The most common mistake that Rheumatologists make is to under- treat
The most common fear in patients is side effects.
These two compound together to produce worse outcomes.
Retweeted by my Rheumatologist Dr Sarah Mackie from another doctor.
The most common.......: The most common mistake... - PMRGCAuk
The most common.......
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SheffieldJane
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Yes thanks SJ !! - this doesn't surprise me and ultimately is completely counter to what using Pred is meant to achieve anyway. It is also interesting that we as patients 'comply' or even ourselves become indoctrinated with the idea that even a few milligrams 'extra' is a really 'bad thing'. I have struggled with this myself the past 2 weeks trying to 'treat' my GCA flare/relapse and only very begrudgingly taking that wee bit more to TOTALLY annihilate rather than just reduce the symptoms. It is our bodies or our condition (not 'us') that actually usually TELLS us what we need. Hope you are doing OK.!
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Do you know who tweeted it originally?
I should start a thread - Sarah wants to know what we wish doctors knew ...
Might not be a very long list!!
Not WHAT they know - what we WANT them to know!
I think flexibility (in dosage or taper etc) is something that DRs seem to be a little scared of ... rigidly following the arbitrary NICE guidelines (in either direction) seems to give them some protection if anything goes wrong - and I do get that, but it seems to hinder them in feeling more able to tailor the needs of the individual patients - so maybe this is a thing that we wish NICE knew??
When it suits them doctors will tell you that "Guidelines are only guidelines, suggestions, we don't have to follow them!"
Usually, it must be said, when you point out that the guidelines say "individually adjust the taper to the patient", or that we should have a dexascan before starting AA or that we should be monitored in a particular way or the like.
Ha ha, you're so right ... even though I'm very new at this, I've been trying to 'line up my ducks' for when the taper time comes ...
I've not started the AA as I've not yet spoken to my dentist ... been on the pred for just over 3 weeks now and gone to 12.5 from 15 the other day ... so far so good but it's only been a couple of days so I'm not counting my chickens yet ... anyway I guess there's plenty time to think about the AA and research a bit more... to be honest I'd got distracted by other issues and forgot to ask about a Dexa scan first ... so that'll be top of my agenda on my next appointment in a few weeks ... in the meantime I'm fingers crossed the 12.5 is going to be doing the trick...
Have a look at this before you make any decision involving bone meds.
healthunlocked.com/pmrgcauk...
Wow, what a wealth of information HeronNS... Extremely interesting. I have read some bits about that already and it all ties in, but you’ve clearly done a whole lot more ... thanks a lot, it is Greatly appreciated 👍
I looked at her Twitter feed, to find it again and it was so interesting and also difficult in parts for the lay person, that I got distracted, it must be far down. It had popped up in my side bar. It was a Dr Paul something and she re- tweeted it. My eye was caught by another Rheumatologist who said “ what if our PMR patients who go on to develop GCA actually had GCA all along?
Gripping.
I wish our doctors knew that for the most part, with a little guidance, most of us have the intelligence to responsibly manage our own taper. She knows.
Well duh ... A lot of us with "PMR" actually have large vessel vasculitis or GCA ... But they don't eevr look until it gets difficult
I said to my GP on my last visit - that I actually likely had GCA all along (- and yes I suspect it is LVV) . There were however originally a few weeks before my PMR officially 'morphed' into GCA. I recognised this as a rather 'dangerous' gap retrospectively when I read my original notes/dates and saw that what I thought then was a concomitant sinus issue or allergy was in fact GCA. I have seen this perhaps too 'common' for comfort hesitancy or confusion around dx (interestingly) described as : "GCA with a Polymyalgic presentation" .... ummm !!!???
Talk about sitting on the fence! Isn't it about half of patients with GCA have a "polymyalgic presentation"?
The other rheumatologist was Chetan Mukhtyar, my consultant. (Spoke at 2019 agm). He has said to me that PMR was a form of early GCA.
That makes sense.
It was another Rheumatologist who said about under treating and side effects though
Yes. Don't know who said about under treating and he may not have been the origin of the PMR / GCA comment, he said it to me in a consultation.
I think they drop the ball in not teaching patients how to use predisone successfully. Diet, side effect management, exercise programs, typical withdrawal symptoms all could be addressed. That's what I expected when I went to a "specialist' I got none of that. Pretty much left to find my own way. Thank God I found you all because you addressed the above issues plus gave me emotional support ❤️
I absolutely agree with bunnymom. My rheumatologist admits he doesn’t know what to do with me. I have had to take charge of my own health. I find doctors keep doing the same thing expecting different results. Isn’t that the definition of insanity?
Yes indeed.
That's the problem! WE may make a list of "wants/needs" but many have been doing that for years and years. The consultants/rheumies/doctors just don't listen. One great error in training doctors is the need to "listen".
Yes, a dangerous thing, especially with GCA.
But I also have been wondering about overdiagnosis too. I have recently had two 80+ year olds cheerily tell me they were diagnosed with PMR and given a short course of prednisalone and it cleared up in a week. Clearly this is not PMR ....and possibly likely to be other short term aches and pains that would respond to anti inflammatorys.
Both were aware the course was for a longer course but both stopped taking steroids after a week because they felt better!
Of course it must be pointed out that one diagnostic criterion of PMR is that the stiffness and pain have persisted over a period of time, 6 to 8 weeks usually.
My stiffness was quite acute though. I developed it over a week. Though had had intermittent ‘sciatica/ pisiformes ‘ for the year before. But my aching shoulders were quite sudden.
No, that wasn't what I meant: then it should persist for some time.
Well most of us could stop taking steroids after a week because we would feel better if the diagnosis and treatment were correct. The proof one way or another would be whether or not the symptoms flared up again in short order!
It's a wonder more of us didn't stop. The euphoria of being pain free after taking the first few tablets of pred was amazing. At the time (8 years ago) I thought "if you have to have an illness in old age - this is the one!! One little tablet and all the pain disappears!😂😂😂
My doctor didn't tell me I was in this for the long term. I had such a magical response I thought I was cured and just needed to taper off slowly, and would be done and dusted in three months. 😁😎
Yep! We 80 year olds know a lot!!! 😏☹️🤪 A week??
I had a fall out with an Oxfam helper who heard me telling a friend of mine about my pmr. She said she had had pmr for a few weeks and cockily said she would never take steroids. I said "you've never had pmr then as pain horrendous." She was really rude so I just told her her Dr didn't know what he was talking about! Nearly came to blows😩😂
I know....`I wonder if doctors throw steroids at lots of aches and pains and call it PMR. The 80 year old I know is convinced he had PMR for a week and says I should come of steroids! He says he was diagnosed because he couldn't lift his hands above his head.
Wow, it sounds like that intermittent treatment of what turned out to be a chronic (if eventually self-limiting) condition really messed you up from the beginning. Good that you have finally got a handle on it, but a long road....
I was diagnozed with GCA in October 2019. For the last 20 years my Bipolar Disorder has been kept under reasonable control. I wish the Rheumatologist had alerted me to the possible extreme side effects I might experience:
1 .Euphoria for 6 weeks - when I thought I was enlightened.
2. Manic behaviour for 4 weeks when I was irrationally prone to outburst of anger, abuse, irritability, intolerant, agitated and anxious. My wife majorly suffered with this.
3. The worst and bleakest depression for 4 weeks 'till the present tme. The worst depression I've known in 20 years.
• in reply toVicSat
We often talk about the initial euphoria of pred and how irritable and the anxious you can become (with partners bearing the brunt) and then having low mood as the dose starts to reduce and the reality of chronic illness strikes. This doesn't happen for everyone. I can't lay my hands on the research I read when this issue or issues were discussed once, but it argued that people with a history of depression or mental health issues were more prone. It was a usa journal but I can't remember the exact details. If I come across it again I will post it.
Thank you for your honesty. Please seek help for the uncontrollable anger. 🌹
I didn't have any history of being bipolar.
I think that history has proved critical in my behaviour.
It's certainly flagged up in the patient information leaflet in the UK. It says 5 out of 100 potentially suffer serious mental health problems and lists a range of feelings etc. It is in bold and says report to Dr straightaway. I keep a box of all the PIL and if I feel a physical or mental. Health problem I go through the side effects. Easier to take in than the online versions on hardcopy for me. I do believe Dr's don't mention it for pmr doses but should for GCA doses of 40mg upwards. I think you have had to take high doses too so should have been explained. There are a few members who have experienced mental health problems with pred, but many who report severe symptoms have often had pre existing problem or are on very high doses.
It would be helpful to describe what you feel. I think that we all get pockets of time that are strange, or frightening. X
I am glad you feel better now. It is very distressing to realise you have had had the psychotic break and distressing for the family to see it. It was a research paper that suggested pre existing MHP contributed to the break. Sadly if it happens because of the pred its in the first few weeks. I suppose its like all meds some people... up to 5 in 100 in this case... can have a terrible reaction to meds.
That really does add insult to injury. But at least it's "better" than not being given pred and losing your sight permanently. It just struck me that research on whether a wrong dx with pred makes MHS arise more potently. I suppose I mean the pred is controlling the inflammation if it is gca as it is being utilised. If no gca perhaps it's sloshing even more. That would be useful to know diagnostically. Take care.
I agree totally re positive experiences. I have had bad ones with a couple of meds and my toes curl when others are on them, but if they are fine with them that's great.
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