Clinic Note: GCA patient is completely non compli... - PMRGCAuk

PMRGCAuk
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Clinic Note: GCA patient is completely non compliant with my excellent treatment plan.

I'm disappointed. Even though I'm not completely surprised by the viewpoints expressed by my rheumatologist, seeing his judgement of me written in a clinic note feels bad; pure and simple. He wrote, that He " recommended fosomax for my bones-I declined. Recommended see neurologist for bilateral headaches- I refused, he recommended endocrinologist for possible steroid withdrawal-I refused. Patient refused methotrexate and actemra. Patient had researched gca on online forums and mayo clinic website.." He finished up by stating he would " try to preserve a therapeutic relationship but doesn't believe I have active GCA. " This really bothers me because I feel I've been labeled a royal pain in the arse: stubbornly, ignorantly refusing the treatment he could use to save my ungrateful life. He doesn't include the fact that ER doctors took me off fosomax due to esophagial spasms. He doesn't take the time to read and then acknowledge the reputable research in regard to proper tapers and headache presentations. He doesn't state that on the day of my TAB, I had no head pain at all, and the four days prior my entire head hurt-not just one side! It's as though all my realities with GCA are unimportant, figments of my imagination, or products of over excitement and anxiety. I'm stubborn and non compliant because instead of seeing yet another doctor id like to take advantage of the research and experience of others to regain my health rather than swallow toxic biologics.

It's like being in an abusive relationship, isn't it..... I need some truth.I need encouragement and need to hear I'm not at fault. Unless, that is, you all believe I am.

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No, you’re not at fault, it’s your body after all.

Totally agree on additional medication without further investigation (bones in particular); but I may have agreed to see other specialists just to rule out anything else - but I guess that means extra money.

I do think some get a bit upset if they think you are taking more notice of other sources rather than them.

Not sure of the way forward with him, sorry

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I had had a thorough cardiac evaluation and ct and mri scan of my head already. Never had headaches until gca ... I really do still believe if I had held at 10 mg for awhile, I would be doing well. He just kept trying to get me off from 10 mg. to 0 in three or four months. I felt really well at ten.

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Ok, well no need for referrals then.

As for 10mg to zero within 3 months - absolute rubbish - think he’s trying to make you the villain, whereas we know who it really is!

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Medical gaslighting, it's a thing!

And yes, ego's easily dented if we arm ourselves with information.

It's horrible seeing it in print, I had one write "she has a tendency to interpret her symptoms". Totally unecessary! (I had simply been explaining that my night sweats and weight loss may be due to perimenopause rather than anything sinister at the time!)

I have read this book by Maya Dusenbery over the last year "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick."

So may stories of this gaslighting. Men suffer too I guess, but to a lesser extent.

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Thanks for the book tip. I've just ordered it from Amazon.

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I'm going to get that. Thank you.

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some of the case studies will make your hair curl but for me, realising how this stuff is systemic, rather than personal was quite empowering!

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Thank you everyone for being here for me.

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Thank you for opening up this valuable discussion xxxx

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And now you are empowering us xxxxxxx

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Blurry do you know the term used by Mic? Gaslighting is a very good term. Look it up darling xxxx

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No, I don't. But I'll go look it up right now.

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I guess I've been gaslighted. Yes. " "GASSsssssLIGHTED!!!!!!!! "She roars.

( theatrics )

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I had to look it up too.

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Haha, I had to look up "gaslighting" too!

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Mic. So sorry this happened to you and THANK YOU for calling it what it bloody is. It’s outrageous xxxx

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How DARE we 'have a tendency to interpret [our] own symptoms' !!! FGS - this is ridiculous we do 'live' in our own bodies and some of us have even 'read' [how DARE we do that either - I have actually been told NOT to] The utter arrogance is beyond the imagination - but usually involves a pompous doctor who has a weak ego and STILL has traditional notions about a 'woman's place' and their own clearly superior 'intelligence' - and after all women don't (often) know their own 'minds' anyway and are notoriously unreliable with 'truth'. This was the same hierarchy that caused my mother to be misdiagnosed (she had GCA) and to lose eyesight - she was apparently just 'upset' or 'neurotic' and was given Valium for severe headaches etc.

Like it or not some medicos are dragging their feet and are unwilling to recognise we now live in an age where people are generally better educated and can have access to information about health and well-being which was never available to previous generations in such a scale and with such accessibility. OK we all know there is a lot of junk info about and that is why having 'some' education assists us to recognise that material from scientific studies & in peer reviewed journals or from other reputable organisations and institutions is preferable. HOWEVER this forum also indicates how people's individual experiences and discussions can assist us when attempting to understand and deal with some challenging aspects of our health and well-being.... not least the sometimes condescending attitudes of those who are MEANT to be helping us ... I personally wouldn't put up with that anymore - as it is enough to make you 'SICK- [ER] ' !!!

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I mentioned the forum once....never again. My Dr was quite dismissive. I wouldn't have managed without the advice I receive here. I wish you well; you need support and guidance through your illness - not stress. I hope you get sorted ASAP.

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What valuable information they're missing. What a tremendous opportunity to listen and therefore become a most excellent medical provider!

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What a pity. My dr was pleased and surprised when I told him about the forum.

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Doctor who finally diagnosed me suggested looking on this forum, gave me the link! She now leaves me to manage my own taper " because you seem quite well informed" and when I asked for dexascan, she booked it. Still didn't take her up on alendronic acid though 😋 Feel lucky that I feel she is on my side, even when we agree to disagree, unlike so many doctors you read about on here.

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You have found a treasure. If she's in Missouri, let me know please.

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Sorry, she is in Scotland 🤨 what a shame there aren't more like her. She's not perfect but who is! I don't use omeprazole either that was prescribed, milk or yogurt with pred works for me. She says I'll need it eventually, but we'll see 😉

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Blurry I call doctors like yours DIKTORS. For obvious reasons. Do not buy into this conceited twerp’s opinions. You are intelligent and TRYING TO TAKE RESPONSIBILITY FOR YOUR HEALTH. Which is what we should do.

Stuff him. Can you TRY to change doc? Xxxx

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I'm working on that. I'm waiting for call backs now. Insurance is a nightmare here in the United States unless you are wealthy. Which I'm not. They dictate where you can go and who you can see unless you have the means to pay cash. I have decided to pay cash at the vasculitis clinic...250.00 for a consult..No tests... and hope to walk out with a plan someone will work with me on. They are supposed to call me soon.

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I mentioned the research (link below) about calcium bioavailibility to a GP - she wouldn't listen - just gave me a lecture about "you have to watch what you read on the internet", "we should only look at meta-analysis, peer-reviewed research", blah blah.... I let her run out of steam, then said "It IS a meta-analysis that appeared in the American Journal of Therapeutics", to which she replied, "That's American - it's not relevant to the NHS".

So, yes... we should know our place and stop interfering with the experts! 😉😆

europepmc.org/abstract/med/...

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You're my hero!

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"That's American - it's not relevant to the NHS"

Is disease racist then?

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Apparently yes, in this part of the world! ;-)

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That's one of today's "I beg your pardon?" moments!!!!!

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Maybe that Doctor had found some new discovery no other doctor knows about , and believes diseases are like birds and flowers with varieties that will only flower in specific countries.

If so , perhaps we should all start moving around the world to new places so our

" one country only" versions of GCA/ PMR will just die out of their own accord in an unsuitable enviroment😂😂

Booking a flight to Guadeloupe as we speak !!

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Good Lord Blurry62, you are not wrong. Your Rheumatologist would have found the vocal majority on here making all the same decisions you have. Mind you I might have agreed to the Neurologist, no harm in that being cleared up and I have agreed to see an Endocrinologist in case my sluggish Adrenals have another cause. The drugs you have been offered have significant downsides and it’s up to the intelligent patient to weigh up the pros and cons for herself.

I would be seeking another Rheumatologist with a less fragile ego.

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I kept thinking, why would I swallow those dangerous medications on your advisement when you don't even understand my disease?

Why would a doctor even do that? Honestly, I don't remember him mentioning an endocrinologist. He did mention checking hormones one visit and sent me for labs: thought he was checking them. Guess not.

"Sigh"

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Sorry wasn’t it for steroid withdrawal?

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He didn't say that at the time. Maybe he was thinking it -- just not saying it out loud. I'd complained about persistent head pain, and he said " we should check your hormone levels." Again, that's what I thought was happening.

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I think you need to be congratulated for being the best patient advocate for yourself and here are the medals🎖️🏅 It's sad when people are put in positions of influence beyond their mental acumen, I like DC's diktors 😂

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I was really depressed when I slumped into bed just now. I've let this clinic note get to me. Like I flunked out or suffered a character smear.

I don't feel that way now because you and others here have ministered to my weary spirit. I'VE BEEN EMBRACED IN A GROUP HUG !

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Careful, you could get a group smother 🤣 We're good like that xx

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They do get you down when you read those comments.

But your reaction proves your a far more intelligent , sensitive and we'll informed person than your Doctor.

Kick it out of your mind , and when you are proved right, as you will be , politely make the git swallow their words preferably with a side order of kick up pants.

Hugs , Bee x

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:) Thanks

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How awful. Like he’s setting you up to flare with his tapering expectations. Hard to read such a notation made out of context.,

I had to “fire” my rheumy after 3 appointments that got progressively worse. In the end she called back and apologized but I just can’t work with the person who thinks they are superior and pushed biological on me from the very first appointment. The final straw was when she out and out denied increasing my pred after I flared following her “ textbook taper”. The stress seeing her made my blood pressure go up and created anxiety.

Thankfully my GP is great, and agreed to oversee me and refer me to another rheumy of my choosing if I like. I understand such options may not be possible in the US, but is there anyway to see a different rheumy? Don’t feel pressured to follow his taper, especially if you are experiencing symptoms. And you have a right to refuse biologics. Advocating for your health can be challenging, but it’s vital. Hang in there!

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I had to fire the vicar of mums funeral....but that's a whole new story 🤣

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We do what we need to do!!

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I wished I could have done that - but I was just a visitor ...

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Good morning! :) please translate this for me. I've no clue what you're discussing and don't want to miss anything.

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Oh wait..... I got it.....got.. .

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You literally "fired the vicar who was to perform your mother's wedding. " ;) That took courage. We always find the strength to fight for our families, don't we.

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I had to fire the funeral vicar a day before the service, fairly mind blowing but on the up side, mum would have loved the drama 😎

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Bloody hell Angie that was a tough gig. Poor darling. The girls next door had similar. They are a Greek family. Yaya ( grandma) was dying at home of liver cancer and girls were nursing her. Old lady had ONE REQUEST Would priest please come and pray with her? The bastard wouldn't come. Then at the funeral he used the opportunity to lecture the rest of the family on their non appearance at church and told them they were destined for hell,

He should have been sacked BY THE CHURCH.

what's with these guys????????

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I always feel these sorts may well be surprised when they discover which if the options they end up in and who is there with them - whichever it is!

On the whole, I think I prefer the thought of the downstairs accommodation ...

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there is no point fighting with doctors.. If you are not happy, change to different one. After all it is YOU that suffers, not him/her.

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Unfortunately , not that easy on the NHS , a closed club that stand behind their own.

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My excellent plan ! Conceited or what .

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If it were me Blurry62 I would be writing a very calm note to my primary carer, GP in the UK, setting out, for the record, my take on what has occurred. I would ask for it to be placed on my file. Rheumy's come and go but patient records don't.

Don't write in anger though! Just calmly set out your position.

This is only a suggestion, but I think it's the action I would take having seen such a dismissive arrogant note

Meanwhile everyone on here is at your back... 🌹

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Yes I was thinking she needs to write a note to put in her Drs file. Imaginery or real. Get your power back. You aren't a naughty child.

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That's a fabulous suggestion. I'm going to do that.

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👍🙂

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Yes I agree with Oxford8. I hate to see those sort of things on file especially when it is completely one sided. I had on my notes ( accessible on the internet) that I had just not turned up for a flu jab. I had previously rung and had rearranged the flu jab in plenty of time. I asked for it to be removed from my notes and the receptionist said she didn’t think it could be done!! I did suggest going in to see the person who inputted the info and within a couple of days the comment disappeared!! Now I see on my notes in RED that a medication request not approved ( for Amitriptyline increase which had been suggested by GP) I received the medication, no problem but this is now on my notes and it irritates me so I will go in again!! Agree with everyone to seek alternative Rheumy. X

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Reminds me of school days and of ones permanent record doesn't it?

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here in usa you can GET your permanent record if you went to public school. I got mine and 5th grade teacher said Looks like a boy. Acts like a boy. The other children seem to like her. hahahahahahah. and all kinds of entertaining things they could NEVER say today! Those records no longer exist today. Teachers would be sued. I came from a box checked NOT normal family. LOVED it ALL! The one thing that I was TOLD would be on my permanent record ...my throwing oranges out the window at the boys gym class...was not!

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I know just how you feel, I have come to dread visits to rheumy as she never shows the least empathy. Gaslighting is the word indeed.

" You do not have active GCA " is repeated regularly, although after my last referral by her to top specialist who at least said I had had it to start with she laid off for one consultation.

The latest is a referral to physiotherapy for a pain in the neck, which I have never had and the physio could find no cause for! I conclude that notes said I was pain in neck not had pain in neck!

The only difference between you and me is that I have taken everything prescribed, and a fat lot of good much of it has been! I think she has assumed that I haven't "complied".

So you just can't win.

I can only say that after 3 and a half years my GCA symptoms are getting better now I am on azathioprine and have managed yo reduce pred by about 1 mg a month. This reassures me that the GCA was/is real. Of course the azathioprine may have nothing to do with it, GCA does eventually go we are told.

So again you just can't win!

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Wonder which poor sod with a pain in the neck DIDN'T get a referral to the physio?

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Hi there - you know your own body. May I suggest that you follow my lead when my rheumy was being less than helpful. I patiently wrote everything down in a letter to him. Pointing out that what he said to me and I said to him in clinic was completely different to his written reports to my GP. Result? I received an appointment to see him the following week - so what you may say! But I had been trying for months to get said appointment. He backed off at the appointment and made arrangements for other tests [ possible arthritis problems I had brought up before and he dismissed]. At my most recent meeting he wanted me to start a new med I refused and gave him reasons. Strange I haven't received yhe promised follow up appointment to discuss test results. As regards the fosamax - I had been taking it for 4 years and he kept saying I didn't need a bone density scan yet [although I had never had one]. My GP arranged for the scan result = super bone density no need for fosamax or calcium or vit.D. Stick your guns. Good luck xxx

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Oh boy you are definitely not at fault here. Sorry any doctor has made this comment to a patient. The reason he takes offence at this forum is because he knows bloody fine well we 're more experienced in pmr/the than he is. Love and hugs.

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No you are not at fault and he is an ass. plain and simple.

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How does he know it is "excellent"? It is your body.

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So sorry you got abused by the one who should be supporting and helping you Blurry! I had a similarly bad experience with my rheumatologist last week and have been too demoralized to post about it yet. Visiting her causes my blood pressure pressure to rise, (white coat syndrome), and symptoms to increase.

I’m in the U.S. too and still looking for a better doctor. This one is my second rheumatologist after the first one dismissed me for non-compliance.

Hope you find a good one soon! You haven’t done anything wrong, you’re just trying to take care of yourself. ❤️

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I too have GCA (lost an eye to it about 16 months ago). I am more fortunate than you with my rheumatologist these days after a bumpy start. My problems are with the cardiologist. After some heart-searching, I find that the best way of dealing with him is to listen to the orders he barks out - quietly digest them - and then do what I think best.. I have had heart failure for 18years - ever since a heart attack and I am pretty confident in handling it at the moment.

All this means that next time I see the cardio man, I have to lie to him regarding whether I have obeyed all instructions - but that's OK

Be sensible about it. Listen to the instructions etc. and then overlay it with what you have learned elsewhere using your experience of you. Above all - don't let them upset you.

Arthur

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I'm sorry for your trouble. I'm sad you lost your eye. Thank you for sharing your experience here. I understand. You grow so weary of fighting the very person who is supposed to be helping you move into health. I do the same thing: sit, listen, and go to war best you can. Fortunately, there are people who get this. They are here and also in our families and close friends.

Is your heart failure due to the GCA? They checked my heart at time of diagnoses , and I've listened to research from the Cleveland Clinic on youtube saying gca patients should have their aortas monitored for damage/dissection.

Thank you for your good advice.

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Hello Blurry

Sorry for the delay in coming back.

No - I'm pretty sure that my heart attack is not connected to my GCA. It happened about 18 years ago. I'm sure that my horrid shortness of breath IS connected to heavy doses of prednisolone, since that's exactly when it came upon me.

Yes - you definitely should have your aorta checked, given your condition. I had mine looked-at. So far - so good.

Good Luck Blurry

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It makes me pretty angry to read this Blurry62 and I've replied (maybe ranted) above to Mic67 about what I think anyway - YOU are MOST CERTAINLY NOT at 'fault' - these attitudes are really archaic - or should be - and quite OUTRAGEOUS - how DARE you have insight into your own 'health' !!!!??? Actually I am now laughing - because if I wasn't I'd be crying - and yes there are great similarities to an abusive relationship - all about weak egos and 'power and control' which we (or our respective govts) are meant to keep paying for .... !!?

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Oh Rimmy I hate to see you upset darling xxxx

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Remember. He is NOT a doctor. He is a DIKTOR.

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