The details of the drugs which should not be taken alongside Paxlovid are given in the article. I would hope that anyone making the phone calls triaging the patients would know but in my personal experience - it is better to be aware yourself and ask the question.
Perhaps. I'm interested in linguistics and that's why I looked it up as I'd only ever understood it to have positive connotations so I was curious about the negative ones.
Oooh - are you? I look all sorts of things up just for the fun of it I used to get really annoyed about what felt like misuse of language until I lived over here and saw how language develops. Unless it changes it dies - and that is even worse.
I really hadn't a clue what it meant. I've never used it. But now I believe it originated in US gospel churches when names of people were "shouted out" during prayers.
Sorry it is a modern expression that youngsters use, I was trying and failing to be funny. It means disapproving I recently discovered. It is hard to keep up. However a big shout out is a good thing, like a cheer.
I looked up the definition of the term in the Chambers Dictionary and there is no mention in their definition of the term "shout out" in the context used here.
Thanks Prunus. I had no idea what it meant in this context either. I've completely misinterpreted the current meaning which apparently comes from US gospel churches when they "shout out" people's names during prayers...or something like that.
Dictionaries are notorious for being a long way behind in the changing use of a language so not surprising. I don't ever use a single dictionary - needing to know about a word always sends me down a rabbit hole!!!
That's how I found that shout out originated in USA gospel churches. I totally agree about languages changing. We'll probably all be using could of instead of could've as do many people use it🤷😂
Could not agree more. Years ago when I was doing reports I used to sit with a dictionary beside me. We have several in our house and have to hunt around between them at times. It's the same with dialect. Having lived in different parts of the country I have acquired words in my vocabulary peculiar to that place.
Same here, Prunus, I lived in France for many years and although my French is fluent, I never mastered the French for PMR! Which is pseudopolyarthrite rhizomélique!
How revolting - comes a close second to senile rheumatic gout that was the original moniker! So easy here - polymyalgia rheumatica, pronounced a little bit differently!
It is awful, makes you feel like something that should be planted in the soil! So glad it's no longer senile rheumatic gout! I would be so reluctant to tell people what SRG stood for!!
I have an interesting range of dialect words too. I finally chucked my paper dictionaries - the internet was so much more useful, especially for comparing options.
I intended to say I have sent the definition from the Chambers to PMRPro if you are interested because there is no mention there of it being used like it has been used here.
I have a fridge full and now I know the LVV is still live and attacking my Aorta it motivates me to press on. I have also been fast tracked for a Colonoscopy on Saturday, having had lower abdominal pain plus IBS and UTI symptoms for 3 months on-going. So much for being dismissed by my GP! Thanks for your kind wishes. I am trying my husband’s patience with my crossness, poor man!
I am used to being told that tests are clear. This must be large vessel Vasculitis now affecting my Aorta. It just needs monitoring at this stage. I need the doctor to explain. I only just got the letter.
I had something similar years ago and it wasn’t as bad as I thought when explained to me but that doesn’t help the shock it instills in us when getting that letter. What next with this illness. Fingers crossed for you. 🌺
I had the same diagnosis (LVV) over a year ago. It was a shock as I was asymptomatic but showed up on ultrasound scan. I've had very little information and have spent considerable time on t'internet with no real answers. I have an appointment for an ECG at my surgery this Thursday which I asked for as I've experienced chest flutters periodically for some months. My face to face appointment is due to take place on the 14th April -fingers crossed: hospital is under pressure-and I hope to find out more. Will report back.
PS. When I rang my surgery to ask for the ECG app't I was prepared for dealing with the receptionist and decided I would bombard her with medical terminology 😏. When she asked what the problem was I said, "I'm on long-term Prednisolone for Polymyalgia Rheumatica and more recently Leflunomide for Giant cell/large vessel vasculitis with Aortitis diagnosed and I've been having heart flutters....." I was booked in with no further questions asked.
Yes this is how we have to be these days, polite but firmly insistent. Both my cardiac tests and my Colonoscopy were aimed for.I spent years worrying about my eyes and it was going on in my Aorta. Pred head doesn’t make me listen enough, if I was told of the possibility, I can’t remember. Just part of the raft of routine tests initially.I just know that my last Scan of the Aorta was normal, pre-pandemic. I still don’t know the implications, just monitoring I think, no drugs. My only symptom is breathlessness and that’s not as bad as it was.
I agree with your Pred head comment. I try to concentrate hard during consultations and ask any relevant questions but by the time I get home I've retained only part of what's been said and resort to hoping that the follow-up letter will fill the gaps 😏.I suppose we have to at least be grateful that we've had our diagnoses and trust that we'll be closely monitored with appropriate treatment if needed. We have keep in mind that we have the right to question and to be afforded respect and that should be mutual.
I'll just add that I'm not as brave as a make myself out to be 😂😂.
Dr Sarah Mackie copies me in to a summary of my latest appointment - accurate and really helpful. She sends it to the GP. Unfortunately they do not seem to return the compliment, so I have emailed her about the Cardiology findings and the up and coming Colonoscopy. Just had a blood test initiated by my Endocrinologist to measure Pred uptake. 2 hours after taking Pred. then two hours after that. He contacted me, still counting me as a patient after the pre- pandemic Synacthen Test. It’s a lot to keep track of - the hairdresser feels too much on top 😉. Tempted to cancel but look a wreck.You can see that if the patient is not on their toes things could fall down the cracks. Hence my gratitude for PMRPro’s post on the possible incompatibility with anti virals for Covid and drugs our group is quite likely to be on.
Sorry for the head sort and no, I’m not brave either. Xx kindest wishes Jane.
Always confirm they will send you a copy letter - when l had Cancer l was treated for some of my treatment ‘over the border’ But l have a full set of notes so it was brilliant when l moved house….
Hope you get to the bottom of all this - you must be throughly fed up - l am at the moment too - l can’t even pick ‘complaint of the day’ there are far too many contenders 🤦🏻
I have a huge box file with 6 years of letters in chronological order. Apart from Sarah, keeping me informed has been by telephone and two deadly sounding lines from the Cardiologist, for over 2 years. The worst culprit is the GP surgery, I seem to be doing all the progress chasing that would have been their responsibility. I dislike the convoluted hospital appointment letter system where you have to tap in a code from your phone to read it. In fact my expensive iPhone is only used for medical things now. However do some people manage? I am an ex civil servant and I struggle. My Gastroenterologist seems to think I am type 2 diabetic. I was borderline once and rectified it with diet I thought. If I am - why has nobody told me?Sorry you opened the floodgates. I am sorry that you probably have an even worse story. Yet you find time to organise FAQs for us - incredible! Thank you! Thank you!
How do others manage? A bit like me I suspect - I don't have any UK communications saved up but I also don't have the ones here neatly filed! Which I really should. Not that they will be any use if I come back to the UK - all in German or Italian. Italian doesn't help me either ...
Your brain is a very efficient, bilingual filing system in itself and we all benefit from it. I have a pretty box.Do go to that mountain. I keep thinking about it. 🌷
A problem shared can make you feel a bit better - l need a good laugh - my friend is back from the Caribbean soon so will go up to see her & have a good catch up! I’ve reduced my Pred & sometimes l think that kicks everything else off….
But Hey Hoe - Get Up - Show Up & Never Give Up!
As my Mother used to say there’s always someone worse off than yourself!
Thank you for the kind wishes and don't be sorry. I'm a believer in opening the flood gates: releases the pressure 🙂.You have a gem in Dr.SM. She's definitely a humane human and the endo too.
I file every bit of paperwork to do with my PMR/LVV (not much of the latter though) and also write in a diary details of every phone call including the name of practice staff I speak to at my surgery... I ask for the name if it's not offered. It sounds a bit OTT but it's my way of having some control and has proved a handy system in the past. I don't find it a bother to do.
You take care and do get your hair done- you deserve a bit of pampering - just don't let anyone breathe over you 😂😂. My hairdresser still wears a mask and so do I: I just remove one loop at a time when she trims around the ear'oles. ✂️ xx
Great that you managed to avoid having severe symptoms Dad2Cue, positive result or not. Must have been a relief for all of you. I've had the email and the PCR test from NHS but I'm going down to 5mg next week, so I would guess unlikely to be offered the antivirals, but it helps to know that meds might have to be adjusted if antivirals are ever on the table.
Many thanks for this to KellyinTexas and PMRpro I'm on two of these, although at such a low dose it wouldn't be a problem stopping them if needed. Am in agreement with pro on the other point.
I've looked up the definition of the term "shout out" in the Chambers Dictionary and it says it is a "loud cry; a call ; a call for a round of drinks; a term used by the emergency services for a call out".
I'm loving all the responses on the 'shout out' terminology 😁 I knew what you meant but not sure if it's just cos I've heard it before or what. But there are so many different phrases and new words created goodness where you'd find true definitions 🤣🤣🤣Some of the young people expressions are totally off the scale and no hope of understanding them!
I’m currently taking Paxlovid for Covid. I was alarmed when I read the leaflet that comes with them as I’m taking 5 of the drugs mentioned in the ‘talk to your doctor if you’re taking any of the following’ section (I’m not taking any cardiac ones). I called my gp and he went through it all with me whilst looking up the contraindications online. The only one of my 5 that he was concerned about was amlodipine and his advice was to monitor my bp and if it drops below 110/60 to halve my dose. So far it has been fine.
Thanks for sharing that. I have checked the list of contraindicated drugs and I am taking 2 of them, Atorvastatin and Losartan. Doesn't life get complicated! M
I just checked if this is used in the UK as the info came from Kelly in Texas. It is , there is a short instruction to check interactions. gov.uk/government/news/oral....
Thank you for this enormously helpful link Dad2Cue. I am almost sure that I have Psoriatic Arthritis. I tick almost all of the boxes and have symptoms that I was previously unaware of that are part of this condition. I will ensure that all my growing team of consultants are aware of this probable key to the whole thing, even the abdominal symptoms and possibly the eye symptoms. Again I am so grateful for your research.
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