Some positive news!

[flygirl65]

With all the awful things I’m reading about prednisone it’s a wonder any of us would take it. But having PMR pain so bad you can’t get up is a pretty compelling reason. Newly diagnosed and shocked I started talking to a lot of people. I found in my own immediate group of friends two people with it. Both treated successfully with Prednisone and weaning down with great success and no side effects. I just thought I’d share some positive news so we can have hope that we too can be one of the success stories! The mind is a very powerful tool! Good luck everyone!

[DorsetLady PMRGCAuk volunteer]

Shows you shouldn’t believe everything you read. 😉

Quite a lot of success stories - in fact they outweigh the bad ones, but they probably don’t get as much air time.

[Nextoneplease]

I agree flygirl 😊

I only have to think back to the pain and immobility that I had early in 2021 to remember why I still take pred, despite its disadvantages. Nothing, but nothing else helped.

And interestingly, I also found that three of my friends either had PMR, or had had it recently (think it had been less obvious as some people I hadn’t seen during the lockdowns….) One took four years to get off pred, one two years, and one is still on it and struggling to reduce (as I am). So, all had benefitted from pred, and half had got off it with reasonable ease…

Thanks for the positive post and all the best 😊xx

[Pegasu in reply to Nextoneplease]

My mum's GCA was cured with pred and she was on it for two years. My cousin has just come off it after three years and he is ok now. Like you I am in so much pain I will do anything to get rid of it so I am happily taking a higher dose now, even though my GP panicked when I got palpitations, and will go even higher just to be able to walk again.

[Nextoneplease in reply to Pegasu]

Hi Pegasu 😊

Family history is interesting isn’t it? My mothers first cousin suddenly lost the sight of one eye about fifteen years ago, she was told she’d had a type of stroke, but looking back, I wonder now whether it was GCA. And weirdly my father told me 25 years ago never to ignore pain in the pinna (outer ear) because it could presage eyesight problems….and dad was registered blind. I think there may have been a lot more PMR/ GCA around than was actually diagnosed…..

Hope you feel better soon xx

[PMRpro Ambassador in reply to Nextoneplease]

Effectively GCA IS a type of stroke - deprivation of blood flow to nerve cells in the optic nerve. 15 years ago that sounds like a doctor covering their back for not recignising GCA quickly enough

[Nextoneplease in reply to PMRpro]

Yes 😊Although it wasn’t a local doctor who diagnosed her. She’d driven to the Isle of Wight from the midlands to see family and woke up on Christmas Day lacking the sight of one eye. The hospital put her on a drip for several days - presumably saving the sight of the other eye - but she never seemed to get a more specific diagnosis than ‘stroke’. Mum’s cousin wasn’t (and isn’t) one to ask questions!!

[PMRpro Ambassador in reply to Nextoneplease]

Noddy-speak for the plebs ... But yes - at least she got high dose infusions quickly or the other could have gone too, 50/50 chances.

[Pegasu in reply to Nextoneplease]

Hi Nextoneplease, thank you. My mum was diagnosed with polymyalgia but I can see it was GCA as she had lumps in her scalp, was bedridden for a while and was told she could go blind or have a stroke. This would have been around 1989/90. They told her it was the shock of losing my dad. Odd that I just had a bereavement before I was diagnosed. Stress is to blame for any number of illnesses.

[Nextoneplease in reply to Pegasu]

Yes, I am sure that stress is a big factor in many cases. Each time I’ve been ill in my life, it’s been preceded by a period of substantial stress. Coincidence? Who knows?

Glad your mum benefitted from pred and hope you feel better soon xx

[LIVEORDIEHEREIAM in reply to Pegasu]

Pegasu, I must have been standing behind the door when our studies came to the subject of"... My mum was diagnosed with polymyalgia but I can see it was GCA as she had lumps in her scalp, was..." That's a new one on me. I have GCA and have small lumps on my scalp, but never heard of a relationship between the two things.

[Pegasu in reply to LIVEORDIEHEREIAM]

Not sure what you mean, but I am no expert on this. However, if you read about PMR, it says everywhere that PMR can lead to GCA. Maybe the more medically qualified on here can answer your question.

[LIVEORDIEHEREIAM in reply to Pegasu]

Sorry! I meant the scalp lumps and GCA. The lumps. I thought the lumps were about my sun-induced keratosis. Never thought it had to do with GCA.

[PMRpro Ambassador in reply to LIVEORDIEHEREIAM]

The scalp lumps CAN be due to poor blood supply to the scalp and that does happen in GCA.

[PMRpro Ambassador in reply to LIVEORDIEHEREIAM]

Which 2 things? PMR and GCA?

academic.oup.com/rheumatolo...

They are points on a spectrum of symptoms which can overlap. About 1 in 6 patients who initially present with PMR go on to develop signs and syptoms of GCA to some degree or another.

[Hidden in reply to Nextoneplease]

The pain is the thing I'll never forget. It spurs me on to sort this PMR thing out n do all good things to get rid of it n the pred. But I've never done anything as slow as getting off pred. "Slow" is not in my dictionary but with pred reduction its become a regular four letter word!

[SheffieldJane]

I wonder if the Pandemic is a factor?

[flygirl65 in reply to SheffieldJane]

I’ve wondered the exact same thing! It seems numbers are growing since. Another study to be done! 👍

[Pegasu in reply to SheffieldJane]

There has been a study done in America about links between the vaccine and PMR but nothing conclusive was found. Someone in US on the PMR Facebook group told me about it. I had wondered about having the booster vaccine now I have PMR. Seems between a rock and a hard place with that.

[PMRpro Ambassador in reply to Pegasu]

The vaccine is possibly the final straw that triggered PMR for someone. Both the flu and shingles vaccine can do it - but so can flu, shingles, Covid (there is little difference between PMR and Long Covid in many patients) - stress of all sorts, emotional/mental, physical, illness, injury, chemical or environmental stress.

PMR develops as the cumulation of a lifetime of insults to the immune system. Eventually one is the straw that breaks the camel's back and the immune system goes haywire, unable to identify the body as self and so it attacks it as it would a flu virus or a foreign body - leading to an autoimmune disorder.

It just so happens a very large number of people have been subjected to triggers all at once and so there is an apparent surge in cases. But you can't blame the vaccine in and of itself - it was just a further strain on that person's immune system. If it hadn't been the vaccine, it would have been the next thing that had a bash at the immune system - especially Covid. And that is why it is a good idea to continue to take as many precautions as you can - you may not be very ill because you have had the jabs, but you can still develop Long Covid and it can be far worse than a flare of PMR.

[Hidden in reply to SheffieldJane]

There is medical "suggestion" that PMR may be caused by a virus. It makes me wonder if Covid jabs caused mine even though the Covid jab isn't a "live" vax . The other medically suggested cause is stress. I had both at the time my PMR hit me.

[SheffieldJane in reply to Hidden]

I think the theory about the final insult to your system seems to fit. eg. A period of stress at work, family worries, something major goes wrong with the house and then you get Covid. Your body then turns on itself and you manifest one of the many autoimmune diseases ( if I had to, I would choose PMR to have, rather than the rest).

[PMRpro Ambassador in reply to Hidden]

The virus theory is quite an old one and to a great extent discounted - no common viral cause has been identified. That a virus can trigger PMR is reasonable - but it could also be a bacterial infection, other illness causing stress on the body or a whole range of events that depress the immune system - even a period of stress or extreme working patterns can be enough to affect the body and the immune system do it becomes deranged and unable to recognised body as self. Most people are familiar with the way going on holiday after a hard period at work or after retiral seems to trigger illness of all sorts and make you more likely to catch things.

Long Covid now is a parallel to ME/CFS from the 1970s - no-one ever worked out what caused ME though they think a virus and it is also labelled a post-viral fatigue syndrome. It is all most obvious now because there are so many cases of Covid and so far more of the post-viral events that hang on.

[PMRpro Ambassador]

i think that is what we would say on the whole - I have got told off in the past for my support of pred but used carefully and sensibly it works well to manage the symptoms and need not be the disaster so many doctors go on about. But they just hand out more tablets to deal with problems instead of looking at the reason. And polypharma causes problems of its own

[Greensleeves in reply to PMRpro]

I would hope nobody disagrees with you PMRpro .

I was going to ask this morning why the changes re : urgency to get off pred the last few years.

The last time I saw the rheumatologist he advised me to stay on 5mg as a maintenance dose .

I did for several years, before reducing to 3mg until I caught Covid pre vaccine.

I wouldn’t be here today if it wasn’t for the hospital administrating Dexamethasone and subsequently increasing the Pred dose .

Yes , it’s difficult to reduce with ongoing stress and caring , but for all the bad things, I personally feel safer with what I know.

How do people who’ve had transplants survive without. Or are they too given something else now to stop rejection.

I’ve been off , and reduced right down twice before, I’ll do it again eventually as I’m sure most of us will.

Thank you PMRpro for all of your help , knowledge and insight.

Thank you for your positive post FlyGirl.

Hugs and best wishes to you all.

[PMRpro Ambassador in reply to Greensleeves]

Several other drugs are used to reduce rejection risks post transplant - I think it may depend on what organ is involed.

"The major maintenance immunosuppressive agents currently used in various combination regimens are tacrolimus, cyclosporine, mycophenolate mofetil, azathioprine, everolimus, sirolimus, and glucocorticoids (steroids)."

pubmed.ncbi.nlm.nih.gov/318...

There are always new studies saying that something we thought was OK probably/possibly isn't. They seem to think that even the 5mg they thought was safe enough isn't as safe as they thought. But I wonder how much they take context into account. If you need 5mg of pred in PMR to manage the inflammation and keep someone mobile but it has a risk of lowering bone density - surely it must be offset against a lower dose that leaves a flare and the patient becomes immobile, also a risk for developing osteoporosis. Especially since not all patients do lose bone density with pred. Or is it as case of there is something else about pred that increases the fracture risk? I don't know ...

[MiloCollie]

Always good to hear good news stories. Thanks 😂

[MrsNails]

Occasionally l get a reminder of how awful l felt before Pred & you realise just how important Pred is…….

[Pegasu]

Thank you for the positive post. I agree that the mind is a powerful tool which is why I fight to stay in a positive frame of mind. I have tried using mind over matter but this pain is like nothing I have experienced before. It takes over your brain. I forget everything these days, I know its because of the pain, it just takes everything out of my head just trying to get through the day. Sitting on a heat pad helps my aching muscles and I do that several times a day advised by my physio. A good massage from her also helps. I really feel for anyone who is suffering with this dreadful illness but I suppose there are far worse things. Have a lovely weekend everyone whatever your limitations.

[Grannymiaow]

My mother had PMR around 1978, diagnosed by a friend who heard her tale of woe, and said, "I think you've got what I've got."She got him to write it down, and went in to her GP all guns blazing, having been fobbed off many times before.

(Ring any bells??!)

A couple of blood tests later, she was on Pred and pain free.

She took it for around two years, with no recurrence, although she did have a (negative) biopsy for GCA.

So when I had symptoms I was pretty sure it was PMR. September will be my 2 year pred birthday, and I'm now on 4.5/5mg, so I doubt I'll be off by September. Especially as I now have Covid. Oh Joy!

The moral of the tale is; PMR ain't new, and it is possible to get off the pred by 2 years.

Good luck flygirl!

[diana1998]

And more positive news... My cousin-in-law's sister lives in Turin. Started on 15mg pred 1 year ago and been on zero for 1 month. I was gobsmacked. They kept her in hospital for a week to diagnose her as she could hardly move. 15mg worked like a dream. Lucky lady... Green with Envy but happy for her. I was put on 30mg and often wonder if the journey would have been easier starting on 15mg 🤔

[PMRpro Ambassador in reply to diana1998]

Can't tell - I was started on 15 and still at 15 (after many downs and even more ups) after 13 years (plus 5 years pre-pred). I often wonder if a higher starting dose would have been better - the delay and repeated flares/relapses are to blame I think

[diana1998 in reply to PMRpro]

Guess we'll never know. It's a lottery isn't it.

[PMRpro Ambassador in reply to diana1998]

I get the impression that many people got through PMR better and maybe easier when they started with 30mg rather than 15mg. Timely diagnosis and treatment is crucial though