Hi everyone, I'm new here but have suffered from PMR for over 4 years now.
It started at the age of 67 and in just a matter of hours progressed from some low level back pain to severe pain virtually everywhere. Like many people here I was proscribed 40mgs of Prednisolone a day, reducing fairly quickly to 20mgs and very gradually down from there. However, also like many here when eventually arriving at 6 or 7 mgs dosage, the pain returns. In my case I have been at this level several times and always having to return to a higher dosage. I'm currently on 10 mgs but not completely pain free either.
I've almost given up hope of ever being free from this medication, and most doctors say there is no effective alternative medication but also say that prolonged use is not recommended?
Does anyone have any comments from their personal experience about side effects of long term use? I think thinning skin and easy bruising could be attributed to this but equally to the aging process?
Appreciate any comments
Martin
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Just a (not so..) quick reply from me but I'm sure you'll soon get some helpful responses from the many experts here.
Your journey with PMR / Preds sounds quite typical - especially at the infamous threshold of 10 mgpd day and under (it varies according to the individual). Many here (including myself) report immense problems in reducing from this range with pain, stiffness and fatigue returning with a vengeance. It seems that this is because at these levels the 'sleepy' adrenal glands (previously supressed by higher levels of preds) are being encouraged to start work again - and they can protest loudly! The symptoms you describe fit this very well and, of course, can be exacerbated by over-activity, stress and factors like the flu.
The wisdom around Pred being (sic) 'the only effective treatment for PMR' is reliable, as far as I know. For a few patients, other remedies appear to work but Pred is known to be the Gold Standard for PMR and it seems to be effective for the vast majority of patients. That said, Pred (like many other medications) does come with its own side effects - and managing these, also, is part and parcel of dealing with the illness. It really is a catch-22 in terms of long-tem use of Prednisolone, but the experts here will probably confirm that the choice is simple: without it, you have little or no quality of life and crippling symptoms, possibly indefinitely. With Pred, you can resume some quality of life and activity, albeit with a pay-off in terms of managing its many potential side effects (as you suggest).
On the positive side, I think the main point to keep in mind is that PMR is not dangerous / life threatening - but it is a nasty set of symptoms produced by an underlying auto-immune illness - and you do have to be a 'patient' patient on the journey! Also, at lower levels of Pred (typically <10mgpd), it appears that the risks of bone / skin thinning are lower (according to my rheumatologist, at least). Again, you'll get lots of good advice on, and support around the subject from others here - including from a few who have successfully reduced to more or less 'zero'. Watch this space!
And yes, we are all getting older while we have this condition (who isn't?!)
I like your reply, MB. My wife's symptoms returned when she went between 10 and 7.5 mg, and got really bad below 5 mg. This is what the rheumatologist prescribed, especially because of her diabetes. But here PG said even though the side affects who be bad for diabetes and her bones, the quality of her life needs to improve, and in his words, she "has no choice but to increase the dosage" NOW.
Thanks navejasjoe. Yes, it really is a trade-off, the rheumatologist sounds on the ball in terms of your wife balancing the side effects with some relative quality of life in the meantime. I think this is the challenge many of us face with PMR / Preds, for better or worse
Let me clarify. The rheumatologist seems intent on cutting out the prednisone because the blood tests show no inflammation, even though my wife's symptoms have returned. It is her primary care doctor who is treating her diabetes that says that her quality of life right now is more important than looking out for the side affects of pred.
The rheumy is wrong - the PCP is right. The symptoms always trump th blood markers - they may not rise again until the symptoms are really bad and well established.
I'm sure that others here (more expert then I) have said / will tell you that if blood tests (ESR / CRP) show 'no inflammation', it's more likely to be because the preds are controlling it sufficiently! It doesn't necessarily mean that the PMR has gone into remission. Also, many here seem to agree that Symptoms are the most reliable indicator of whether PMR is active or not, and treatment should be geared to this more than an arbitrary opinion, even from a doctor or specialist.
This seems a strange rationale from a rheumatologist who should be better informed about the process. But then, not all rheumatologists are on the case with PMR either :-(.
I don't profess to be an expert, but it does seem that your GP (primary care doctor) has the better attitude. That said, context is all, and I'm sure you'll get lots of helpful responses to this one.
MB
Hi Martin,
Welcome, a great reply from
markbenjamin57 we are quite a high female group, so good to get a guys point of view, but we are all in this together.
I've been on Prednisolone for 5years, started at 15mg; could get to 11mg then it all kicked off again, so back to 15mg & start again.
During the course of this l had a bad flare & Rheumatologist put me on 30mgx1week; 20mgx1week; 15mg1week then start reducing again, this is where the more subtle side effects kicked it, l became rather excitable & very 'high' (not so subtle!) the already chubby face ballooned, the weight started to rapidly increase & when he then repeated same regime again as I wasn't doing that well, it kicked off high BP; issues with my vision; becoming very out of breath when walking & shortly after spontaneous red spidery bleeds just under my skin.
My GP to be fair was very concerned & got intouch with a friend at another hospital & he wanted to admit me but we all settled on a new Rheumatologist.
Long story, short, I'm now down at 6.5mg & holding (just) The weight melted away as l dropped the steroid dose, l'm still on BP Meds; l do get out of breath but nowhere near as bad & I've never seen the little spidery bleeds again!
I've had other health issues in between, unconnected, I'm still a stone overweight but managed to shake off two stone, I'm on Methotrexate as a Steroid Sparer, it's not for everyone but it turned a corner for me, so for that I'm grateful.
Prednisolone is a double edged sword, it has side effects but without it we'd all be in pain & for those with GCA the option is unthinkable. So that's why we all aim for the lowest dose possible to enable us to continue to have a life with some compromises.
Martin, keep your skin well moisturised especially your arms & legs, your Doctor will give you something, l think the ladies on here would recommend Double Base? but someone will confirm that either way.
Hope you find a dose that suits you & maybe you should settle there for a while & then consider tapering slowly to see if you can achieve a lower dose, as I said I'm at 6.5mg but will be there for at least two months as I'm off to the Far East but if l need to go up to remain well, then so be it! I'm getting my routine bloods done next week so we'll see what that shows.
Martin, I forgot to mention - we also have a lot of fun and witty banter on this forum in between the more serious stuff. It helps to have a giggle when the going gets tough!
As I've said a few times this week - if you get to a low-ish dose and the symptoms come back, and that happens a few times it is a sign that you have reached your objective: the lowest dose that manages the symptoms as well as the starting dose. For now at least. YOu may well get lower later.
I have had PMR for more or less 13 years. I have been on pred for heading for 8 years now - and nothing would induce me to go back to those first 5 years! I managed by going to the pool and doing an aquafit class every day Mon-Fri - after that I could at least move, but the pain never ever left. I slowly developed quite severe hip bursitis and had textbook symptoms except for raised blood markers - but the GP didn't get it. Actually, neither did 2 rheumatologists. 15mg of pred took me from that to being able to move normally in under 6 hours.
As the others have said there is no alternative to pred for PMR - an RA drug called tocilizumab looks promising - but it costs £12K or so per year. There are rheumies using it for patients with probable PMR in the USA and in Australia - it looks pretty good but it too has some very hefty adverse effects.
The literature has suggested that for 75% of patients it takes from 2 to up to 6 years to get off pred. Or, alternatively, for 75% of patients it takes over 4 years to get off pred. The standard German rheumatology textbook suggests an average of 5 years and an Italian research team found that while methotrexate did allow patients to manage on a lower dose of pred in the short term, overall the patients in both groups had similar levels of adverse events due to pred and that one third of patients still required some pred after 6 years.
In my experience, unmanaged PMR leads to weight gain, depression, immobility which is a major risk factor for osteoporosis and an almost total reinvention of your life - you lose friends and hobbies, even your job or career. Your walking is poor - and you are at risk of falls, a major risk factor for fractures. Which to me sounds pretty parallel to what they claim pred does.
That said, I gained a load of pred weight on one form of steroid - and lost it again, my hair went mad with the same form of steroid, and is back to normal with another. My skin is fine - always has been. But like someone else who has also had no problems - I very rarely use soap on my skin and when I do, I moisturise it.
In the 8 years I have developed raised BP but I also have atrial fibrillation due to the autoimmune part of PMR (both well managed), my total cholesterol is high, but so is my HDL which contributes and I don't take a statin (it was worse than just PMR), I have no sign of diabetes or cataracts, and my bone density has remained fine despite not taking alendronic acid.
It does depend which side effects you develop - but many can be dealt with, even avoided, and others are infinitely preferable to the alternative of unmanaged PMR
As Mark has said, reducing below 10mg starts to pose other problems but it is often possible to circumnavigate them and get to a lower dose. Many have done so using this approach:
There are people who have to take pred for life for other conditions, ones which don't go into remission as PMR does eventually for three-quarters of us. Long term pred isn't ideal - but then, neither is long term ill-health.
Good replies already, and yes, thinning skin and bruising is a long term effect, as can be raised glaucoma pressures, onset of cataracts, raised blood sugars, all on the bad side, but some find an improvement in hair, nails etc - hence Mrs Nails nomenclature! Most side effects lessen as you get to lower doses.
Some people are never completely pain free, but you must also remember that at lower doses, the normal aches and pains of life come back - high levels of Pred mask most pain - plus you're a little bit older as well!
As you've found around the 7mg level can be very difficult for lots, as Mark says the old adrenal glands need to start working again, and they haven't since you started Pred. In your case (and mine) 4 years is a long time doing nothing!
I really struggled between the levels of 6mg down to 3mg despite slow taper of 0.5mg a time and over a number of weeks, rather than an overnight drop (one day old dose, next day new dose). There are various slow plans, or devise your own if you don't do that already. Much easier on the body, it doesn't seem to notice the drop that way.
I always thought the reductions at lower doses were much more difficult than higher ones, you're asking your body to accept a much bigger reduction in percentage terms (1mg at 20mg is only a 5% drop, whereas at 5mg it's a 20% drop - hope that makes sense) and it's likely that you're nearer the level that is just controlling your symptoms.
Thanks very much for the replies, plenty of food for thought there. My Dr did mention methotrexate at my last visit as a possible way to reduce the Pred dosage but perhaps that introduces other unpleasant side effects.
The 0.5mg size tablets have been discontinued apparently so I assume that a pill cutter is the best way to reduce dosages gradually?
Perhaps I could take up bungee jumping as a way to get the adrenaline glands producing again.
More likely to send you into an adrenal crisis I'd have thought
MTX works for some people - it can change the way your body processes pred so you get more bang for your buck and a lower dose has the same effect. As long as you don't have any adverse effects I suppose it may be worth trying. PMR has similar symptoms to the early stages of late onset RA - and if the dx wasn't 100% sure originally then the MTX would be helpful there. And of course, you can have both I'm afraid!
It was my feeble attempt at a joke, at 71 I'm slowing down a little, although a friend of mine who is 2 years older than me still rock climbs to a fairly high standard!!
For me the most distressing thing was how quickly such a debilitating affliction could develop, for no apparent reason, and just as quickly be suppressed by a daily 40mg dose of Pred. At that point in time I hoped, as perhaps many sufferers do, that it would only be a temporary condition.
However, as I often remind myself, you only need visit a hospital to realise how much better off you are than many others.
Martin, yep. PMR really does creep up quietly and surprise you.
I thought mine was post-viral or similar (I'd had a bout pneumonia just before its onset). Week after week of crippling (literally) stiffness and immobility. A Herculean effort to get out of bed or a chair - not to mention in and out of the car. In your (one's) ignorance of PMR, you think / hope it will pass - but it doesn't. And then there's the exhaustion...
As you say, once the 'magic' preds have got into the system, the almost instant relief from the worst of the symptoms seems miraculous. I was lucky to get a provisional dx and preds from my GP after a few truly miserable weeks. But the crazy thing is that some people go on for months or years before getting a dx and appropriate treatment.
On the positive side, 'straight' PMR isn't life threatening so, as you also say, a visit to the IT ward in a hospital puts things into perspective
I had juvenile RA when I was 15 which lasted for one year but fortunately never reoccurred in later life. Perhaps its something that has remained dormant in some bodily recess all the intervening years and finally triggered manifesting itself as PMR, who knows?
Or perhaps it is the RA - there is no real way of telling unfortunately. Putting you on to 40mg would also have suppressed RA activity - the use of a relatively low dose of pred (15-20mg) is one way of having a look. PMR typically responds in a very short time while inflammatory arthritides tend to respond less dramatically even when they do respond. 40mg is a bit of a sledgehammer to crack a nut.
Most autoimmune disorders that do go into remission remain dormant - and can reawake at some later point. Even when they are treated with drugs to achieve remission - it is rarely a cure.
Martin
I find cutting the 5mgs in half to 2.5mg easier, then using 1mgs to make up the required dose, obviously if I'm ever lucky enough to get to 1.5mg or even 0.5mg I'll review it!
When I had juvenile RA I had the classic symptoms, swollen joints and stiffness first thing in the mornings. PMR in my case doesn't involve any swollen joints , just tendon or muscle pain.
I can get 2.5s in the USA. Ask the pharmacist. Here the uncoated prednisone comes in 1, 2.5, 5, and 15 - maybe higher, hopefully I won't ever need to find out!
It is possible some are no longer easily available.
Rayos comes in 5, 2 and 1mg delayed release tablets.
Prednisolone comes in 5 and 1mg plain tablets. It is also available as 1, 2.5 and 5mg as an enteric coated/gastroresistant formulation, only in the UK.
Due to the opiod addiction epidemic, there aren't many places in the US where you can get a paper prescription filled anymore. Most states have adopted electronic prescriptions sent directly from the DR to the pharmacy, and the number of scripts written per drug and per DR is actually tracked now.
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Side effects of Prednisone
Methotrexate use and side effects
Dosing Prednisone at end.
Getting off Prednisone
