A GCA 'FLARE' DON'T MENTION THE 'SCALES' AND FEELING 'BOMBASTIC'

[Rimmy]

Hi everyone

Perhaps I just was feeling all stirred up about the 'injustice' of a lot of things when I visited my GP today. After reducing JUST 0.5mg from 12 mg - which I spent several weeks on I have had a nasty GCA 'flare'. Sore head and temples, PMR neck, shoulder and hip pain, blurrier eyesight and lots of the 'deathly fatigue'. So decided to get some bloods - my CRP is usually the 'best' indicator of upward inflammation - and to complain to my quite excellent and very empathic GP. He had a trainee (younger doctor) with him today though so I realised maybe I should not be quite as 'bombastic' as usual and start dictating just WHAT I would do next etc etc etc. BUT couldn't help myself - I repeatedly interrupted his 'education' of the polite med student AND REFUSED outright to get on the scales as I have every other time I have ever seen this doctor. I did explain it would be 'counterproductive' and I would only eat more for comfort if my weight was moving upwards - BUT this time it was a battle of wills and in the end he said he wouldn't sign any scripts or anything UNLESS I got on the scales - so I spelled out the 'F' word and got on them while he very politely 'covered' the result. Luckily for me he made no comment on what must have been a 'disastrous' measurement and I pointed out to the student that this would surely help him one day when dealing with recalcitrant 'patients' such as myself. (I later thought of Amy Winehouse and 'rehab' - but look (sadly) what happened to her). I also said I would NEVER go back to the ophthalmologist he initially referred me to as he was so 'rude and dismissive' and didn't even seem to 'believe' I even had GCA - despite all evidence to the contrary. So just COULDN'T keep my mouth shut today and behave for my extraordinarily kind GP who was just doing his best for myself and the student- oh dear - I blame um 'something' .... maybe not enough Pred - so 'up' I go again...

Best wishes to you all

XX

Pic - small wildflowers which grow nearby in Spring in pure white sand.

[Longtimer]

Know exactly what you mean....now come back from Podiatrist at local hospital, blunt, rude dismissive, …."we won`t be touching you while on steroids, or at least till you are down to 5mg" ok I get that, he didn`t offer anything I could do in the meantime, or about waking up every night when duvet touched my toes....I told him I was in the middle of a flare and could do without the extra pain...too bad was his reply, then proceeded to tell me step by step, what the main hospital would do if they ripped off the nail!....so, I`ve said I wasted my time coming to see you then, last bit of advice he gave grudgingly was....long nails on feet are healthy nails!!...won`t be going back to him!.....

Yes, the F word was mumbled as I walked away...….

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

What a ridiculous statement from your podiatrist. I’ve had regular appointments since 2012 when I lost sight of right eye and was on 80mgs.

What planet is he on? Needs reporting.

[Longtimer in reply to DorsetLady]

Yes, I quite agree.....twice he said, and nearly typed Fibromyalgia, both times I had to correct him .......Polymyalgia.......and say they are very different!.....

Did you have an ingrown toenail treated while on steroids? if you don:t mind me asking....thank you....

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Yes I did, but it wasn’t too bad. See my podiatrist every 6weeks privately, so she keeps on top of things.

Fortunately don’t seem to have had ingrowing nail since been off Pred - coincidence? Not sure.

But I see her because of sight problems and recently knee and hip replacements!

Would probably do myself a mischief if I tried to do my own!

[Longtimer in reply to DorsetLady]

Thank you for that, don't know how much longer I can stand it, but I certainly won't let him touch me!!...

[Telian in reply to Longtimer]

I did Longtimer, they made me wait until the nasty infection that would not heal for months on end had settled before operating, not because of the level of steroid I was on. I had both done at the same time and they took a year to fully heal - far better than the pain prior to surgery though and was a complete success. The only thing I have now are very dry nails that break easily. Think it’s down to the treatment they use at the time of surgery that ensures the removed nail doesn’t grow again. I wouldn’t let your Podiatrist near me.

[Longtimer in reply to Telian]

That,s a long time to heal, and you were brave to have both done together.....I will keep my podiatrist checking that an infection doesn't get a hold......do you get checked that the new nails don't grow the same.?..if you don't mind me asking....

Thank you

[Telian in reply to Longtimer]

More like silly through ignorance -when the surgeon said he’d do both together I did query it but didn’t think anything more about it as it seemed normal to him. I also asked if I would be asleep and he said ‘ no we do them awake’. Yet on the day he greeted me with ‘you’re the one staying awake!’ To be honest I didn’t want to be put to sleep either but it didn’t seem an option. I didn’t like the prior injections though never felt anything afterwards. Again it was worth it, the toes are so comfortable now. There are no checks now - if problems did come back I’d see my GP to be referred back. Do you think you have to have yours done?

[maria40 in reply to Longtimer]

That's quite ridiculous. I was referred to NHS podiatrist from my local OA advice group where I was sent by then Rheumatologist. I'm asked at the beginning of every session if my medication has changed and what dose I'm on.

[Longtimer in reply to maria40]

He was ridiculous!.....he had the attitude that he didn't want to be there....well neither did I......he made me feel like I shouldn't have gone there because I was on pred.....but I will go back to my doctor if I can't stand it any longer, and only go to main hospital.....I always thought if ingrown nail is left if could cause an infection into skin where it is pressing on.......fingers crossed

Thanks for that.....

[Oxford8]

Lovely picture Rimmy. Well done in sticking to your guns. A battle a day keeps the doctor at bay, as someone once didn't say. 🙂

[stellafmdm]

Well there's a turn up for the books! My Podiatrist never turned a hair when I told him I was on Pred!

[Daisychain12]

Rimmy darling I HATE that you are upset and unwell. Being so empathetic you do best when in nature and in a peaceful environment. I am asking you to please darling try to block out external stress and focus on your precious self. The upset here will pass. If you can try to settle your sympathetic nervous system you will feel much better xxxx

[Daisychain12]

Rimmy are you any better today darling? Xxxx

[Rimmy in reply to Daisychain12]

Thanks Linda I am really OK - just was feeling a little peeved by some 'stuff' - but life has its ups and downs. I am disappointed that such a small taper seemed to produce such a BIG backlash and then I was looking forward to seeing my GP for a real chat - which we usually have ! I didn't really feel like having a student around although generally I am supportive of this as young doctors need all the experience they can get ESPECIALLY learning about PMR/GCA etc. My doctor introduced me so nicely to him saying I was 'a perfect example of a patient who knew MUCH more about my condition than any of them ever could' - and he was being serious and complimentary not joking or sarcastic - he is a very decent person. I JUST didn't want to be put on the scales in front of anyone else - SILLY I know but I am almost 'over' trying to control my weight fluctuations so I had a mini tantrum - I mean really !!! (LOL) Well you know how it is Linda it's hard to be in control all the time and I am irritated about the flare - BUT it will all come out in the wash as they say - so THANKS so much for asking after me - I hope you are doing OK - we WILL be 'better' one day !!!

Much love to you dear Daisy

XXXXX

[SheffieldJane]

What a lovely picture you paint of those wild flowers in white sand.

Good for you Rimmy, we women, in particular are subjected to so many medical indignities, so you took one for the team.

I am very sorry that you are feeling so rotten and sincerely hope that you are able to climb comfortably back into your skin, very soon. My spirits always rise when I see your name on top of a post. I expect you are boiling hot and that doesn’t help. The U.K. is crisp and cold and sunny, with little signs of Spring everywhere thank God. Take care, Jane x

[Rimmy in reply to SheffieldJane]

Thanks so much SJ - what a lovely thing to say !! yes the whole 'scales' thing has made me reflect on all that stuff I have known for a long time but put on the backburner as just part of the GCA/PMR experience of 'extra weight' ! You'd recall no doubt the book 'Fat is a Feminist' issue - from around the 70s or 80s I think and how complex a woman's relationship to her own body and appearance can be in a global context of 'attractiveness', 'desirability' and even 'acceptability' closely associated with 'THINNESS'. This has only become more pronounced since I was a young woman and females (particularly) are now subjected to an obsessive archetype of the 'fit', 'healthy' and slim body and expected to internalise this. Of course I don't now give a 'fig' for all this nonsense EXCEPT subliminally when 'forced' to stand on scales in front of two male doctors . Tt was sure a 'patriarchal' moment for me as my GP said: 'I have the pen' - implying if I didn't he wouldn't write me scripts etc. Of course I wouldn't have minded telling him my weight so he could record it for medical necessity - levels of drugs. dramatic alterations and general health etc - but I was very stressed (also there due to the flare) and it just felt VERY humiliating. At least I did retort 'well I am currently the same weight I was when I was 19 - and how many people can say that !!??' and that I had tried various diets over the years but always drifted back to almost exactly the same point on the scales - I am in the ;overweight range but not 'obese' - a BMI of about 26. But all of this made me feel furious for ALL women - as it was clear these two young male doctors had NO IDEA of the complexity of that situation and dismissed my feelings and clear protestations completely. From their POV I was just a probably behaving just like a 'silly' 'irrational' woman.

Next time I am at the doctors I will explain this to him as he is usually receptive and kind - (he often compliments my knowledge base about GCA) and he wont be trying to impress a trainee doctor - but it WAS upsetting !! Sorry to ramble just getting this off my chest and to someone who clearly understands what that 'felt' like !! I do appreciate you SJ - always intelligent and insightful ...

Rimmy

XX

[PMRpro Ambassador in reply to Rimmy]

Hum - it is accepted that older patients do better with a slightly higher BMI. They'd have had an earfull from me - who, because I'm 5' in my socks, hover nicely about BMI 30+ with pred. I've always been overweight and it takes a lot to lose weight, but my GP never says anything.

[Rimmy in reply to PMRpro]

Yes Thanks PMRpro - that is why I think the 'Smart BMI' is more meaningful - taking into account age, gender and to some degree ethnicity - in that scenario they say I am 'normal' for my age and dieting would NOT be beneficial !!

[SheffieldJane]

Good for you Rimmy! I agree with every word you say. I watch a lot of old 1930’s 1940’s movies, the male heart throbs are usually extremely thick around the middle and a good 20 years older than their slender female counterparts. Hurrah for Beyoncé and Kim Kardashian making it alright to have a big bum. We are not boys.

I am glad your doctor is relatable. I am glad you are educating him further.

Carry on being beautiful you. 🌸🌸🌸🌸