Thought this was an interesting article... wouldn't it be great if ultrasounds became the standard and most reliable source for monitoring and tracking GCA, in all patients, not just those paring their corticosteroids with tocilizumab.
The more tracking/monitoring, the more data... the more data, the more answers!
Thanks for posting this M - always interesting to see such research X
Interesting article. I believe in the UK we have a shortage of appropriately trained technicians although it is known that ultrasound would be a non invasive way of diagnosing and tracking the progress of GCA and other Giant Cell Arteritis. Perhaps we need a campaign, here in the UK?
Oh was that a pig I just saw flying by?
Hahahahaha. 🐷
The pigs are filling the skies mehtinks...😕
I must have been lucky US was one of the first things they did at my initial consultation with Rheumy and was positive for GCA. I had a TAB 3 days later which came back negative.
I agree the profile needs to be raised but there is a shortage of appropriately trained doctors Unfortunately it’s going to be a lottery wherever you happen to be.
Thanks Mel xxx
Doesn't have to be a doctor at least - most US is done by technologists in the UK. Still a costly exercise to make it universally available. And there is a shortage of staff anyway ...
****Please disregard this comment as I misunderstood**** Hmmm. as I understood it (but I could be dead wrong) it's the ridiculously low cost of corticosteroids that keeps the big drug companies and the research teams from looking at alternative treatments for PMR & GCA, as it's likely they'd be more expensive. Also since these illnesses primarily impact "older" people... there's not a lot of urgency or incentive to diagnose, treat, cure. That, what I understood anyway. 🤷🏻♀️
See below
It is certainly one aspect of it all.
Yes, but they are cheap as chips compared to other medication.
Less than £1 ((UK Sterling) for a pack of 28
Compared to £12K per year for Actemra - just the cost of the drug.
Doesnt it have to be a consultant prescribing actemra so the cost goes up.again!
Yes - and as I just said above, all the things mentioned apply for Actemra, or any of the DMARDs in fact, too.
I have had almost no extra costs due to pred - just the odd blood test, but most of my extra costs have been due to the autoimmune illness causing atrial fibrillation and managing that and the bradycardia that caused asystoles by inserting a pacemaker. The a/f happened long before I had ever taken a single tablet of pred.
Pred is not a high cost drug.
The implication is pred does so much damage to us that we end up costing loads. I don't agree. Autoimmune conditions like to travel in pairs or groups. So I have lots of things that have cost more money and time that pre date pmr and pred by years. If pred is used responsibly, not yoyo-ed or reduced too fast and lifestyle and dietary changes are made most of the effects CAN be ameliorated when used for PMR. Some conditions or pred users seem to use pred in more arbitrary ways due to rhe nature of the illness. Sometimes comparing pred use for different conditions is like comparing apples to oranges. 🍏🍊
And none of that applies for, for example, Actemra?
Or any other illness/drug.
My late hubby’s tablets for coronary problems (which led to diabetes - so even more drugs) certainly cost a lot more than my steroids for GCA.
Add in the cost of his triple bypass compared to my single cataract - and I know who was “high maintenance “.
After over 10 years I have no sign of cataracts or many other so-called pred adverse effects - they are not inevitable and many patients in the age group would develop some of them anyway. As Matteson's group's work found:
medpagetoday.org/rheumatolo...
No Special Risks Seen with Long-Term Steroids in Polymyalgia Rheumatica
-One exception: cataracts
And the relatively low cost op saves the patient quite a bit of money when they no longer have to pay for new specs every so often!
Ahhhh, sorry I misunderstood.
You can say that about ANY drug..... And certainly when the drug has been taken in large amounts for ages then small amounts. Etc. Not everyone gets the unintended effect of all drugs. I am sure that cancer treatment often feels worse than the disease (and yes I have seen relatives go through pointless treatment that may have extended life, but was it a life worth living?? ).
In my view, and my knowledge of the health system here in the UK, there is no way in the next few years that a drug as expensive as actemra or any other biologic meds that are used to treat other inflammatory conditions like RA will be used as front line treatment. There are hoops to get jumped through for actemra to be the treatment of GCA.... PMR is way in the back of the queue. After all, once treated with pred properly, it stops the inflammation that can cause tbe vascular damage. It's self limiting so why would it be seen as a priority? Of course we suffer for a while but people do recover.. To be honest if I got a chance to get a drug that cost 12k plus, I would rather the money go to GCA , cancer sufferers or children with a serious illnesses, rather than me with my fatigue and pain.
Another factor is non attendance of appts. Tbey cost a fortune... So there might be more money to share around . Regardless of this I prefer the NHS to other systems. It is different from say in the USA. The ageing population will need to be supported somehow. I don't know why this discussion goes on and on. It's like a slightly warped record coming round just in time to scare newbies. During this time I haven't pinned my ontological self on anything but sleep pills. So I will use mine despite the theorists and Dr's who don't like it, so try and stop me with scary stories about a shorter lives and bodies riddled with side effects. I read them all and decided if I didn't sleep for weeks on end . I don't want to live. If I live 10yrs it could be too long with pain fatigue and insomnia. The point is everyone has to make a Personal choice. And only by looking at all the evidence and reported unwanted effects or take it on faith.
And that also applies to Actemra when used for GCA. Despite relief of symptoms, there is evidence that in some the disease process in GCA continues unnoticed despite the patient being free of symptoms.
OTOH, despite 10 years on pred I have no skin problems, there are no signs I am on pred, I was Cushingoid 6 years ago while on methyl pred but am no longer. All other assessments of adverse effects are unchanged whether internal or external. At least after 60 years there isn't a lot to be learned about pred.
No-one, including me, is saying one is "better" than the other. That didn't appear to be the discussion here.
Why do doctors keep refering to 'temporal' arteritis instead of using the term 'giant cell' arteritis?
does anyone else with giant cell arteritis have vertigo?IL-6 blockers may usher in "new era" of giant cell arteritis treatment
living with Giant Cell Arteritis with PMR and large doses of Prednisone.
HELP #3 Day in Hospital Possible Giant Cell Arteritis Biopsy Tomorrow. San Antonio Rose
