Lifetime

[KCRoyals]

Wonder if there are any on here who believe they will spend a lifetime on Prednisolone. Been on it for 16 years and am now on 2mg;1mg on alternate days. Never seems to alter each tome I see my GP or Rheumy. Just wonder if I should accept it.

[PMRpro Ambassador]

I almost certainly will be - and unlikely that I will achieve that sort of dose either. It has taken Actemra to get to 6mg per day, After 14 years on pred I had had to go up to nearly 20 to be able to function. Even 6mg can be a struggle - after about a week I have bicep and forearm pain. I'm very tired, just would like to sleep but can't!

[Longtimer]

Yes, I’m at 5mg after nearly 13 years. Would be happy at 2 or 3 mg. Have too many struggles and new meds to try so no chance of that right now.

[fmkkm]

Hi KC, I have been taking prednisone now 8 years. I am at 3.5 mg after many attempts to lower it. I tried so hard in the last 4 months to get to 3 mg only to land a giant flare with notes of PMR. I squashed that with a week of extra and I am back to 3.5. Bottom line, my GCA is in remission at 3.5 mg prednisone. I feel pretty darn good at 3.5 most days so I’m staying here.

[Ceathrua498]

I've been stuck on 5mg for the last 5 years and looks like it's not going to change anytime soon. I don't seem to be able to go any lower. My Rheumy is quite happy for me to stay on it. The alternative is having a flare and increasing the dose and being back to square one and trying to reduce again

[Gaz227]

I’ve been stuck on 4.5mg for a couple of years now , been on it 8 years in total , any lower and it all just falls apart on MTX injection 12,5mg also once a week. I will try again but not confident I will sucseed, Rheumy doesn’t seem worried I only see him once a year for a 5 minutes , I just self medicate now . Good luck for the future. 👍🤞

[KCRoyals]

Thx for the great replies. My main concern is how being on Pred for such a long time will affect general health.

[PMRpro Ambassador in reply to KCRoyals]

I've been on more pred than that for a long time and I don't think it has affected my general health any more than simply getting older AND having longterm PMR. And what happens as you age is an unknown that can change in an instant sometimes however fit you were previously.

[S4ndy]

My Rheumatologist thinks I will always need a low dose of steroid. Been on 5mg for about 4 years now with no flares. Prior to that I was up and down like Tower Bridge 😂

[Hulotsholiday]

I’ve been on pred since 2017. Managed down to zero once and everything returned within weeks, so had to start again. I was down to 5mg but had a huge flare after a covid booster and currently back to 15. In think it’s a long and often bumpy journey. I accepted that steroids are going to be part of my life, probably forever. I don’t like it, but I have no quality of life unless PMR symptoms are controlled. And only steroids will do that. I’m not entirely convinced that they’re doing as much harm as is suggested. Had cataracts, sorted with surgery. No stomach issues, don’t know about bones and weight is ok. GP is content and rheumy had already said I was likely to need a maintenance dose for life. I’d be happy to get to 5mg and stay there. I’ve stopped worrying about it. No point.

[KCRoyals]

As usual, wonderful and relevant answers. Thanks.

[MiniSpec]

Been on Pred for over 13 years and currently on 3mg per day. Last year I tried to reduce to 2mg over a 7 week period, but ended up having a nasty flare, so now sticking at 3mg for the time being.

Like you I suspect I'll be taking these things on the day I die, so I don't worry about it. For me the only downside is the rather loud Tinnitus that started the day after I took my first dose of Pred, and which has continued every single waking moment since. However, I ignore it most of the time, so I don't get obsessed by it, but simply accept it as background white noise.

Other than that I don't seem to suffer any side effects from Pred, and my GP told me many years ago that once you get below about 7mg per day, they don't worry about bone density being compromised. So my experience tells me that quality of life is more important than worrying about something that doesn't need worrying about.

Furthermore, at my age (73), I don't pay for the prescriptions, so it's not as if it's costing me anything, although of course there is always the argument that having paid NI contributions for over 50 years during my working life, I've prepaid for any meds I get now anyway.

Oh, just one more thing. Having to take my Pred each morning gives me a reason to get up each day, without which I'd probably get too lazy to even look after myself. So it's doing some good in that regard anyway.

[AtopicGuy]

I'm in my early 60s and have been on and off prednisolone for the last 4 years. If I thought I was on steroids for the rest of my life, I'd be demanding other immunosuppressants. If I'd reached 80, and I still felt some benefit, I'd happily take whatever I was offered!

[PMRpro Ambassador in reply to AtopicGuy]

" If I thought I was on steroids for the rest of my life, I'd be demanding other immunosuppressants"

Which is all very well if the disorder you have responds to other immunosuppressants and you live somewhere that will pay for them. Unfortunately, with PMR in the UK it is pred or nothing. There are a couple of drugs that work reliably - but not approved and not funded.

[AtopicGuy in reply to PMRpro]

If the PMR presentation is atypical, then why should doctors assume the individual's response to immunosuppressants is going to be typical? The only way to find out whether cheap, old, generic drugs work is to try them. GPs are happy to slam us on anti-depressants at the drop of a hat: I must have tried half-a-dozen by now. Duloxetine was the latest, when they tried to dump me in the Fibromyalgia bin. That didn't work, either. I'd happily try methotrexate, cyclosporine or azathioprine. Some neurological diseases, such as myasthenia gravis (MG) and chronic inflammatory demyelinating polyneuropathy (CIDP) respond well to prednisolone, but require much higher doses than typical PMR/GCA to bring about remission. Those patients have little choice but to go on steroid-sparing immunosuppressants, like the ones I listed above. Indeed, I wonder whether what manifests itself as atypical PMR might, in some cases, actually be atypical, sub-clinical presentations of these other neurological conditions. I'm happy to be a guinea pig in that sense, as I'm now seeing a neurologist at the request of my private rheumatologist (who discovered I have 0.12 nmol/l of anti-AChR antibodies). I haven't found an epidemiological study, yet, that looked into that possibility.

[PMRpro Ambassador in reply to AtopicGuy]

If the symptoms respond better to other drugs besides pred, then one of the criteria for it being the PMR we talk about here is not fulfilled. PMR is not the disease, it is the name given to the set of symptoms and there are several possible underlying causes. There are indeed many possible causes that may well respond better to something else - but then it is not PMR, atypical or anything else. Atypical doesn't relate to the underlying CAUSE, atypical is used for the constellation of symptoms or presentation. If it responds better to something else and doesn't respond well to pred - it isn't PMR as we mean in the first place, it is something else. And that isn't me saying that, it is one of the top PMR experts in the world.

[AtopicGuy in reply to PMRpro]

Please can I have a link to reference that, as none of the online guides or epidemiological studies I have read (which are admittedly from 3 to 30 years old) have characterised PMR in that way. The one thing that's certain is that PMR is autoimmune, because no pathogen has been identified, and it responds quickly to about 15mg of prednisolone, but may take years to resolve fully, if at all; and there's a moderately high risk of turning into GCA if left untreated.

Typical PMR seems to be a well-characterised disease: median age about 75, with raised CRP and/or ESR; symptoms respond quickly to about 15mg of prednisolone, but may take years to resolve fully, if at all; moderately high risk of turning into GCA if left untreated. Between 80 and 95% of PMR patients meet these criteria.

It's the many outliers that are the issue here: the atypical cases, which as said to number up to 20%, but the studies say less than 5%; those with normal inflammatory markers and/or younger than 50 at onset. Some may never even achieve a diagnosis of PMR, depending on their doctor(s).

I agree with you that PMR in general seems more like a collection of symptoms (a syndrome) than a disease. Something different seems to be going on with those outliers, and trying to lump them in with the rest isn't working.

[PMRpro Ambassador in reply to AtopicGuy]

The average age at diagnosis is 52 - that isn't the same as median and incidence increases with age.

It isn't actually certain it is autoimmune - since no antibody has been identified. But there is a genetic component even if it isn't hereditary.

ccjm.org/content/87/9/549

is a useful read.

I can't give you a link of the top of my head for long time established aspects of diagnosis and management I'm afraid but the speedy and marked response to moderate doses of corticosteroids has been regarded as confirmatory of PMR for years. Though this may serve the purpose:

"In PMR, a clinical response of 70% is expected at one week, with nor- malisation of laboratory inflammatory markers at four weeks. An atypical clinical presentation or failure to respond to steroid should prompt the consideration of alternative pathology, and specialist referral.

Diagnosis and management of polymyalgia rheumatica"

Polymyalgia rheumatica concise guideline (1),pdf

I haven't been able to find a link as it is a download - unless this works:

rcplondon.ac.uk/guidelines-...

I assure you, it takes a lot of years and working alongside experts to acquire this info for a non-specialist medic. You have a bit to go,

[AtopicGuy in reply to PMRpro]

"Polymyalgia rheumatica is a relatively common inflammatory disease that occurs in patients over the age of 50. On average, patients are over 70 years at disease onset."

"It is almost never seen in people under the age of 50".

ncbi.nlm.nih.gov/pmc/articl...

[PMRpro Ambassador in reply to AtopicGuy]

Almost never doesn't mean the same as never - and that is another false ssumption. Prof Mackie in Leeds has a number of patients in their 40s.

[AtopicGuy in reply to PMRpro]

Of course. I've had PMR-like symptoms as long as I can remember, and I found a doctor online who claimed to have a PMR patient 28 years-old! However, these outliers are rare, which means it is mathematically impossible for "the average age at diagnosis" to be "52". And that's regardless of whether the average is the mean, the median, the mode, or any other definition.

[PMRpro Ambassador in reply to AtopicGuy]

I said 72 as the average age. The youngest patient with PMR in the literature is a 24 year old athlete. However, in probably 95% of cases it burns out over time and if you have had lifetime symptoms it comes under the classification of a PMR-type myalgia and not necessarily the PMR we dicuss here. It is extremely unlikely that you will find many doctors who would classify your syndrome as PMR as discussed here.

[PMRpro Ambassador in reply to PMRpro]

ncbi.nlm.nih.gov/pmc/articl...

also mentions response to pred as a diagnostic factor.

[AtopicGuy in reply to PMRpro]

Indeed. Seeing how patients respond to drugs is a powerful form of diagnosis. Unfortunately, doctors are reluctant to put people on steroids unless all the tests point that way first. That's why it's likely that many atypical cases go untreated, taking a terrible toll on quality of life.

[tangocharlie]

Me probably as unlikely after 12 years my adrenals will spring to life agaiin even if the PMR ever goes away. But I don't think steroids are the big evil they're made out to be. Nothing wrong with my bones, blood pressure, no sign of any heart disease. Weight and blood sugars under control if I eat low carb. Thin skin is a bit of a problem but that's an age thing. I don't seem to be prone to infections, in fact I rarely get colds or anything. I got Covid but it wasn't a problem. Currently on 10mg where I think I will be for a while, plus Hydroxychloraquine which seems to have helped me reduce from 25 a year ago, but no way of knowing. Ideally I'd like to get a bit lower than 10 but que sera, sera

[Sharitone]

I've been told to expect not to get lower than 3mg - not quite there yet, decreasing 0.25 per month. And that's with TCZ.

[KCRoyals]

Ain't this PMR a grey area. Wish they would find a cure for it and we would all be happy.😍. Also a cure for Tinnitus would be appreciated. Can remember watching an early 60's US cancer documentary when the doctor stated that with all the funds going into cancer research "in 10 years time cancer will be a thing of the past". Think he's a window cleaner now.