I've watched this Cleveland Clinic video 3 times now... it's hard work (for me!) but after the 3rd time (and looking up a lot of the medical terms) some of it's sinking in.
At 29:05 he talks about an increased percentage rate of thoracic aortic aneurysms, in patients who have had GCA... and how the longer you follow up on these patients, the more medical complications you discover in them!!! Great!!!! ...so even when you're done with it, you're not done with the residual effects of it. How nice to know.
Yes, it can make grim ‘reading’ and some people do go that worst case route but any disease is like that, even the common cold. I nearly drove myself insane when I had cancer worrying about what ifs with everything from disease trajectory to treatments. The trick is to know, then park it and tread your own path in the here and now, living healthily and self nurturing. With the cancer, it felt like a waste of life worrying I might end up like the person next to me in clinic. Cross that bridge IF you get to it; nothing’s a foregone conclusion. I’m a great fan of doing tai chi breathing exercises that I’ve adapted into my own little routine because I like the movements and i think affirmations or statements during it. At first on higher doses it felt like trying to calm runaway stallions but it got easier to ground myself and ‘get out of my head’.
I usually don't worry (or even given a second thought to) "what if," but it's interesting that neither my doctor nor my Rheumy have ever mentioned possible complications or potential future health issues... I guess, they figure, what we don't know can't hurt us.
I'm actually happy I saw this, because I am 64 now, and the 10 year increased incidence of thoracic aortic aneurysms, jumps. So the way I look at it... I need to LIVE this glorious, life while I'm able! Woooooooo Hoooooooo!
Did it strike you mamici1, just how much you have already know about your disease? I got all the treatment and other options right. Makes me wish I’d gone into medicine, it’s so interesting to me. I wish science had grabbed me at an early age, I blame Miss Frear for putting me off.
It just underlines how important being an informed patient is, especially when some of our doctors don’t even get off the starting blocks with this.
Also God bless steroids, as flawed as they are.
Thanks for posting! Go for a walk along the seafront you lucky girl. 🍀
Yes, that's true... I have learned a lot!!!!! In a 6 month period of time. Good on me!!!! ; )
My Dad had gone to a fortune teller, 100 years ago (we're Sicilian what can I say?) and she said that I should be a "Nurse." At the time, I fainted at the sight of blood... so hat was a "No Go." However, since retiring from Amex, I have worked at a Nursing Home, a hospital and a hospice and loved all three jobs!!! I'd LOVE to be a nurse or a doctor!!
I have been pondering on all the self limiting things we say to ourselves.
I love Sicily, I went one June and there were many beautiful brides being photographed at the sea front beneath my balcony, where I used to watch them. One enthusiastic father of the bride threw me an exuberant kiss. You are a noisy lot though, always firing guns off at religious festivals and lighting firework rockets with your cigars.
Interesting that a year in when they re-tested those patients that had produced a positive TAB, over 40% still came back as positive! Also that 30-40% (one instance of 47% -and surely that’s much too high) of GCA patients relapsed within the first 12months.
One of his first slides commented on the 10% taper that we always quote, but in the wider world of Rheumatology that seems to be ignored!
Perhaps they should be looking at slower taper regimens within the first 12months - instead of trying to steamroller patients to decrease ASAP!
Thanks Melissa very interesting - and I agree with DL's observations - but as far as GCA being deemed a 'chronic' perhaps indefinite illness I will still remain an optimist because the alternative just doesn't appeal. Also given we generally 'get' PMR/GCA in a later part of our lives and that many people have 'co-morbities' (I hate that term) it is likely that something else will 'do us in' anyway after a decade or 'few' - it's just called I believe 'life and death'.
It is really also unsurprising that this vasculitis lingers on - possibly in a 'remission' form - as reading here and on other forums it appears some people seem to 'get it back' out of the blue - this HAS made me wonder about it disappearing completely - even if we make it to 'zero' pred. But regardless - and beyond generalisations - even 'scientific' ones - I still think we are all unique and some will always go on to do 'better' than others (sadly). The main thing in the face of uncertainty is to stay positive and 'be' in the moment or the day as much as we can - because PMR/GCA or not -that is all any of us has in the end. So I hope you have a very pleasant day Melissa - and the same to everyone else here !!
You maybe be an optimist, a positive realist, a gentle warrior, a doer of good deeds, a fighter of noble causes, an activist, a peacenik, a hippie... but a perpetual Pollyanna? Nope, I don't see it.
I was taken back when I watched/listened to the presentation, as I was not expecting such "doom and gloom." I hadn't looked deep enough into the impacts of the diseases before.
You are right about staying positive (I would add however, while {and when necessary} acknowledging, embracing and ranting about any negative feelings you may have... because better out than in!) and "being in" and embracing the moment as much as we can. That is all we are sure of... NOW.
We cannot let these diseases define who we are, which is difficult as they seem to take over every aspect of our lives, but we must keep fighting and allow our true self to shine!
Thank you, very interesting and informative but scary. Thank you for doing all the research. I had to get out my medical dictionary to listen to it but it was worth it. Thanks again.
It is something we have talked about in the past on the forums - but part of the problem for the charities is that if you talk about it, it is another scary factor for newbies who are still reeling from the diagnosis in the first place. Maybe we should add it in more often.
What worries me more is the rather blasee attitide from some doctors - the risk of stroke or cardiac event is 3 times higher in the first year than if you don't have GCA. One top rheumy said to me "it is still a very low risk" - yes, but it is higher in an age group where it is rising anyway. One lady was under Southend and intially told that she didn't have GCA as the TAB was negative (as we know not true at all) by someone who has co-written a paper about the spectrum of PMR/LVV/GCA and who you might imagine would know rather better - she persisted because she felt so ill and was sent for a PET scan - she was lit up like a christmas tree. The consultant didn't even tell her to her face - a minion was sent with the prescription for high dose pred, "see you in 6 months". She actually asked for monitoring for cardiac risk which was denied as not necessary. She had a heart attack. Now she is under a vasculitis expert in London who was visibly shocked at her previous management.
As if rheumies weren't somewhat uninformed - in the UK now it seems next to impossible to even SEE a rheumy, certainly in some areas, unless you can go privately. And we all know the problems with GPs ...
Yes, I see where it would be a dilemma, especially for a charity or any organisation, who are trying to inform and get support/donations from people... you certainly don't want to scare them off!
However, I, as someone who suffers from PMR/GCA, WANT to know the risks and potential dangers that are associated with these illnesses! I want to know if my life might be cut short as a result of the diseases or of corticosteroid treatment... I feel I could make more informed decisions about my treatment (i.e. should I consider Actemra?) and it would help me make better decisions in general if I knew!
If there's a risk that my "normal" life span might be potentially reduced, because of these diseases (or because of my long term steroid "abuse,") I might choose to live a totally different life!!! My Rheumy swept my question under the rug and implied that I was not at any greater risk of dying any earlier, than a person of my similar demographics, just because I have PMR/GCA.
I think PMR/GCA charities and support organisations have an obligation to make this type of information and associated statistics available to me!
How they do that and not scare the "newbies," I don't know.
Yes - I also WANT to know the bad sides as well as the good, if I have a terminal illness I want to know the prognosis. But there are many patients who DON'T want to know the, perhaps unpleasant, truth. When my husband had cancer the first time, despite being a healthcare professional, he didn't want to know anything - he left that to me. Last year, with prostate cancer, he did his own research. The difference I think is that the first time it was very aggressive and llife-threatening in the short term. PC is perceived as soething you die with rather than of - though that isn't entirely true. So the patient also feels differently about it.
But while there is an increased risk for the cardiovascular events, there is no evidence that either PMR or GCA result in early death so there isn't a problem worth worrying about there. You may have increased co-morbidities, making life perhaps less healthy and requiring different management - but that is a different thing.
Yup, I do see your point. ...but I already have "genes" that predispose me to an increased risk of a cardiovascular event, so now (it seems) I have a second layer of risk.
And I actually don't worry about death at all. I'm at peace with that next phase of my life's journey.... however, I do want to get the most out of whatever time I have left.
If that time (or my quality of life) may be potentially interrupted by a fatal/non-fatal cardiovascular event, caused by the use of corticosteroids or an auto-immune disease, maybe I should get the skydiving, Mount Everest, and George Clooney done, sooner rather than later.
Just sayin...
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For a moment my eyes mixed up mount Everest and George Clooney and I thought you said mount George Clooney....good luck!!
If you look at sites that discuss CRP they talk about increased risk of cardiovascular disease at 6 and above. But as you will note above...my reading skills are often far from perfect.
I think my blood pressure, cholesterol along with diabetes indicates a shortened life. I have made peace with that in many ways. I go for quality of life regardless of anything. My quality is based on me living a relatively stress free life and seeing lots of nature and spending time with friends and family. . The main thing on my bucket list is getting to the Arctic circle to see the Northern lights. At least I can do that on a cruise. I know my body will never allow me to walk far especially on unclibes so all those things given up.
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Yeah... I think you read that correctly!
You're right, always strive for the "best" quality of life regardless... I could get hit by a bus crossing the street this afternoon (while daydreaming about George Clooney!).
Good luck with the cruise and seeing the Northern Lights from the Arctic Circle!!!!! My real Bucket List dream is Nepal!
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Is it a flare or snething else , so much pain 
does half a mg make so much difference 
So much weight gain, moonface and facial hair
Quote that made me think of this forum we all appreciate so much.
