As a subscriber to this forum over the past six years and having benefited hugely from the wisdom on this site, can I just ask whether “off topic” responses should be posted as a separate enquiry or even maybe moved to the “chat” section?
Recently some of the threads have become much longer and take a lot of reading even if not a response to the original enquiry. I do wonder whether new members find these lengthy off topic discussions rather alarming.
If they go as separate threads, they are likely to be deleted as off piste. Very few people read entire threads - that is very obvious. But if you can think of a way to stop threads developing conversations - do tell us because we've been at this a long time, have tried a lot of things and haven't succeeded yet. You can't use Chat because they are private and that excludes others joining in.
And many people say how they enjoy the short sorties of levity - it makes them feel more normal.
You may have noticed some threads being longer recently - believe me, some have grown like Topsy for years. It usually means it is a topic that strikes a chord.
Thanks for explaining that the CHAT option on the forum is exclusive to the two parties involved. I didn’t realise that. So going off at a bit of a tangent is to be expected in some posts, it just makes for such a lot of reading looking for the replies to the original post. I don’t know how you do it, but I’m glad you do, because this forum has supported me for the past six years and I would be alone and lost without it.
No - not just 2 but it is limited to 10 I think. It is horrendous to work out who is who though since they changed it - DL, Fran and I have ongoing conversations and it can be quite confusing. And people can't spontaneously join in.
We do it reasonably easily because we follow/save every single post and get an email notification of every reply into our inboxes. Means dozens of emails a day and an utter pain when HU is messing about. But it works OK.
The likelihood is that DL, I or Snazzy will reply with a straightforward explanation in the first 10 replies. I don't think anyone gets left adrift for long and one person is pnly dealing with their own thread which isn't overwhelming I'd have thought.
Hi PMRPro! I agree, the general chitchat definitely helps me to feel more normal and part of this world. Thank you. You do a marvellous job.
and me - I am a big reader of threads even though I do not contribute much. Thank you everyone x
True that some of the threads become longer and sometimes go off piste….but that, in my mind, makes them more like a F2F conversation. How often do we start a conversation with friends or family, and wander into other subjects?
Unless you come to them a few hours, days or weeks after they are posted, are the originator, specifically replied to or follow every post [like PMRpro and I do] then most people don’t read them from start to finish.
Chat has its limitations -only a limited number of participants- and is even more unwieldy to follow if you have more than 2 or 3 people involved.
Agree that some new patients may just want a quick and straightforward response to a specific query they have, and hopefully they get that … but many have also said how much they learn from others, very often from a throw away remark that may not on the face of it be directly related to initial question..
Thankyou Dorset Lady for that reply. I do try to read every post in the morning but I honestly don’t know how you and PMRPro manage to respond to everything, you are our hero’s.
Exactly! Quite a few times, the little side comments have either given me info that I found useful or made me look at something differently.
Oh no, don;t cut the digressions, they're the best bits! No, the best bits are the well researched , well founded, solid information, but the little glimpses into lives and personalities are fascinating. Thanks for everything!
We won’t….. we all need a bit of distraction from the serious bits….
I agree. It makes everyone more real if that makes sense and you get a sense of who they are which helps connect. I love the diversions.
Yes, I agree with Toolie2 -- I haven't found the digressions too long -- we can always skim at that point if we want to. The solid information is saving my sanity at the moment -- I need things to go in through my head first off, but the little glimpses in to lives and personalities are fun and make it more like a friendship, which feels good -- we can feel pretty alone dealing with a condition like this. And I'm all for some humor, too!
And I'm all for some humor, too!
In my mind [and life] I’ve found humour to be essential… although I do appreciate it’s difficult to find some days…
My husband had a fabulous sense of humor and his last words were an attempt at humor. My last words to him were a lie -- it was election day 2000 and I assured him that the candidate he wanted to win had in fact won. I just couldn't let him die thinking otherwise!
Mine too (quite dark at times -military man and down to earth) - and pleased to say children and grandchildren have inherited both our sense of humour.. although their other halves may not always fully appreciate it.
Sorry Zebedee. I think I have been a culprit on a couple of threads lately - guiltily aware and expecting to be checked by Fran. Some deviations can be looking after the mind - equally important in my view. They can also be excluding which is not good. Will try harder. X.
personally, I think the deviations are good…may raise a smile in those who are depressed, ir lonely, living in an isolated position. I read them all each morning, the only thing I’d say (say, not criticise) is that it seems like a general surgery some days…people posting on other medical matters, not connected, but in England (& possibly Canada from comments) this may be because access to a Doctor isn’t as easy right now!! S x PS I meant to say that I think asking questions on other medical issues is unfair on those who reply! Think before post & check the FAQs, too!
I guess I was guilty of that myself with my post about post menopausal dryness but I hoped the ladies of a certain age on this forum would be able to offer information. Like many here I think of this group as friends and confidants, and the banter is very refreshing, but I have noticed a few very long threads recently which took the discussion miles away from the topic which I sometimes wonder is a little bit disrespectful to the member who posted.
Dryness is also a problem in a/i disorders - so accompanies PMR too and therefore is not irrelevant.
If a reply goes too far off piste or is in anyway disrespectful it gets reported.. and appropriate action taken.
Crikey, what a job that is for someone!
Well anyone can report something they think is out of order .. fortunately it doesn’t happen very often.
Overall we are very respectful group.
No no no…I didn’t mean anybody to feel guilty!! I just meant we should be careful…we use of much of DL & PMR Pro’s time on GCA & PMR! Lots of things we all suffer can be side effects of steroids, or an allied problem in a/i disorders…just mean we should be mindful of it, that’s all. S xx
No body should feel guilty -and I know that’s not what you implied.
Speaking for myself -and think PMRpro feels the same - I’m happy to spend certain times during the day on the forum.
As I’ve said before, it’s my way of returning the help the charity/forum gave me early days. The charity has no local charity shops to offer my services …so I do this instead..and I enjoy it.
Due to my issues prior to getting diagnosed, I most certainly don’t want others to suffer same fate… so that along with my recovery and good life since being in remission are good reasons to hang around
If it ever comes to point when I don’t enjoy it anymore or think I have nothing to add, I shall disappear
Thanks…no it wasn’t at all!! And I know you love it, that comes through. Just would like to see people use the FAQ or the related posts bit sometimes! I’m happy, it’s great for me, & my thanks to you! S x
So would we -it’s why a lot of work was put into creating them.., but as the saying goes - “you can lead a horse to water, but … “
Same here - but after all this time I can judge very quickly if I need to spend time on a reply. I do always go to the thread - sometimes I only get a notification of the last of several replies so do need to check was that final reply was responding to. And I don't always reply if there is already what I would say from someone else.
I love reading the warm, caring and funny bits. I feel amongst friends here and do get help from many of the comments.
Heck, don’t change a thing. I quietly read, smile and feel reassured that during the worst of times, people are still connecting. The tangent conversations are usually attached to someone’s comment so easy to scroll over, but also fun to read. I’m a long way downunder, some times that is isolating, and so I really appreciate the connection that obviously has developed between many who post on here.
As a regular poster I do find it hard sometimes keeping up with all the replies especially when someone goes off piste. And the German in me likes to keep to the point. But I wouldn't have it any other way. The alternative would be one-way giving out facts without the natural ebb and flow of a conversation. I feel with all the little asides that I am amongst friends even though we've never met, and I'd be lost without the support and advice I get on this forum.
Totally agree. For the record I'm part German, part Jew, part Irish and part English. Probably why I sometimes go off-piste 
You should be on 'Who do you think you are'. Says TC going off-piste 😀
I know who I am. A catalyst who is practical and knows how to make things work. The different nationalities make themselves known in situations and help me understand and sift through discrepancy. Mind you I could equally be bonkers
I was refering to a TV prog where they get celebrities and delve into their ancestry. Catalyst sounds a good description, might adopt that myself
no TV since 1978
I get your point about some threads getting long. Though I do think that the balance in this group is pretty good and it goes off piste a lot less than some groups that I have been in. And it's natural for some topics to not be directly PMR related, especially when newcomers are not sure if something is autoimmune related or not. As a support group, at times, some people are just going to need some support, rather than the benefits of clinical information or experience, especially when PMR/GCA also have such an impact on our overall wellbeing. I think the ad hoc content adds to the sense of community and it makes the forum more welcoming and adds to friendliness. In my experience, when admins in some groups go overboard on being strict about content, it can feel a bit unfriendly for newcomers.
The Patient.info forum was like that because it was computer says no on certain trigger words! Drove me nuts for a while until the chief moderator told the computer and the baby moderators that I could say what I liked without censure so he didn't get bothered.
But then they made it next to unusable and it pretty much died the death with everyone coming here.
I think maybe if I do a techie post, like the ones I did on Zoe and depo-medrone injections, one that people might go back to in the future, I should ask people to keep to the topic so in years to come people can find the info they need quickly without having to wade through the off-piste bits? Would that be OK, if I explain and ask nicely? I still get messages saying people liked or saved some of my old posts even though some of them go back years. I've been on here since about 2015 I think, even though PMR is supposed to go away in 2 years isn't it? 😆😆. See now that will cue a tangential thread as to how long peole have had PMR that's how it is 😀😀
You can ask… but I wouldn’t bet your house on it!… as I said further up in thread, for it to be user-friendly it evolves like normal conversations do… and very often there are addition tips and good advice in the replies.
Not quite sure how you are going to manage only getting what you consider “appropriate“ responses. The only way is to post, then ask for replies to be stopped.. and tell people within the post to send you a Chat - but you may well be overwhelmed, and many will miss out on others tips/advice. Not sure how that’s an improvement.
If people read your posts and like them, they can always just copy just the actual post without replies and then save and/or print.
I worry that the newcomers are shocked to find that many of us are still here and soldiering on with this condition which they have been told will be done and dusted in two years, as I was. So much goes over your head when you have a diagnosis of PMR, especially if you have been immobilised and scared for months or even years before getting the diagnosis. Back then (2017)I had no idea about the unwelcome side effects of steroids, what a flare meant, or adrenal insufficiency.
It seems from the responses to my post that the general off piste chat is welcome and informative so I think it is part of the way this forum (a club no one really wants to be in! ) functions. Chrissie
That’s why I wrote my intro/info post for new patients -send a link in most first posts from them…
Possibly they are shocked - but it is inescapable I fear. There is no way to operate a stepped access with a cosy introduction to break people in gently - and unlike a lot of doctors we do tell it as it is.
Maybe a lot of people DO get over it in 2 years? We just don't know, as so little research has been done. I only started Googling and looking into PMR when I'd had it over 3 years despite what the GP said about 2 years, so wondered what was going on. So possibly people just do as the doctor tells them and don't bother researching until something goes wrong? Especially as many are older when diagnosed so maybe not of the Google generation?
As Fran says in the first Myth Busting post - “research shows 50% of patients get through PMR within 2 years”…. and if they do, then they probably have a relatively easy ride and don’t need additional help/advice from this or my other forum.
Where or when that research was done I’m not sure, but hopefully the charity knows otherwise they wouldn’t quote it…
I'd like to know the source of that 'fact' and whether it is from Dr Mackie's research at Leeds with Dr Pease, I presume it is. I think I recall over 25% have it more than 5 years and the median is around 6 years. It bugs me when people quote facts but don't say where they came from. I can't find the article now but will go have a rummage
The median figure is from Matteson's work at the Mayo at Rochester, I think Sarah's figures come from work done at Keele - retrospective analysis of records I think.
I think it was from one of the first things Sarah did when she arrived at Leeds. As she said she discovered there were so many people with long-term PMR. She has featured the graph in some of her talks but I can't find it, might have been in an article called something like Can the duration of PMR be predicted at onset
pubmed.ncbi.nlm.nih.gov/200...
But it doesn't match my experiences - I had normal range markers. And I was started at 15mg, instant response. It is a lot more complex than that work suggests.
It's a very old study now. I read it as saying that if you need at least 15mg at the beginning you are more likely to have it longer. I had elevated bloods. Somewhere there's an actual graph
No, I think it is if you need MORE than 15mg. But I don't think it is as clear as that, What I'm pretty sure DOES make for a longer course is mismanagement and allowing flares, though why I don't know.
😀Thank goodness this forum is here to guide people at all stages of the condition in a friendly supportive manner. Personally I would be lost without it. 😀
As many don't as do at the very least. In the past, many people arrived in tears because their doctors were blaming them for not being over it in 2 years and trying to force them to reduce and get off pred. I know people who got off pred in 2 years - and met them through the charity and support groups.
That's what I went through, being told I couldn't possibly have PMR because I was too young and even if I had had it it would have gone away in 2 years, and that was from someone claiming to be an expert in PMR! Luckily I found this forum and also literally threw Kate Gilbert's book at him
I told my first rheumy that his understanding was not only wrong but dangerous. He said that if diagnosed with PMR/GCA at 50 or younger it was a wrong diagnosis. I said he was blinkered and arrogant.
I put in a complaint about mine, and was told I wasn't the first ....
That's my style and far prefer full on rather than round the houses.
I was watching a programme earlier where a doctor actually said you should NEVER say "never" or "always" about a disorder and its symptoms in medicine. Actually shows they aren't the scientists they claim to be.
this is a considered forum and even off-piste comments often help us get through the daily grind of adjusting to our state. Moderation is well policed so please no changes. I too echo and understand tangocharlie's wish to stay on topic but I like the mischievous intent of some.
No rheumatologist at Macclesfield hospital
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PMR and Steroid Perscription
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