New study...No Special Risks Seen with Long-Term Steroids in Polymyalgia Rheumatica............One exception: cataracts

medpagetoday.com/rheumatolo...

interesting article...very new....study on prednisone.

[CT-5012]

Hi dianelee,

Thank you for the link, very reassuring.

[HeronNS]

It's an odd article. It talks about relapse rates being high - like relapsing two months after starting therapy. You wouldn't even be well enough to have a "relapse" that early on. "Disease flares were common, the authors noted. The relapse rate was 31.5 per 100 person-years, with the highest relapse rate occurring within the first 2 months of diagnosis (133.4 relapses per 100 person-years, 95% CI 70.5-252.3). Relapse rates declined progressively over time, reaching 29.9 per 100 person-years (95% CI 16.2-55.3) in years 2 to 3."

[nuigini in reply to HeronNS]

Heron, I had a relapse in the first two months after dropping from 40 mg to 25 mg over that period on the advice of specialist physician!

[HeronNS in reply to nuigini]

Nuigini, What i was trying to say was that you couldn't relapse unless you had been well. At two months a person would still be sick, and only in "remission" because of medication. Maybe I'm not understanding the meaning of the word relapse?

[PMRpro Ambassador in reply to HeronNS]

Suspect it isn't you that doesn't understand the meaning!

[HeronNS in reply to PMRpro]

I suspect the writers of the article didn't make the distinction, which I found curious, as though they have no idea about how recovery actually proceeds in PMR/GCA.

[PMRpro Ambassador in reply to HeronNS]

Which is hardly surprising - I haven't met a doctor yet who does REALLY get it until it is explained in great detail!

[HeronNS in reply to PMRpro]

I think this disconnect between what the medical establishment expects and the actual progress of this idiosyncratic disease helps partly to explain why we are the most active participants in the health forums!

[nuigini in reply to HeronNS]

You're right Heron. I was confusing 'flare' and 'relapse'.

[PMRpro Ambassador in reply to nuigini]

But so do doctors - they use the words differently from how many patients do. That isn't the only term. They don't get how we use pain and stiffness for example.

[nuigini in reply to PMRpro]

You're so right. I love the way they consistently say one of the symptoms is "morning stiffness lasting more than 30 minutes". With full blown PMR I was in freaking pain!

[HeronNS in reply to nuigini]

I know! "Morning stiffness" sounds so negligible.... And I sure wouldn't limit it to mornings. More like, every time you stop moving for more than two minutes!

[piglette in reply to nuigini]

I totally agree. My rheumie said, do you have stiffness in the morning, then replied for me, of course you do. I thought stiffness does not have a look in, I am in extreme pain!!

[PMRpro Ambassador in reply to nuigini]

Actually, this is something we have told them repeatedly - and every time they open their eyes really wide and express surprise. It isn't the same for everybody and many people don't register that they are any stiffer in the morning than any other time - if anything they notice the morning PAIN more. But doctors seem incapable of getting the difference between limitation due to pain and limitation due to stiffness. For me they were definitely two different components - but I'm not sure that is the case for everyone. The same applies to weakness.

If you read this closely you'll see there ARE doctors who get it - and this paper should be compulsory reading for all doctors dealing with PMR patients

eprints.whiterose.ac.uk/852...

I gather she is working on a follow-up paper...

[SheffieldJane]

Thanks for sharing this interesting article dianalee. Cheering isn't?

[suzy1959]

I find it interesting that half the patients studied were still on steroids for over 10 years! I didn't find the study that reassuring as they were only comparing long term steroid use amongst PMR sufferers and others on long term steroids. There were still significant risks,just no worse than for others taking steroids. However, I was a bit heartened that the risk of fracture was not that high. We must be grateful for small mercies!!

[bunnymom]

I am 61 and on Monday I am having cataract surgery.i believe it will greatly improve the quality of my life and I have seen so many Drs this year my deductible is paid so I get both eyes done for free! Can't wait to be able to see. Had pmr a year and a half. Thanks for the post.

[GOOD_GRIEF in reply to bunnymom]

You will be amazed at the difference just a few hours afterward. The entire process from inception to rev overt is virtually pain free - nothing more than a couple of mosquito bites. Best of all, you'll see the stars again!

[Jackoh]

Don't know what I fully think about the article but I'll take hold of the positive bits!

[Hidden in reply to Jackoh]

LOL...I agree. The article is a summary of the study, and not a particularly clear one. I can't access anything except the abstract on the actual study. I think you have a good strategy!! There's some positive info...or at least not negative...or at least not more negative.

[PMRpro Ambassador]

Hallelujah - look at those figures for the duration of pred management in PMR!!!! 42% of patients still on pred after 10 years!!!! 50% off in 5 years (i.e. 50% still require pred at 5 years) - seems about right to me but the 42% long term pred patients does seem high.

The relapses they are on about is what we call flares due to reducing too fast - and given what we know about how most US rheumies go about it it isn't surprising.

This may not be really particularly meaningful re long term side effects of pred but does show the duration . But I wonder why PMR leads to more cataracts? I wish - but after 8 years I have none in sight (pun intentional...)

[30048]

Thank you for that article. Still cannot understand why doctors are so paranoid about low dosage amounts.

[Dobermanlover]

I have been on steroids for 2 years now and have just had my second cataract operation. Vision in my right eye became blurred, just thought I needed an eye wash. Went to local pharmacist, who is a godsend, and he told me to go to the opticians. To cut a long story short, got referred very quickly to the eye hospital, who told me to my astonishment that both cataracts needed doing. First one was done a week later (cancellation option taken up), and my second one 2 months after that. I now have perfect vision (long sight) and I suppose have steroids to thank for that!

[Hidden]

Just a little add on...I posted the article I found but it is not the actual Journal abstract/paper produced by the researchers. The guy who wrote this article is just a journalist and not a medical person, so paraphrased and took license as he saw fit.

I will say that in my own obsessive research on these autoimmune papers and publications, I am becoming more and more cynical about their content. I spend a lot more time looking at who wrote them and how it is funded (follow the money). Sometimes it seems that they are carefully crafted articles where a researcher or team become "spin doctors" to push their own agenda...either because they are fixated on their own theories and outcomes, or because the big Pharma companies funding their research want the spin to favor their hot new drugs.

My early morning rant. LOL. It's 5:45 a.m. here. Maybe I just need more coffee.

[PMRpro Ambassador in reply to Hidden]

I had a look at the abstract - and I don't think there is an agenda to push with the figures. It was a retrospective study and the times patients are on pred seems pretty reasonable judging from experience and other papers. It is a team from the Mayo and funding seems OK too: "This study was made possible using the resources of the Rochester Epidemiology Project, which is supported by the National Institute on Aging of the National Institutes of Health."

Have another coffee

[Hidden in reply to PMRpro]

Thank you for the reality check PMRpro. LOL. Got my next cup of coffee. Also, I was not connecting that rant to this particular article. I should have started that rant elsewhere.

[PMRpro Ambassador in reply to Hidden]

I wouldn't - you might get me on MY high horse about that!!!!!!!