Articles on Practical Pain Management website

I thought people might be interested to read these articles on the US site Practical pain management (PPM)

practicalpainmanagement.com...

(sorry that hasnt come as a proper link, but I have copied and pasted it into Google and it works)

They did a study on 359 with PMR and had controls, over a 14 year period, and basically found that the people with PMR were no more likely than the controls to develop diabetes, osteoporosis etc.

Also gave the times that people were on steroids: the median time to taper below 5 mg a day for 6 months was 1.44 years, and the median time to permanent discontinuation was 5.95 years. So not quite what the doctors seem to try and tell you; as my Rheumatology Registrar said "oh you wont be on Prednisolone for more than 2 years, so you wont need a bone density scan"

Also a link, at the bottom of the article to "Latest advances in the diagnosis and Treatment of PMA" which is in my "things to read file".

Somewhere on the site they link to PMRGCA uk site too

The first article has strengthened my resolve not to take Alendronic Acid, which my dentist confirmed this week, does a lot of damage to the teeth. He reckoned, if I started on it, he would have to take 2 old roots out, as it becomes difficult to work on teeth once people start on Alendronic Acid, and hard if teeth break etc. So I will stick to the prunes, that I posted about 2 articles about.

Bridget

[PMRpro Ambassador]

So pleased to see others are finding this - I have been citing this for a while, either the same link or this one

medpagetoday.com/rheumatolo...

where the article has slightly different emphases.

On the forums a few of us have been saying for the last 7 or 8 years that pred isn't as bad as it is painted and that PMR lasts a darn sight longer than 2 years! I'm rather chuffed at being vindicated at last!

Eric Matteson is a world expert in PMR at the Mayo Clinic - and I believe is writing an article for the NE support group newsletter.

Since it is impossible to know at the outset how long you will have PMR it is still important to have a dexascan - you may already be osteoporitic and I believe that is part of the reason pred gets the blame, the patients already had low bone density BEFORE they were put on pred.

[markbenjamin57 in reply to PMRpro]

Hear Hear, PMRpro

On the topic of possible Pred-linked Osteoporosis / Osteopenia (and GP standard recommendations to take AA in conjunction with Preds), and in case this is relevant to anyone here:

I remember, at the onset of my PMR Dx / starting on Preds in 2015, my soon-to-retire GP telling me quite bluntly to (q.) "Take the Alendronic Acid tablets as well, since the steroids cause thinning of the skin" (in hindsight - 'skin'..., oh really?!). I didn't - my intuition said NO!

Nearly 3 years later, his young successor gave me a dressing-down when I admitted to not having taken the AA based on my own assessment of the risks / benefits, and given a Nil history of injuries or fractures despite explaining that I had bashed and clanged around on the Rugby field and in the Squash court for 30 years, done a lot of heavy physical work, etc etc. Always was good on my feet, never a trip or slip.

She curtly replied (q): "So, Mr Benjamin, you are age 60 now. What if you fall over and break your hip at age 70? How would THAT feel?!" On my suggestion, she (reluctantly) agreed to refer me for a DXA scan. Result? 'Mild Osteopenia, between 3 and 7% risk of hip / femoral fracture in the next 10 years'. Recommendations: Watch Lifestyle and Diet only - no other Action.

My (amateur) Conclusion(s)?

As you, PMRpro, and a few others suggest, DXA scans can only be interpreted meaningfully in relation to previous or on-going reference points for changing BMD, and in a Patient's individual context. By that, I mean that some of us might have always been on the lower side of BMD scale / slightly Osteopenic - but with relatively low risk factors for future bone injuries, all considered. And (if I understand correctly..?) BMD is likely to reduce naturally in the ageing process for both Females and Males.

Taking AA seems to be the standard, recommended advice for PMR patients on Steroids: but from what I've learned here about the Pros and Cons of AA, prescribing it is often very-much a 'One Size Fits All' approach by many GPs - and about professionally Managing Contingencies too, maybe? And not to mention other motivators for some Medics to prescribe AA...

Mmmm... better stop here. It's a controversial subject, I know

MB

[Hindags in reply to PMRpro]

I wish Matteson et al had also measured things like Pred's on hair, muscle, skin and tendon and bursa. These may not be as serious issues as those things his group did study, but they are certainly affect quality of life and can leave enduring problems.

But maybe I've forgotten which of these things are due to PMR and which to Pred.

Can I plead Brain Fog?

[PMRpro Ambassador in reply to Hindags]

I suspect they aren't included because they weren't included on the patient notes - this was a retrospective study using patient histories.

[Insight329 in reply to PMRpro]

Thank you, PMRpro, for posting the above link. As you might remember, I shared the original Matteson report with my doctor and was informed that he began using it in his practice. (Kuddos again to you for teaching our docs.) Seeing this here reminds me that I want to share this report with him as a follow-up to the original.

[Hidden in reply to Insight329]

Hi - have you got a link to the original Matteson study, I seem to find lots of people quoting the study but cant locate the original paper, or perhaps PMRpro might have it?

[PMRpro Ambassador in reply to Hidden]

The link to the original is on at least one of the articles I think.

Yes - there is a link on both of them to the source. But since it is Wiley online library you will have to pay for it!

The articles are a much expanded version of the abstract and between them do cover most of it.

[Hidden in reply to PMRpro]

Thanks for the link, more detailed and perhaps more accurate conclusions, but a comfort to think that we aren't quite at as much risk of complications, from the steroids, that the medics might have us think.

[SheffieldJane]

Thanks for posting this and I heartily agree with all your conclusions.