Just Diagnosed

I would be cautious about that approach. The reason bring pmr is caused by inflammation, which is what the prednisolone is acting on. Uncontrolled inflammation can lead to GCA. I speak from experience, it took my Rheumatologist and GP 14 months to diagnose, as I was too young at 46. 3 months after starting steroids I developed GCA symptoms. Now only 1 in 5 progress to GCA, but when your sight is at risk, it is a big risk to take in my opinion. Good luck x

Thank you runrig01 - I'm at sixes and sevens at the moment, I already have optic nerve damage so trying to figure out which is more likely - damage by steroids or developing GCA. I must admit I'm a bit frightened by it all

Hi Wendy

I had a similar experience to Runrig, with PMR remaining undiagnosed for a year, and only being diagnosed when GCA arrived on the scene.

GCA requires a very much higher dose of steroids to get control of the inflammation and protect eyesight, so I'm really a believer in treating the PMR to reduce that 1 in 5 risk of succumbing to a potentially more serious illness which carries risks of other serious conditions, not least irreversible loss of eyesight.

I can so understand your fear about taking steroids when you already suffer from optic nerve damage, but surely that very condition could put you at risk of further damage if GCA arrived on the scene. In that case 40-60mg of steroids would be urgently needed to protect your eyesight, whereas 'just' 15mg is generally recommended for PMR alone.

I think you would be wise to take advice from a highly experienced ophthalmologist. As far as high blood pressure is concerned, that can be kept under control with appropriate medication, as can glaucoma with drops. I have both.

Meanwhile, a little time off from your job, especially if it involves stress, may help with your pain levels - sadly there is no cure and PMR has to run its course for up to two years at least.

If I had tried to "tough it out" I think I would be in a wheelchair in a care home by now. The steroids really are a wonder drug and after a few hours I could actually move again, it was quite a miracle. I could never go back to that pain. I don't think I could have put up with the pain for several years until the PMR burnt out just to avoid taking steroids. Also I was so worried about getting GCA and going blind.

You can always take the steroids for a week as a trial and then stop.

Thanks Piglette I do feel lucky that I'm in the position to be able to even consider making the choice. Reading through many of the posts on this forum has made me feel a bit of a wimp- It can be such a terrible illness and people face it with such strength

Hi, I had what I now know to be undiagnosed PMR for over 3 years, then I developed jaw pain and face pain - almost another 2 years before diagnosed with Pmr & gca which has meant although really lucky not to have lost my sight I have had to go on a much higher dose of steroids so wish I had been diagnosed and treated early. I now have at least 3 years on steroids .... So please think carefully before trying to tough it out etc

Thanks Lesley - My GP picked it up at first visit - I was so surprised that so many GP's seem "behind the door" I'm very concerned about my eyesight as I already have damage to my optic nerves. I'm trying to establish which is the higher risk factor - further damage caused by the steroids or developing GCA. Currently reading research papers where I have to google every third word

I doubt they'll help - if you don't understand the language you can very easily misunderstand what is being said. Even I struggle at times and I don't have to google the language - I've spoken it most of my life as a scientist in a scientific family! All working in medical science!

And anyway - even the experts can't agree about anything to do with PMR/GCA other than that pred is the currently still the mainstay of management.

I did have to tough it out for 5 years because, like runrig it was beyond the wit of man to diagnosis me (I say man because the men in the practice couldn't, there was a woman who would have but she was on maty leave!). I was (just) "old enough" but had normal blood values. The days I could go to an aqua aerobics class in the morning I could move at least but I was rarely not in pain, not severe but grinding, constant pain and so tired. I couldn't lift things out of a cupboard but my kitchen was designed to accommodate that - until we moved, no drawers, all high level cupboards for the crockery and things I used daily. That was an eye-opener as to how limited my life had become. So was being stopped from driving for something else - I was housebound, I couldn't go anywhere I couldn't drive to and park close. Public transport was next to impossible - not a lot of barrier-free buses and trains 10 years ago!

Eventually I had a total meltdown - they were still clueless, the only offer was Voltaren suppositories - and spent the 5 months I could barely move and wasn't allowed to drive for another reason (wrongly) here in my holiday flat in Italy (no stairs and a short flat walk to a shop) searching the internet to discover what it might be. I found PMR, went back to my GP who referred me to a rheumy. I was given a short course of pred (6 weeks, 2 weeks each 15/10/5) and 6 hours after taking the first tablet could move normally. The consultant didn't want to know - it was then I found the woman GP who recognised what I had with no difficulty.

The last 6 years haven't been easy - I was fine on prednisolone in the UK but had to switch to Medrol when I moved here to Italy. That was awful, I put on weight and grew a beard - and on top of it all it didn't work well. After 9 months I was switched to prednisone - and had the same miracle as with the first dose of pred. I'm still on 5mg. I've had PMR for 11 years, I don't think it has gone away at all in the meantime.

It isn't just the pain and stiffness. Yes, that is liveable with and can be managed if you have the time to do it. I was self-employed so could go to the gym for aqua classes in a warm pool, time in the steam room, Pilates, yoga adapted for me. But the pain and fatigue was always there. I went to bed at 8.30pm and struggled out at 8.30am - and didn't feel as if I'd had any rest. What does the long term damage is the inflammation in the blood vessels and elsewhere in the body. That can lead to cardiovascular disease later and even put you at increased risk of some cancers. You are immobile - which leads to weight gain too, I put on as much weight in the 5 years untreated as in the first 2 years treated. Being immobile also increases the risk of osteoporosis, it is an even bigger risk factor. Depression is a risk - the constant pain alone can lead to that but it is also part of PMR, the two aspects together make it very likely. And believe me, PMR itself doesn't do your emotional state or temper any good at all! I'm far more even tempered on pred than I was without it.

It is disputed whether not treating PMR makes it more likely you will go on to develop GCA. Some of us are sure we have seen a publication from experts that said that - but we can't find it! What is certain is that 1 in 5 or so of patients with PMR go on to develop GCA - but GCA can present as PMR, it just depends on which blood vessels are affected to start with, so unmanaged PMR that is really GCA can continue to get worse.

How long have you had it? Your mental function with PMR may also deteriorate as time goes on - I know I used to struggle to concentrate and would read a page, even just a paragraph I'd just translated and wonder was it correct and did it make sense? I suspect it didn't always! My memory was definitely not what it had been and is again now. I snapped immediately at poor service in a shop and when things didn't go well I could have a real paddy. I'd never suffered fools gladly - and it was far worse with PMR. That was pre-pred.

You do have good reasons for NOT taking pred - what does your eye specialist say? I have hypertension - possibly due to the pred, but possibly merely undetected previously judging by other findings, and it is managed well with medication. I also have atrial fibrillation, most likely due to the autoimmune part of PMR damaging the electrical system in the heart. Also managed with medication.

There has been a clinical trial of tocilizumab in GCA, we are waiting for the results. It is/was intended there should be one for use of it in PMR. I have heard a rumour that that has been discarded - after all, no healthcare system is going to agree to fund a drug that costs about $17,000 a year when pred costs so little and works (though it doesn't work as well as they think) so why spend the time and money on a clinical trial. Be that as it may, there are experts in the US who are wanting to give it to patients with PMR - but that all depends on whether they can find funding/are rich enough to afford to pay for it. There is no proof it works though.

I can't think of anything else. I'm sure there is. It isn't a simple equation of pred bad, no pred good.

Thanks PMRPro

I've had it for quite a while. Putting it down to having a desk job and age (machinists neck as they used to say). I dropped on a medical programme and found myself answering yes to everything the GP asked a patient. Thought I'd better check it out with my GP. Gave her my symptoms without mentioning what I thought it may be and she picked it up straight away (possibly she watched the same programme !) If she hadn't I would have suggested she consider it though. After a slow start in the morning I can manage fairly well during the day. I have full movement although I can feel every one of the moves that I make and sometimes even the moves my clothes make. My memory seems no worse than usual and I haven't noticed a difference in concentration. I'm trying to get as much info together as I can re: eyes and will speak with my consultant or get my GP to contact him before going ahead with anything.

I've had high blood pressure for 25 years (courtesy of pregnancy) but it is well controlled by a low dose of a beta blocker and I am concerned that the steroid will disrupt this.

My GP seems quite reasonable about my wanting to consider all the options and I'm hoping for her support for whatever I decide.

It is something that seems to rarely be discussed on this forum, but on the other 2 PMR/GCA forums we have had long discussions in response to questions as to things we can do to make life easier - because even with pred many patients still have problems in the morning. In that case the earlier you take your dose the better but there is a whole range of other suggestions people came up with. As I say, aqua aerobics in a WARM pool was the best thing for me to make the rest of the day less painful, once you can move more movement definitely helps reduce the myogelosis. Some people found an electric blanket used in the morning BEFORE getting out of bed made getting dressed less of a trial - I had to get clothes on within 5 mins of leaving a warm bed or I had no chance of getting socks or a bra on!

There is also something called myofacial pain syndrome which is related to PMR in some ways except the cytokines (the inflammatory substances made in the body) are concentrated in trigger spots on either side of the spine in shoulders, about waist level and low back, forming knots of hardened muscle fibres which can lead to referred pain which can be quite similar to that of PMR. I have always had that alongside my PMR and an osteopath and a Bowen therapist helped keep me upright for those 5 years - I still have Bowen therapy now and the 3 years I couldn't find a local therapist I could afford were pretty bad. If you take away that extra pain and stiffness it makes the PMR itself easier to cope with. Massage is a bit trickier - it can release the cytokines from the trigger points into the circulation and lead to more systemic stiffness, all over like the PMR. If you are aware of that though, a good sport massage therapist can eradicate the trigger spots if they work on them long enough - after 9 months, twice a week, there were still residual bits in my shoulder!

What are the names of the two other forums please.

One (pretty much the original PMRGCA forum in the UK) is on the patient.info website

patient.info/forums/discuss...

and the other was set up some years ago by the northeast of England support group and is here:

pmrandgca.forumup.co.uk/ind...

Thank you so much

Hi Wendy.

Think your question has been answered, but I'll add my five eggs anyway.

Was undiagnosed with PMR which then led to GCA (and therefore no Pred) for 18 months- only diagnosed after I'd already irretrievably lost the sight in one eye. This was on the 4th day of blurriness in my right eye following head pains, diagnosed as a trapped nerve. At diagnosis I was told there was a high risk I would lose sight in other eye. Fortunately I didn't and I know my case is quite extreme, but my message is take the Pred, it's the only thing that will protect you! Yes the side effects can be nasty, especially at high doses (been there, got the t-shirt etc,)

but they recede as you reduce, whereas once your sight has gone it's gone!

Lecture over!

Wendy, just chipping in with my experience. I self-diagnosed myself as having PMR roughly a year before a doctor did. When I saw it could only be treated with steroids I went into denial, believing that I could not possibly have anything needing such a dire treatment. When the time came that my new doctor prescribed pred I was in such a condition I didn't even go home after the appointment. I went straight to the pharmacy to fill the prescription and took the first dose as soon as I could. I felt a little bit better within a few hours, by the third morning (two and a half days after first dose) I was feeling 1000% better - even non-PMR aches and pains had vanished! Eight months later, now enduring the depredations of pred, I know I made the right choice. My eyesight is precious to me and I would never want to risk untreated inflammation developing into GCA.

Just agreeing with all the comments you've received re yes/no to pred. Won't bore you but I was in so much pain before proper diagnosis that I had morphine. Once diagnosed started on 20mg pred I was painfree within days. Sadly, my PMR has been "agressive" so I been on larger doses, then reduce, then back to larger doses and unfortunately I then developed GCA. Thankfully my eyesight has not been damaged so I wouldn't hesitate to go ahead with it. It's a wonder drug, but the side effects are what they are and hopefully you will only have a few or none. Good luck with your decision. I know of some people who have had PMR and it's "burnt" itself out in two years. We're all so different. I hope you're the lucky one.