GCA PMR Panel From EULAR2020 - Rheumnow Podcast

[Phoenix51]

Dr Sarah Mackie, Dr David Liew et al..

twitter.com/vasculitides/st...

[PMRpro Ambassador]

Thanks!

[herdysheep]

I look forward to reading the views of the more learned/experienced amongst us! I tried to listen but it was bit beyond me.

[Phoenix51]

And here’s a link to the video if you are a more visual learner ! About 10 minutes in the discussion centres around PMR patients and those who go on to develop GCA

rheumnow.com/videos

[DorsetLady PMRGCAuk volunteer]

It’s very interesting - but until all patients are prescribed tocilizumab or similar - which is highly unlikely for most on here - we are stuck with steroids.

As for imaging PMR patients to ascertain whether they are likely to develop GCA, that would be good, but only likely to happen in major hospitals - budgeters allowing, of course.

What would be more useful is for all Rheumies and GPs to make PMR patients aware of the signs of GCA.

Hopefully all the subjects discussed could, and will make life easier for those to come, but as with all things it comes down to finance, and the will of the experts to fight for ‘their” pet project.

[Phoenix51 in reply to DorsetLady]

I agree about raising awareness and the other way too - medics to make GCA patients aware of PMR

[DorsetLady PMRGCAuk volunteer in reply to Phoenix51]

I agree, but see two extracts from NICE’s site - first from PMR Info, second from GCA info -

“GCA and PMR commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA, particularly if left untreated”

“About 15–20% of people with PMR develop GCA,

and 40–50% of people with GCA have symptoms of PMR [Ameer, 2014; Matteson, 2017; BMJ Best Practice, 2018]”.

Which I read (rightly or wrongly) from the wording that at diagnosis many with GCA already have PMR - it does not necessarily develop subsequently.

Obviously it might, but from posts on here is it less common than the other way around.

Plus if you are on GCA doses of Pred, your PMR will be controlled anyway- and you may not realise you even have it.

[123mossie]

Very interesting especially the comment that people with pmr probably have sub clinical gca!

Much concern re steroid toxicity, no wonder gps are keen to get us off.

[PMRpro Ambassador]

I finally got round to listening before bed last night.

Their opinions were quite justifiable but totally unrealistic - I certainly don't think pred is perfect but they were only looking at one side of a story that has several faces. I do think it is time they involved the main stakeholders in their deliberations!

I was pleased to hear them express their support for the idea that PMR is NOT a simple, short term disorder and that a lot of us possibly/probably have more than "just" PMR. Maybe more acceptance of and publicity for that might help us in getting a diagnosis in the first place instead of being dismissed with "it's your age", "depression" and all the other put-downs we meet.

I'd like to know more about the "window of opportunity" Sarah mentioned - is that a suggestion that those of us who spend years fighting for a diagnosis or, having got a diagnosis, then fighting to be allowed to manage the inflammation adequately instead of being told to "put up with some pain" and allowed to flare whether accidently or deliberately are going to have a harder road to follow? I certainly see that each big flare for me, for whatever reason, has been harder to put behind me - and I can only do so because I am lucky enough to have doctors who care more about my QOL than many seem to.

I wanted to invite them over here - the references to steroid toxicity and the side effects need to be looked at from our point of view too: I stand by my often-used comment that most steroid effects can be managed and even avoided when you know how. In the 5 years I had PMR no pred I had plenty of time to view it from the other side - PMR itself leads to so-called steroid adverse effects: weight gain due to inactivity combined with comfort-eating (all day at home in pain needs some joy!), mood swings and bad temper, mental health problems, relationship problems because if pred dampens libido so does pain, inactivity is a major risk factor for osteoporosis, my hair fell out and changed consistency, I bruised because of being so clumsy. If I thought more I could list more I'm sure.

There needs to be more thought and investigation into using pred better - I've been saying this to Sarah and others since the first OMERACT meeting I was involved with. They cannot look at pred and say it is bad for us without looking at the factors I have just mentioned - the baseline isn't at zero, the baseline isn't patient with pred versus patient with no pred, it is patient with PMR and pred versus patient with PMR and no pred. As long as the patient population was perceived to be over 70 and retirement for women was 60-65 then the ignoring of the idea of enabling those patients to do more than just sit at home and knit was maybe partly women being gaslighted because of a perceived lack of economic importance. But now we have increasing numbers of younger patients being diagnosed and retirement ages are shooting up, it is already 67, it involves workplace costs and economic damage. Maybe that will be heard? Our pain and disability isn't noticed - even by many doctors. There has been an assumption it is a short-lived illness. And many of us know it is not.

I think after 12 years of living with the forums and thousands of contributors, I, and a lot of others on the forums, have a great deal to offer to the research groups in terms of managing PMR and managing both pred dose and (possible) adverse effects. Diet is crucial - do our doctors EVER talk about that as they hand over that first prescription? Dexascans are essential - given no-one ever really tells anyone anything about preventing loss of bone density before they develop PMR. And having had the dexascan, only then can you look at the other pile of prescriptions which are not always required but which undoubtedly do not help with the adverse effects of PMR and pred, even if they think they do. More careful and selective use of the additional medication they are so keen on would also contribute to QOL in the long term for many patients.

I think I need to send an email ...

[nuigini in reply to PMRpro]

I just got back to this post and was so pleased to read your post. Well said!!

[nuigini in reply to nuigini]

I now just listened to the discussion and was honestly shocked to hear them still referring to prednisone as such a dangerous drug and referring to all the terrible side effects patients experience. Are we living in dreamland accepting the Mayo clinic study?

Like you, after 6 years on prednisone, the majority of time beyond 10 mg, I have very few side effects.

Edited....

I should clarify that I have not yet experienced and any of the "major" side effects of diabetes, osteoporosis, etc. I gained significant weight, experienced mood swings, had sleep issues on the higher dose as well as occasional dry eyes and blurry vision, and other side effects. However, I learned to control and reduce my weight and now weigh less than I have in 30 years (unfortunately I'm still overweight), and the moon face disappeared at some point.

What I do have is a quality of life that I'm not prepared to sacrifice and I'm sick and tired of every doctor I've seen telling me I need to get off this dangerous drug as soon as possible!

I should have just agreed with everything PMRpro wrote and left it at that, I was just very angry after listening to the podcast.

[Phoenix51 in reply to nuigini]

I would say that although new to prednisolone I do feel it is a potentially ‘dangerous’ drug and I have experienced many unpleasant side effects. I was completely unaware of the impact that the prednisolone would have, I am thankful that it reduced the GCA pain but am now left with a whole raft of other ‘ailments’ that affect my day to day life. I take onboard all of the excellent points put forward by @PMRpro on this but personally, my experience of Pred so far is not a positive one.

[nuigini in reply to Phoenix51]

I'm sorry to hear you are having such difficulty and apologize for the rather glib and insensitive post which I have now edited.

[Phoenix51 in reply to nuigini]

not at all nuigini no apology needed! We all have our own experiences that then inform our opinions. I dint find your post insensitive in the least . Take care

[PMRpro Ambassador in reply to Phoenix51]

You have GCA? You still have your sight? Is that not a positive aspect of pred?

[Phoenix51 in reply to PMRpro]

Yes, this is true and I think I have acknowledged previously that I was so grateful to be diagnosed and started on Pred early to protect my sight. However, it would seem that the glaucoma that I have developed together with the cataracts have been caused by the high dose Pred and that has resulted in some loss of vision (peripheral) and I am now on treatment for life. My mum has macular degeneration and has lost the sight in one eye and some in the other so I do very much understand the value of sight. I think my experience over the last 4/5 months has just given me a negative impression of the drug, it seems to have been one thing after another. I think one can understand and accept the necessity of something without being in favour of it.

[tangocharlie in reply to Phoenix51]

I do like that phrase 'understand and accept the necessity of something without being in favour of it'.

[DorsetLady PMRGCAuk volunteer in reply to nuigini]

I think quite a few of us were a little perturbed at the ‘damning of Pred” in the podcast.

We all know Pred is a powerful drug, and all powerful drugs have side effects, but with due respect to the leading protagonist - who has never been in the situation of losing the sight in one eyes, never mind both - I would say “Please try walking in our shoes before you vilify Pred”.

But if course that won’t happen until he is much older

...and maybe wiser!

[herdysheep in reply to PMRpro]

Wouldn't it be nice if they could be as thorough and thoughtful as your post?

[Phoenix51]

Thank you for this considered and heartfelt response. Your experience and knowledge along with others would indeed inform any research I’m sure. I take Pred for GCA and it’s certainly a double edged sword for me, when I started taking those 8 little white tablets ask in January I had no idea of the subsequent affect they would have, I was just so relieved that they stopped the pain and preserved my eyesight. However, after only 3 months down the line and lots of wonderful advice from those on this forum plus my own research and experience I have come to understand so much about a condition and it’s treatment, the effects of which are so wide reaching. Personally, I have had a negative view of Pred but reading your response above has encouraged me to see its value in a different way, there are ways to mitigate some of the effects.. we just need to be aware of them and be proactive in our own lifestyles rather than bemoaning the toxicity of the Pred, this is often easier says than done as I am finding. Thank you again.

[tangocharlie]

Wow, that is amazing. How did you manage to get TCZ for 'just' PMR? Because you are a long-termer?

[tangocharlie]

Ah, that explains it, hadn't realised you were in the US!

[PMRpro Ambassador]

Genentech has one of those programmes I think - you know, that provides affordable drugs for patients? If they can get rheumies to discover how well it works for PMR too it expands the market massively. There have been a few small-scale studies for tcz in PMR - seems to work well which isn't surprising

[123mossie]

Ah that’s interesting, we have lots of cost issues in the uk but it’s really encouraging that it helped so much. Re the interesting podcast, if you go on the EULAR website there are a few good papers re gca/pmr.

There is an opinion out there that most with pmr already have subclinical gca. Eek! Also I didn’t realise how much vasculitis is involved with pmr.

[PMRpro Ambassador]

Oh no, nothing sinister.