Is the prescription of steroids for PMR really 'unsafe' ? - as was described to me by the consultant rheumatologist

[51Highland]

I'm new here. After seeing GP and consultants - orthopaedic and rheumatologist - I have not been diagnosed with PMR, in spite of seeming to have every symptom but nothing showing on the blood test. I know that a corticosteroid injection administered by the orthopaedic consultant provided welcome relief for up to a month, but the rheumatologist deems steroids 'not safe' and says that blood tests indicate no PMR.

[Yellowbluebell]

Hi? Not everyone with pmr will have elevated markers in their bloods. As for steroids not being safe, yes there are side effects but these can be managed or minimised. Prednisilone is the only thing that works on the inflammation that pmr causes. Prednisolone does not cure pmr it just manages the symptoms and nothing else works. For someone who went more.than 2 years without a diagnosis even the side effects of pred would not stop me taking it. Pmrpro will no doubt be along in a bit about blood markers as her dont show as raised. Good luck. YBB

[51Highland in reply to Yellowbluebell]

Thanks for that. Exactly as I understood it and I am reassured by your comments although I remain in the hands of medical professionals.

[Yellowbluebell in reply to 51Highland]

They need to give you an alternative if its not pmr and obviously something to deal with pain. Have you follow up appts.YBB

[51Highland in reply to Yellowbluebell]

They have! Paracetamol.

When this is all over I shall have a face to face. It’s a bit depressing at the age of (only) 67 to be told ‘tough, you’re getting old. Suck it up’. Thanks YBB

[PMRpro Ambassador in reply to 51Highland]

They tried that at 52 to me!

[51Highland in reply to PMRpro]

Now that is ‘Ageist’

[Yellowbluebell in reply to 51Highland]

And me at 54

[Noosat in reply to 51Highland]

I do have PMR and down to small dose of prednisone. I have found that if the pain is from the PMR the Tylenol, I think same as Paracetamal does not help at all. In a way this is how I decide if I need more prednisone or the ache has nothing to do with the PMR. Perhaps just overdoing the house cleaning.

[51Highland in reply to Noosat]

I’m sure house cleaning should take a back seat. I cycle every day and the activity helps ease movement afterwards. But tiredness kicks in. We can’t win. Prednisilone is the way forward.

[Noosat in reply to 51Highland]

Wish I could cycle. However, I do walk. I am out of bed by 5:30, but by 1p.m am fatigued to the point of a lay down and read for a couple of hours

[51Highland in reply to Noosat]

Blimey! If I got up at 5.30 I wouldn’t make it that far. No harm in recharging batteries. Then you can face the wild evenings

[DorsetLady PMRGCAuk volunteer]

"but the rheumatologist deems steroids 'not safe"- wont make a comment about that other than -

Blooming glad he wasn't mine then - I'd have ended up totally blind.

I took steroids for 4 and half years - at whopping doses initially... and surprise, surprise 3 & half years after my last steroid I'm still alive and kicking.

Hope you get things sorted soon.

[51Highland in reply to DorsetLady]

Thanks DorsetLady. My consultant is in Wimborne and I therefore doubt he was yours. Glad to hear you're doing well.

[DorsetLady PMRGCAuk volunteer in reply to 51Highland]

I was diagnosed by Ophthalmologist. Only saw Rheumy once about 8 months after diagnosis.

But whatever - no Rheumy however much they don’t like steroids - and an awful lot don’t- they shouldn’t say steroids are unsafe to a patient.

Take care.

[Yellowbluebell in reply to DorsetLady]

Some patients are going to believe that and come off them suddenly ir wirse risk their sight just because of a careless statement. YBB

[51Highland in reply to 51Highland]

👍🏻Thanks again

[PMRpro Ambassador]

What an uneducated rheumy!!!! Probably one of those who think that PMR is beneath him to diagnose They do exist. The orthopod had probably never heard of it! It is strange because here in Italy EVERYONE has heard of it including most nurses and physiotherapists.

One in five patients doesn't get blood marker levels that go out of "normal range" but that doesn't mean they aren't raised for them - my normal level ESR is low single figures, it ran at 16-18 for weeks when I was having a major flare but no-one took any notice as it was still well under the top of the range. The range is found by testing thousands of healthy people and then taking the range of numbers that includes 95% of them - some have very low, others not so low. The only time my CRP was raised was on a day when I had a really bad but unrecognised episode of atrial fibrillation.

Pred isn't "unsafe" - it isn't ideal, but the sort of doses that are used for PMR have been shown to not induce any more problems than you would find in an age-matched group who weren't on pred except for cataracts:

medpagetoday.org/rheumatolo...

There is a link to the original work at the bottom of the article.

But it is the only viable option for management of PMR until it burns out and goes into remission, which it does sooner or later for 95% of patients. The average duration of management of PMR with pred is just under 6 years, only 1 in 5 are able to stop pred without a return of symptoms in under a year, by 2 years it is 1 in 3 - 2/3 of us will have it for some considerable time. I had had it for 5 years before being "allowed" to have pred - and it hasn't gone away long enough to get off pred in over 10 years since then. But I haven't crumbled in that time - in over 7 years my bone density hadn't changed and was still normal, I gained weight and I lost it, my skin and hair are fine, bruising is more due to my anticoagulant therapy then pred and, much to my disgust, I have no sign of cataracts! Most adverse effects of pred can be managed when you know how. And above all in PMR: it reduces the risk of the PMR progressing to become GCA - and then it is high dose pred or risk visual loss.

Maybe "interviewing" other GPs might help - the one I saw had no idea what it was and sent me to a rheumy after I'd spent many hours online researching what it could be and found PMR. The rheumy in the NE of England wasn't convinced, wanted it to be anything else in the form of inflammatory arthritis and offered sulphasalazine. Luckily I needed to have a consultant to monitor it and I was about to move - and the rheumies I have seen here have all been happy to manage it as PMR. But a different GP in the practice recognised it when I walked in the room - I hadn't seen her before because she was part-time and on maty leave. So it is worth asking around - if you can of course at the moment.

[51Highland in reply to PMRpro]

That’s brilliant PMRPro and very interesting. Of course it makes sense to ‘interview’ another GP. Or pay to go private. I find it very debilitating and quite depressing as i am starting to feel (and sound like an old crock. I am going to cycle 500 miles for charity (now in September) and I’m really not looking forward to it. But I’m doing it nonetheless.

Thanks so much for taking the time to reply at such length.

[PMRpro Ambassador in reply to 51Highland]

I certainly can't understand why anyone would consider paracetamol as safer than low dose pred. Especially since it doesn't do much for PMR.

Where are you in the southwest? Maybe someone can recommend a good local option - one who does private will often add you to their NHS list.

[51Highland in reply to PMRpro]

Near Sturminster Newton, North Dorset. 45 mins from Poole or Dorchester. Good idea thanks

[PMRpro Ambassador in reply to 51Highland]

Dorset Lady may know of someone.

[51Highland in reply to PMRpro]

Indeed

[Daisyfield]

I had fairly sudden onset (over about a week) bilateral shoulder pain. Aching deep muscles in legs. Really painful to lift kettle.

All bloods have been normal.

Classic signs so GP did a diagnosis on response to treatment. Had fairly instant relief to 15mg.

A couple of flares since.

Hoping to reduce to zero next month.

Our GP doesn’t refer PMR unless complications or unsure of diagnosis.

[51Highland in reply to Daisyfield]

Oh for a GP like yours. Our ‘old school’ GPS have long ago moved on. Thanks

[Daisyfield in reply to 51Highland]

She's v good, but she did want to put me in allendronic acid, but advice on this forum made me insist on bone scan...which was pretty much normal, so I didn't take the allendronic acid.

I haven't been given much advice from GP about dos and don'ts about diet exercise etc.

[PMRNewcomer in reply to Daisyfield]

Your onset sounds exactly like mine. My blood markers were in the normal range also but my GP was advised by the rheumy specialist to do a week’s trial on 15 mgs Pred. Within 5 hours I felt the pain lifting after 5 weeks on 15mgs GP has reduced me to 12.5mgs. I have done 2 days on this lower dose and so far so good.

[Daisyfield in reply to PMRNewcomer]

I found the first three months the hardest...really achy and tried. Bizarrely, a 2 week family holiday seemed to be a complete re-boot, battery change.

I do feel much weaker than I did re-PMR and muscles feel achy tired, but not muscle-sick as they did early PMR.

[PMRNewcomer in reply to Daisyfield]

To be fair, I haven’t felt as well as this in years. X

[51Highland in reply to PMRNewcomer]

Hurrah! That is so good to hear. I’m so pleased.

[Hidden]

What were your symptoms. I'm relatively newly diagnosed with PMR in Dec last year. I couldn't get out of bed one morning from the muscular pain in shoulders, hips and knees. I was being treated for quite a long time with Osteoarthritis, which of course many of us have as we age. However, this pain was't joints but muscles. My ESR/CRP markers were considerably elevated, so that was good enough for my rheumatologist to make a good diagnosis of PMR. I was started on quite a low dose of prednisone 15 mg reducing to 10 mg after 2 weeks, probably too soon for the reduction in retrospect. I personally now think that PMR had been growling on for quite sometime prior to my diagnosis. I had symptoms for maybe a year, little niggly things that I now put down to PMR. The headache I experienced was a weird one. It started with a weird feeling on the right side of my head, pretty much the same time every morning, felt like a tingle to begin with.....not sure if GCA was in the background too at this stage. Slight tender head too. But GP was putting all that down to a couple of discs in my neck that proved via an X-ray that my C4 and C5 discs in my neck were worn, again like many of us at out age. One has to be careful if PMR is left untreated that it doesn't turn into Giant Cell Artritis (GCA) I'm no expert on both of these diseases, but learned such a lot since joining this Forum with many, many helpful women that have helped me. Unfortunately, due to jaw pain (that again is a symptom of GCA) I had to increase my steroids to 40 mg for 2 weeks with reductions of 10 mg every 2 weeks. My ESR/CRP markers are now back to normal. I must say it's baffling that some people get their inflammation markers go very high while others don't....but we are all different. Good luck

[51Highland in reply to Hidden]

Interesting. I don't think my symptoms started as severely as yours. But getting out of bed was certainly a huge challenge one morning.

I felt as though I had run a mountain marathon - all the gluteal muscles, the quadriceps and the hip bones felt incredibly stiff and painful. The upper arms and shoulders ached and lifting anything above my head was difficult. Sleeping on my side was difficult and I had to wake up and turn over because of the shoulder and hip pain every hour or less.

Added to the pain and stiffness there was almost no power at all in the legs for things such as going upstairs, although calf muscles and anything below the knee were unaffected. Sitting down (e.g. in the car) for an extended period brought on the same effect but nothing so bad as getting out of bed.

2 GPs, one orthopaedic consultant and one 'Rheumy' all refer to the blood tests which are not only normal but 'good'. However my very first trip to the GP complaining about the weak legs and 'I ache all over' made the GP immediately go to my upper arms and ask if they hurt. I was amazed and then he explained all about PMR. But he had been a locum and when the blood tests revealed nothing I was seen by the usual GP who said it can't be PMR and anyway 'you don't want to be on steroids for a year'. A friend of mine, fed up with his GP had self-referred to a Rheumy and they had diagnosed PMR by administering Prednisilone to see what happened. His cleared up in 18 months.

But what I have discovered by reading this forum is both encouraging and depressing. On the one hand I want to feel well again and I believe this can only happen by taking the steroids as a last recourse. However, I don't want to take them for ever and I don't like the sound of the side effects, even if they are relatively rare. Throw in the potential complications of not treating PMR and the decisions become more difficult.

I am certainly not as badly off as many out there and I don't want to moan too much, but I am unused to being below par.

Bit of a ramble, sorry. I wish you lots of luck and good health in the future.

[Hidden in reply to 51Highland]

Are you one of the younger members on the Forum 51Highland ? Not that age seems to matter as quite a few are in their 50's and early 60' even though the internet says PMR is more common in 70's and over. Certainly sounds as though you do have PMR to me and it should be treated and promptly in my humble opinion and get your life back. Even though your inflammation markers are normal as many others on here were too...strange how that happens as PMR/GCA and any other autoimmune disease is usually driven by inflammation I think.

[51Highland in reply to Hidden]

Thank you for your helpful and encouraging reply. I feel as if I am young but in reality I am a youthful and very active 67 year- old.

[Daisyfield in reply to 51Highland]

This mirrors my experience...you’ve reminded me about the waking up to turn over and how painful it was.

[51Highland in reply to Daisyfield]

Yes. It’s the most annoying bit. Hoping you are way beyond all that

[LIVEORDIEHEREIAM]

I suspect your GP of not being much of a communicator. Could it be that he was saying that prednisone is dangerous in the current crisis? That is true because it would compromise your immune system in the midst of the pandemic.

He might have finished his sentence!

Moaning at this point in your journey is not only reasonable but required as a stress reliever! Stay with us in the forum! You will learn sooooo much that the health providers will never tell you!

Good luck!

[51Highland in reply to LIVEORDIEHEREIAM]

Haha. Thank you. Yes, I’m sure you’re right as all anti-inflammatories seem to weaken the immune system. Right. Once this war is over I shall plant my feet in his In Tray and repeat my complaint.

Certainly helps to share a problem but I’m not sure it’s halved.