing took its toll. When finally reaching home, diagnosis and treatment it was a bit like hitting a brick wall. I just wanted to stop. Even with pred my activity was limited and my general fitness declined further.

I obviously tolerated the pain. Which at times included involuntary screams. And somehow managed to change gear in the truck. But that's just part of it. There was the very much shortened sight seeing trips, the difficulty of any vehicle maintenance, no more walks up mountains, even a short swim was more just keeping afloat, and someone with me in case I didn't. I'm trying to paint a picture of a very reduced quality of life and more importantly a steady decline in health on all sorts of fronts simply because of reduced activity.

Only you know if you can tolerate the pain and maintain a reasonable level of activity sufficient to remain healthy in aspects other than pmr.

I suspect that while preparing for the pred other things may be lost. Not irreversibly but possibly sufficient to make the journey more miserable than it need be.

To say I didn't enjoy the pred is an understatement. But stuck between the rock of pmr and the hard place of pred I chose the pred. The 3 months without treatment made taking pred an easy decision. By the time of diagnosis I was probably struggling more than I cared to admit, though in my case I had few economic options other than continue without treatment.

Hi, Thomas:  In response to your comment about the last 10,000 years, it is worth noting that all the autoimmune disorders have increased in frequency greatly in the last 50 years.  The increase is real, not just a new recognition of these disorders and better diagnosis.  So relying on our evolutionary adaptation to disease is probably not applicable here.

Also, I view the pain in a PMR as a good thing, in a sense; it is an indicator of how much inflammation there is in my blood vessels.  I use the pain to titrate the dose of prednisone I take becayse it is theinfalmmation I wantto avoid.

If you do not take prednisone, you will not only have pain, you will have inflammation. Chronic inflammation of the blood vessels reduces the flow of blood through the vessels and is being linked to an increasing number of medical problems- for me the biggest on is dementia. Another is temporal arteritis- my eye doctor explained that the reason for loss of vision in this is that the vessels that supply the retina become narrow and are susceptible to being blocked. The nervous tissue dies if deprived of blood- it is essentailly a stroke.  

I have come across the negative effects of chronic inflammation of the blood vessels in articles on a variety of disorders but do not have a good reference that pulls them all together.  Perhaps someone else can help us with that??

Thomas, it is perfectly possible for PMR to "burn out" without steroid treatment BUT at what cost to your body.  I spent several months in bed in agony with a rheumatologist failing to come up with a diagnosis.  During those months I relied on the painkiller, Paracetamol, and the anti-inflammatory, Ibuprofen, just to get me off the bed and to the bathroom.  I spontaneously recovered within 12 months but the recovery was short-lived and even more horrendous symptoms arrived on the scene.  Eventually both PMR and GCA were diagnosed, probably succumbing to GCA because the inflammation of PMR hadn't been treated in the first instance.  I also suffered kidney damage due to either the untreated inflammation or the Ibuprofen, or both.  You have been 'lucky' to be diagnosed, so now please don't take the risk of not being treated.