Interesting article I came across in a FB PMR group today:
"A significant proportion of those with the condition were on low-dose steroids for many years.
Those on lengthy treatment do experience a high rate of steroid-related complications, but except for cataracts, these comorbidities are no more common in PMR patients than in non-PMR patients."
AyJay— Thanks for the information. Is it possible for you to send a link to that article, or at least a citation? I’d love to read the details of that study, as would many other members of our awesome forum. Thanks for sharing. And thanks again to all the long-standing members who share their experience and expertise with the rest of us.
Thanks McD
I was going to ask the same thing 😉
MrsN
Is this the Eric Matteson study that PMRPro shared a few moons ago?
Yes it is…2017 published.
Here's the link: practicalpainmanagement.com...
Hi Ay-Jay I think everyone should read this it would allay many fears and certainly has mine. I think that study has been shared here before too as I’ve seen it …and most of the good stuff comes from this forum 😜Thanks, it is so good to reshare and remind people that Pred is ok and does its job
Reason Pred+Sunshine causes existing cataracts to grow.
When diagnosed with either PMR or especially GCA a visit to an optician who can tell you:
a) whether you have cataracts, the start of them, or none.
b) if you wear specs then they should be changed to re-actolite rapide.
c) if you do not wear specs than a good pair of sunglasses used whenever you are outside in sunshine.
Those without existing cataracts need protection.
I was diagnosed with GCA and my optician immediately changed my spectacles to re-actolite rapide as I had the beginnings of cataracts............ they are still the same size and I had GCA for 5 years.
BTW, my sight has changed over the past 12 years and I have had 3 pairs of new specs all re-actolite rapide.
Interesting. I am just about to book my optician appointment. I had no sign of cataracts lat time - should I still request re-actolites if results are the same? Glasses are so expensive! (However, good health is priceless).
Using ordinary sunglasses when out is also very effective. That is all I have done - prescription ones for me. Reactolites are a pain for me - I live in a place where every road out of it has loads of tunnels!!!
Steroids blamed today in national newspaper on awakening TB....a reader with PMR has a cough as well....they told her to get checked out because steroids can wake TB up.....especially if losing weight and sweats as well....
Wonder where they came up with that idea? Especially in the UK. I could imagine it in the USA where TB is still very common and probably where my husband caught it.
It isn't that recent but pubmed.ncbi.nlm.nih.gov/918... says
"Although corticosteroids are known to be immunosuppressive, there have been no studies to show that use of corticosteroids increases the risk of developing new tuberculosis or reactivating old tuberculosis. In fact, corticosteroids are recommended for the treatment of several forms of tuberculosis, such as pleural tuberculosis, genitourinary tuberculosis, and tuberculous meningitis. Clinicians should still be alert for tuberculosis appearing in immunocompromised patients as a disseminated infection or for tuberculosis that is atypical in appearance."
It IS a risk with leflunomide and tocilizumab though.
It's Dr A Scurr, in The Mail I think...hope you access it...he starts saying what we know, then states that.......he does say reactivation of TB.....
Oh HIM - he's said some strange things before! He says "PMR was first described in the Fifties" - 1888 actually!!! - that's in the 2015 comment he did about PMR. But I think it's a bit of a stretch going from query reflux to query TB ...
I have quoted this research repeatedly for the last 3 years since it was first published!
practicalpainmanagement.com...
is a link to the article about it and at the bottom of the article is a link to the full research paper.
It's good to have this kind of research posted on a regular basis as there are a constant stream of new members to this excellent forum who will not have seen it. Thank you for all you do, I learn something new about my condition every week!!
That is why MrsNails, DorsetLady and I spent a lot of time creating the FAQs - and that will be a work in progress. If existing members signpost new people to the FAQs they will find all this sort of stuff collected there too.
Hi all just reading all your replies and advice and links and wanted to say how grateful I am to have found you experts. And I had to laugh when various mention doctors - in my case I'm lucky if I can actually speak to mine - so I'm glad I've got you all 😁😘😘
Mine are good to talk to too - but they are a rare breed!!
My doctor rang me about an hour ago and you are definitely the lucky one as he isn't good to talk too!! Wasn't impressed I'd put myself back up to 12.5mg (after my 3 day attempt at reducing to 10mg), wasn't interested in me tapering, didn't acknowledge possibility that stress was causing any problems and basically said need to do my bloods again to see what levels are etc. BLAH BLAH BLAH!! And then go from there! I could be here all night moaning. But I won't 🤣🤣
Hey ho 😁
No chance of another one who is interested in the patient rather than an incorrect textbook?
Unfortunately only one doctor and he's a locum!! But am thinking of moving as can't be doing with the issue getting appointments and also was not impressed with the call I had yesterday!!!As said I could elaborate about it but probably not suitable for this forum 🤣🤣
Oh I don't know - asterisks are useful and I bet there are plenty of others who can sympathise 
Yes I think you're probably right as reading the posts there are many that I can see have same problems with their docs!!I got so annoyed yesterday with the surgery and the way appointments are dealt (or lack of) with I felt like saying to him its you that's making me worse 🤣🤣
Let's see the response I get when I call up to check if he's done repeat prescription and my blood test form - just have feeling he might have forgot the repeat prescription!!!
It would be nice if these findings had been confirm by further studies. We continue to hear confirmation of all the negative side effects on a regular basis. (Sigh)
The durations of PMR is the most important thing for me - and that has been backed up by a couple of studies in other parts of the world.
Great stuff. Keep up the good work, all of you. It is greatly appreciated.
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