I'm having a bit of a 'turn' today - I LOVE that particular word which my grandmother used to use (in about the 1950s/60s) - she'd say:
"Bert !! (to my grandfather) did you know MRS 'So- and -So' has had a "TURN" !!!
As a child this puzzled me greatly - a "TURN" !!! - which I naturally related to having a 'go' on a bike , a merry-go-round or something you had to 'share' with other kids which was usually 'FUN' - it seemed all so strange as she never explained the 'content' of a 'turn'. But today (whatever it is) I am having 'one' - and sharing with those of you who understand one of the less 'fun' things of our lives ...
I diagnosed (myself) in Feb 2017 (after 6 weeks of obvious PMR first) with GCA - and took 6 weeks more to reduce from 60mg to 30mg - then quite 'slowly' down to 15mg at the beginning of 2018. THING IS I have tried very slow (0.5mg tapers) since then - got as low as 12mg once then ALWAYS with returning symptoms having to go back to 15mg which is where everything stabilises. After the last couple of weeks on another reduction to 14.5mg I was thinking 'YES" !! I am doing fine this time and at last on my way 'down' - BUT then developed some rather uncomfortable pain in my temples over the last few days which is exacerbated when I open and close my jaw - something I've NEVER had so far in the whole 'adventure' of GCA.Ffirst I thought a tooth or something else but I know I have been dissembling ...
I have fortunately had a very helpful GP and chosen to stick with him rather than venture into the land of 'specialists' which I fear may be more dictatorial with me in their decision- making - well the evidence unfortunately points to that probability here. So my very pleasant GP has agreed to let me 'manage' my Pred dose and even kindly referred to me as 'intelligent' saying he trusts my judgement. So I have no real problems treating symptoms rather than referring to my inflammation markers which have not been hugely indicative. Luckily so far side effects have been minimal - weight stable (slightly overweight) and my only other significant issue is very low grade - so far (due for my next scan soon) osteopenia - 'just' in that category.
BUT I am still feeling rather disappointed - AGAIN digesting the reality that tapering is NOT about actually totally 'controlling' GCA - or making it 'better' but only responding to symptoms as closely as we are able - (ie. to where we are REALLY 'at') - and I am still 'here' with the disease humming away in the background.
Regardless I HAVE actually been feeling less tired and clearer in my thinking -I believe my memory has improved a lot and my mood has been generally better - so JUST WHAT am I 'complaining' about !!?? - well I'm sure you all 'get it' and thanks for listening - I just want this ALL to be 'over' and soon !!!!!
Best wishes
Rimmy
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Rimmy
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I too am at the 15-12mgs and back up and try again and again debacle. I really do understand. I was diagnosed in May 2016 with PMR and in September 2016 with GCA. I was stuck at 20 mgs for about 7 months, a little tweak up a little tweak down, seemed to take for ever to get under control and I think that is happening again. In fact I have been sitting up in bed since 2am trying to work out what sort of head ache I have and those of us with GCA will know every little head pain has to be scrutinized. Mine I am sure is down to arthritis in my neck, tempero mandibular joint disorder and tension. But the doubt is there, I hope you work out what your new pain/discomfort is due to very soon and can change the medication to a suitable working dose and this particular 'turn' quickly becomes a fading memory.
Thanks Judy - so 'good' to commiserate with you - although that sounds perilously like a 'misery' derived word and I'm not really that 'bad' - just kind of 'over it' today at least. Yes I can really relate to the little head sensations and 'twinges' which we GCA-ers inevitably 'examine' as signs of maybe *something* ... At least I can also see the silly side of it all - watching my own 'peculiar' behaviour as I try to figure out - even 'outwit' what is truly sometimes the most baffling of conditions. It sure does cast into a new perspective for me what 'dis' - ease can or might still be and I am thinking it isn't anything surely anyone of us could have ever imagined ....
I woke up with a booming headache this morning at the back of my head. I was thinking “ this is it, PMR has morphed into GCA” by the time I’d been to the loo, it was gone. Significant?? The way I was lying? The stuffy weather? I really don’t know. 😖
LOL !! - we have become 'weather vanes' - perhaps we should all 'hands up' for the forecasts for goodness knows our crowd isn't (even with all the IT) very 'good' at it sometimes ...
There’s a lot to be said for the “old wives tales” related to weather and ailments. Was all they had to gauge things in the old days- of course now it rubbished by the younger, less wise generation!
Hi Rimmy, I get what you say about wanting this to be over. My personal challenge is PMR, which was diagnosed in 2013. I was confident I would be "over it" in a year...and have been repeatedly corrected on that mistake, over...and over... and over....
I am beginning to feel less tired and clearer in my thinking, and am actually getting moments of ambition...actual desire to do things. Well, I admit, the urges are short lived...but I get them!
I do have times when I wonder if this condition ever goes on its way??
My 7 th decade was not intended to be the time when I got OLD, but it sure feels like that is whats happened...
Oh well Friend...its late in the evening here, so time to retire with a new book, and then to sleep.
Having a turn is up there with other successfully describing phrases such as 'a bit poorly' and on this site, there is shared understanding of what we mean. Take care
Quite likely, of course when we were young that was never mentioned unless in hushed tones and referred to as “women’s problems” along with many other things!
Interesting comment about inflammatory levels. I had a blood test a couple of weeks ago and, after normally having CRP levels between 1 and 6, (apart from my first initial diagnosis when CRP was 138!!) this test showed an increase to 38. BUT, I'm not experiencing symptoms any worse than usual. I suppose it just emphasises the point that symptoms are the key to managing this illness. I'm currently at 12mg per day - started at 40mg last June - but taking it very slowly. Some days I feel I'm quietly going mad ( not always quietly😉) but just sometimes I can almost pretend I'm ok - and that's when it's easy to,do too much and suffer twice as much the following day!
I too can remember the expression "having a turn" and, after many years of wondering what on earth they were talking about, I've now become the expert!!
Yes Janann I have come to think 'symptoms trump' everything else - and 'we' - the ones experiencing them (unsurprisingly) seem to know that the best - as with our little bouts of 'madness'.
Thanks and all good wishes
Rimmy
And then there’s having a ‘Funny Turn’ though l doubt there was/is anything funny about it at all!
My favourite description of how I’m feeling is “I’m not so very sparkling today!”
Which actually translates to feeling as ill as it is possible to feel without actually dying! 😂
Master of the Understatement!
Hope you feel better today 💐
Mrs N x
• in reply to
Hehehehehehehehehehehe. LOVE IT! "... as ill as it is possible to feel without actually dying!"
It has always puzzled me that a disease that lasts at least 2 years, on average 5.9 yrs. in the case of PMR, a bit less I believe for GCA, should only have the symptoms/ inflammation treated for the shortest possible time. No sooner we start on steroids we are told to come off them. Like dabbing a wound then backing away quickly. Of course the symptoms will creep back once we go below the controlling dose. Yet most doctors say “ we must get you off these steroids” and offer “ steroid sparers” that don’t work very well ( hearsay).
I think your plan of listening to your body, following your symptoms and accordingly tweak your dose, is the right and only one. So the “ turn” probably needs to be treated. Or more rest/ sleep needs to be had, or that stressor avoided, or that worrying thing cancelled, or that item cut out of our diet etc. It is a full time job managing this. I am glad that your GP recognises that you have the wisdom to do it.
I hope you feel much better soon. I always want to” bottle it “when I feel good, I am never quite sure what I did right. Often it has been a string of dull sleepy days, doing nothing much at all, then suddenly I take a “ turn” for the better. One filling at the dentist this week has snuffed out my two days of feeling good ho hum. Hot house plants. X
Thanks SJ - your response is as usual empathic, caring and 'smart'. Dentists - well they (let's face it) aren't 'fun'. Perhaps another generational thing - I WAS after all held down in the chair as a child with less than 'good teeth' - not enough enamel on first ones and second ones (though have kept enough so far) have taken inordinate attention. I am delighted my middle-aged sons have much better teeth and my grandchildren seem to have noshers from 'heaven'. Anyway I hope you redeem YOUR share of 'good days' soon !!
Dentist said I’ll take this tooth out you don’t need anything , you are tough and I’m quick . Got a good one now but as a child terrified. My kids have no fillings ,both in forties . It was barbaric then I think .
Omg that reminds me of having teeth out as a young child. I don't remember the first one, but when the second one came out I still remembered and was terrified. I remember having something vile smelling sprayed in my face (this is a four or five-year-old's memory) and a vision of black demons dancing and chanting around a huge green light/cauldron. This happened again when I had a third tooth out, and a couple of years later with tonsils. When I was having a biopsy of a lymph node in mid-thirties I was still so traumatized I asked if it could be done under local anaesthetic, which it was, an interesting experience in itself.
Of course they thought they were doing the right thing, putting us to sleep and we wouldn't remember anything. When I had my tonsils out my father, a doctor, was in the OR although not performing the operation of course. He told me that I should try to blow away the gas. I did this, and what happened, as he knew it would, was that I inhaled the anaesthetic more fully and quickly and went unconscious much more quickly than I might otherwise have done, but not without passing through the circle of demons first....
Let's be sensible here, I don't think I would have enjoyed having my teeth pulled without anaesthetic. What else could have been done? We are talking about well over sixty years ago. I know things must be very different now.
Yes obviously they needed the anaesthetic for such procedures but perhaps what was frequently lacking was the reasonable 'explanation' of what was happening to us - the capacity for children to comprehend many things was often underestimated or not thought even 'relevant'. Mind you sometimes the drugs didn't work very well either or weren't administered properly. Of course all this has improved - and it needed to !!
I don't think anyone would know what would happen in my brain when the chemical hit it. I blame no one for this, except the adults who didn't make sure my teeth were properly looked after so none of this would have happened. SheffieldJane 's experience sounds more horrific, but also she was older so would remember more about the circumstances than I do, the last being the tonsils and I was only seven, and I do remember how quickly I went unconscious because of my father's advice. I was so grateful to be getting something done because I'd been basically sick with one germ after another for months, this is the early days in Canada, that when I woke up I thanked him for having my tonsils out! And, yes, I was quite a bit better after the operation. Nowadays the tonsil thing would be done differently, too, as they don't automatically come out any more. In my day most kids had had their tonsils removed by the time they were three.
They then went through a phase of exactly the opposite - and an experienced paediatric doctor told me he thought they had gone too far and many children were left with tonsils that were causing more trouble than they prevented. It is becoming more common to have them out again though.
Interesting - I was left with mine which weren't too good - I had repeated bouts of tonsilitis into my 20s - and I recall being too sick to even go to the doctor and not able to swallow water for 3 days (should probably have been hospitalised) & when treated it was large doses of antibiotics with all the side effects. My mother had hers pulled out in a country NZ hospital in the 1930s - they left remnants which caused her problems for years. 'Tonsils' aren't therefore my 'favourite' subject - shudder !
My Dearest Rimmy, I may be new on the path, but "I get it," I so get it. And I am sorry you are "having a turn" today (although I do love the phrase and see it being used in a future Blog!, if I may?). It's ridiculously hard to have to deal, day in and day out, with the various and subtle nuances of these illnesses without having it take it's toll on us mentally and emotionally. You've seen first hand the emotional rollercoaster I've been on for 7-8 months!
I understand also the "disappointment... I fall prey to the belief that my Pred intake, is directly related to my health! And if I continue to reduce my Pred intake, I must be getting getting healthier and my GCA/PMR must be going away! It's all such a glorious mind trap, isn't it... because as you said, all we are doing is responding to the symptoms while the diseases hum away in the background... going nowhere until they are damn good and ready!!!
Have your "turn!" Embrace it. Explore it. Allow it to be. It is after all part of YOU, and the way YOU have chosen ( consciously or unconsciously) to (at least for now) deal with these illnesses. I agree with Frank, when he said....
“Basically, I'm for anything that gets you through the night - be it prayer, tranquillisers or a bottle of Jack Daniels.” ~ Frank Sinatra
Ha ha !! - you always make me smile Melissa - and I really appreciate that as I CAN sure be 'morose' while trying to convince myself I'm just being 'philosophical'.
Yes - eyed off - and then drank half a bottle of red last night - which I only do very rarely by contrast with my younger self - but it 'helped' ... as does sharing all this here with you and everyone kind enough to 'put up' with me ....
My late Mum was always saying she had had a “funny turn”. Unfortunately she was a hypochondriac so we often took little notice as she recovered quite quickly. One day visited having not seen her for about a week and she said “I had a bit of a funny turn last Sunday. I called the emergency doctor because I couldn’t remember what had happened that afternoon.” 😲
Doctor thought she probably had a stroke (or more likely a TIA), The one time I needed to be there and she didn’t call me and I was oblivious! She was OK apparently and little further was done.
However she did develop vascular dementia and this episode probably brought it on. So much for a funny turn. 🙁
I wasn’t as kind as I should have been to my mum when she displayed the early signs of frontal lobe dementia. It removes inhibitions to say the least. I spent 7 years making up for it though, but for most of the time she didn’t know who I was. Not as sad as it sounds, these unexpected detours in life can be rewarding.
I can relate to that. My Mum was always a difficult person, so the early stages of dementia were difficult to spot. It was just like Mum being Mum, whilst in reality something else was starting. In retrospect very sad. But we are always wise after the event.
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