I sometimes glance at the PMR Facebook group and cannot believe what I’ve just read and it’s a good reminder to use this forum for advice and information.
The Facebook poster has just stopped taking 15 mg pred having been on it a year without any tapering.
I’m sure DL and PMRpro (and many others) will confirm the risk of doing this but I just wanted to highlight the issue for any newbies here.
I know - I do hope they are OK! Hope no-one else follows in their footsteps!
Absolutely.....and as herself says, hope person involved is okay.
Oh my goodness! But what about withdrawal? What about the massive shock to the adrenals? That's incredibly worrying on so many levels. I too hope they're ok. Wow!
It even says on the packet insert not to stop suddenly but it is surprisingly not very prominent, not even in bold type on mine.
I've been a a member of a couple of FB groups for PMR and have steadily left them all because of the shocking advice being doled out.
I hope this person is ok.
I am relieved to say I don't see that. I am speechless.
I use FB to keep in touch with friends and family and I did join this group out of curiosity but I only lasted one day; reading their posts was beyond stressful.
I love the posts “My mom went blind overnight. What should I do?” Yikes!!
Exactly, who needs A&E when you can get medical help on FB. Also, there are a lot of peddlers of fake overnight cures which is almost more stressful.
Yes. It is confounding. I always post Go to HealthUnlocked.
It really is frightening but consider this ! Few months ago during one of my trips to A&E I had a rather nice doctor looking after me,obviously a youngster but very very pro'and seemed to me ideal.Much later during a discussion about what he intended doing to help me he told me to stop taking Pred' ( I was on 20mg at the time,) I immediately asked him if he realised what that could do to me and he was shocked when I told him. He produced a hand size black book and read up on Pred' after which he thanked me quite profusely.
I came away absolutely stunned but the point being that without this forum and such as DL/PMRpro and many others I simply would not have known the severity of doing what he instructed.
Completely agree about Facebook group. If I had found them before I found this Forum who knows how much disinformation I would be unlearning! I blocked them last night because it just interferes - I want to try to help but many are just not really wanting advice or others experience.
Also many seem way too young. I know it can strike at any age but on Facebook it is seen by many folk who self-diagnose or convince a doctor they might have PMR. Lots of fad “diseases” through the years and it makes it harder for those actually trying to deal with PMR to see so many trying to find “natural” instant cures.
Yes I so agree. I get drawn into FB's murky depths at 4:00 in the morning when I can't sleep I often want to scream and ask why they think it's PMR. I've now found some chicken keeping sites that are distracting me in a similar way. Perhaps I should go back to politics!
Pred brain
Flare 6 weeks after stopping Pred - Help!
? increase Pred
Stopping tramadol
tapering pred
