This year's PMRGCAuk AGM

[tangocharlie]

I have just re-watched the recording of this Zoom AGM and it was time well spent both times round. It was chaired by Dr Vanessa Quick, whose work and ideas (Quick and Kirwen) have always fascinated me, indeed had me banging my fists on the table wondering why the ideas haven't caught on more in the rheumatology world. Doctors like her give me hope that better treatments will one day be availalbe for PMR and GCA sufferers.

First there was a talk by an NHS Dietitian giving tips for weight control on steroids. I'd have liked a bit more evidence-based detail on how steroids affect weight but as she pointed out, there hasn't been much research into long-term use of steroids and side-effects. The gist of the advice seemed sound. Then a bit by a rheumatologist including a brief history of steroids and their side effects, followed by a talk by a physiotherapist on how physiotherapy and exercise might help, the key being to find something you enjoy doing. But the last bit by a psychologist on how steroids and having a long-term illness both affect you mood and sleep really resonated with me, and I will use the practical tips she suggests.

It's available to members via a link and I'd say well worth sitting down with a cuppa and listening to, take notes as I did as it will stop your mind from wandering. It was worth the PMRGCAuk membership fee alone (which is my opinion is far too cheap, I'm sure people would be willling to pay £2 or £3 or even £5 a month). Not that you need to justify supporting a charity that supports you.

What did others think of it? Today is the last day to give feedback, again via an email link

[Bramble2000]

Exercise in any form would finish me off. I’m in so much pain I can’t even shower or get dressed by myself. I’m really put off NHS dieticians because they still advice diabetics to eat carbs. Bizarre. With regard to having a long term health issue and mental health, I’d like to know more about the effect of steroids on mental health. When I took them they had a major negative impact on my MH to the point that I had to stop taking them. 🙄😞

[tangocharlie in reply to Bramble2000]

That was my gripe, she didn't mention the latest research on how low-carb eating might help as it affects blood sugar levels and steroids cause BS to spike. She also advocated low fat, which has largely been de-bunked. She did encourage us to avoid starchy veg like potatoes and eat wholegrains, in moderation which I know are good for our guts but are still high-carb. Yes very like the old-fashioned diabetes nurse I saw about 5 years ago pedalling out of date advice. There was no mention of anti-inflammatory foods either. And too much about how a high BMI is unhealthy - we know that, we want to know what we can do about it!

If I remember right you're not on any steroids so you're bound to be in pain, they're the only thing that is proven to work to control PMR, and your PMR is probably getting worse due to uncontrolled iinflammation. Before I was diagnosed and put on steroids I could barely move. I kept being told I was just unfit and needed to do more exrrcise when it was PMR all along. That was the start of my cynicism towards medics

[Bramble2000 in reply to tangocharlie]

The NHS dietician thing is very frustrating. Fortunately, I seem to have plateaued regarding the PMR pain. My Ankylosing Spondylitis and Restless Legs Syndrome are a different matter! 🙄🤭

[tangocharlie in reply to Bramble2000]

I think the symptoms or manifestations of PMR and Ankylosing Spondylitis must be similar in some ways, as I was told what I had must be AS rather than PMR because I was too young to have PMR! I disputed that as I didn't have any of the symptoms of AS. One of many battles I've had to fight to get diagnosed and treated over the years, never give up

[Bramble2000 in reply to tangocharlie]

The two are very very different in every single way. It took me two years to get diagnosed with PMR because my symptoms started when I was about 48. Eventually it was diagnosed by PET/CT scan. It took nearly twenty years to get a definitive diagnosis of AS.

[tangocharlie in reply to Bramble2000]

That's what I said at the time when the rheumie tried to tell me I had AS or psoriatic arthritis, none of the list of symptoms matched yet PMR was spot on. It took another 3 years to get the PEt scan and they finally believed me

[Bennijax in reply to tangocharlie]

what does the PET scan reveal?

[tangocharlie in reply to Bennijax]

Areas of inflammation, including things like cancer. Mine showed classic inflammation in shoulders and hips indicative of PMR

[Bennijax in reply to tangocharlie]

Interesting. I'd be game to have this scan.

[Rugger in reply to Bennijax]

A PET-CT scan involves a hefty dose of ionising radiation, so not to be undertaken unless clinically indicated. It is also a costly procedure. Do discuss it with your doctor.

[Bennijax in reply to Rugger]

Thanks - correct. I have had two of these PET scans in the past - for separate and specific investigations - the radiation and there is also a blue dye that concerned me. Not to be taken lightly at all.

But if there was a safer kind of body scan that would show up where the inflammation is in the body, and I could afford it, I might be tempted.

[tangocharlie in reply to Bennijax]

For over a year I kept being told I had fibromyalgia not PMR and that I should quit seroids adn take painkillers instead, or just live with it, so I'm glad I had the scan and got the correct diagnosis. I had a second one a few years later when I had a GCA/LVV scare, luckily that proved to be negative but I think, I may be wrong, that only a PET-CT scan can see LVV (Large Vessel Vasculitis)?

[PMRpro Ambassador in reply to tangocharlie]

For the aorta probably - subclavian and brachial arteries can be seen with ultrasound.

[Sueloucam in reply to tangocharlie]

I was also told I was too young for PMR, and all my hospital letters have ‘suspected PMR’ on them. So having been on steroids nearly 5 years, I am finally on 1mg and hopefully be off them before Xmas! If the steroids worked, as they did for me, there is the proof.

[tangocharlie in reply to Sueloucam]

They say not entirely proof if PMR as steroids can work on other thngs, eg RA. Fantastic news that it has gone away, I'd be giddy, you'll be doing the okey cokey and hte locommotion at Christmas parties! Though some experts say keep on a low dose to stop it coming back.

[PMRpro Ambassador in reply to tangocharlie]

Though in many patients the initial response to pred can be characteristic - it is often slower and less in what turn out to be inflammatory arthritides. But doctors say what suits them - I had 70% resolution of symptoms in under 6 hours, probably 85%+ in a week, I could feel the difference each day. but he wasn't interested. It was PsA because my aunt had had psoriasis!

[tangocharlie in reply to PMRpro]

We both, and gawd knows how many others, suffered because of doctors pre-conceptions and missed diagnoses. It's only because I had the inner conviction and assertiveness skills to persist that I eventually got believed and taken seriously. I'm still angry though I know I should do an Elsa and 'let it go'. But then again, its' angry women that change the world

[PMRpro Ambassador in reply to tangocharlie]

When you let it go, things never improve and the ignorant continue to make people's lives rubbish.

[tangocharlie in reply to PMRpro]

Indeed, the charity was set up by strong women who said 'enough is enough' and wanted better

[Sueloucam in reply to Bramble2000]

I have restless leg syndrome and take a magnesium and zinc supplement which has more or less resolved it. Amazing after all these years. I do buy them myself, but when I was holiday I forgot to take them and the restless legs returned. It might be worth a try.

[tangocharlie in reply to Sueloucam]

I used magnesium tablets when I used to get cramp in my legs with the steroid injections, worked a treat

[Bennijax in reply to tangocharlie]

Ditto

[SheffieldJane in reply to Bramble2000]

Magnesium taken at night seems to stop that awful restless legs feeling for me, even during an attack of it.

[PMRpro Ambassador in reply to tangocharlie]

I think she just trotted out an off-the-shelf talk. I was seriously unimpressed.

[tangocharlie in reply to PMRpro]

She didn't tailor it to the audience sadly

[PMRpro Ambassador in reply to tangocharlie]

I don't think she knew enough to know she should ...

[tangocharlie in reply to PMRpro]

Edited. Accustomed as I am to public speaking (I used to teach people how to do presentations), I'd say a bit of planning and/or better briefing would have helped her put together a more relevant presentation and get the WIIFM? angle. If her objective had been clear, ie to advise people on long-term steroids on how to control their weight and avoid side-effects she could have included more relevant content. Like I said the slides on how having a BMI to high or too low is bad news was pointless, we already know that. She also vaguely said we put on weight 'probably due to receptors' - and then not expanding on that - I want to know why, what and how!

Just as the charity has funded research by Anne OBrien to look at exercise and PMR they should do the same and get someone to look properly at the side-effects of steroids and what can be done to mitigate them. As Dr Chinoy said, steroids were invented 80 years ago, are widely prescribed yet so misunderstood by the medical profession. Instead of helping us with the side-effects they are just hell bent with getting us off them asap, when at the moment there isn't an alternative to them.

[Thiago1396 in reply to tangocharlie]

Doctors certainly appear to have their focus centred on the general side effects of long term steroids. Mine do, it’s mentioned every time I discuss my PMR with them, in a general way. They stress tapering faster, if I can. Always careful when I mention keeping PMR inflammation under control, as no other known painkiller works. The urging to taper somewhat faster is always present. Over the 6 months I’ve had PMR I am still discovering physical issues which I suspect are steroid induced, never mind the mental issues, which thankfully are only mild and short lived each time.

I would certainly appreciate some in depth study on the side effects of long term use of steroids. And importantly how to counter them.

[PMRpro Ambassador in reply to Thiago1396]

So would we all but who will fund it? Instead of developing big gun drugs that cost so much that no healthcare system will realistically fund them, they need to learn to use what they have better. Just coming here and getting patient feedback would be a good start!

[tangocharlie in reply to PMRpro]

PMRGCAuk needs to fund it or find someone who will eg NICE. It could be done by say a pharmacist interested in the topic, and yeah, it needs not just desk research but listening to us patients. Dr Chinoy said at one point in his talk he was amazed that the things patients mentioned in Dr Quicks patient focus groups that they worried about like wieght gain, mood swings, insomnia were not the same things doctors worry about, like bones, we are just supposed to put up with things even though PMR and GCA and the treatments are life-changing

[PMRpro Ambassador in reply to tangocharlie]

PMRGCAuk doesn't have money of that sort, NICE doesn't care.

[tangocharlie in reply to PMRpro]

team up wth Versus Arthritis then, they are a bigger charity with more money and many people with arthritis are also on long term steroids. I'll leave some money in my will to PMRGCAuk, I doubt we'll have advanced our knowledge much in the 20 years or so I've got left on the planet.

[PMRpro Ambassador in reply to tangocharlie]

I assure you - it has been tried. Honestly, it isn't that simple!!!

[tangocharlie in reply to PMRpro]

It is a fundamental thing though, that and finding a definitive biomarker for PMR. There aren't really any alternatives to steroids atm so we need to know how to work better with them.

[Bennijax in reply to tangocharlie]

Completely agree - how can our voices come together and in what form to present this ASK for research into the uses of oral and muscular preds?

[tangocharlie in reply to Bennijax]

My hopes would be pinned on Drs Mackie, Quick, Yeates and other 'youngsters' who are on our side to take up the reins

[PMRpro Ambassador in reply to tangocharlie]

Prof Mackie is currently overwhelmed - I know that for a fact. Too many strings to her bow and her boss is demanding some prioritising.

[tangocharlie in reply to PMRpro]

Yes I know that, her sessions always over-run as she deals with complex cases and is a good listener who likes to get to the root of things. If only we could clone her

[Bennijax in reply to tangocharlie]

To be clearer from my previous post, when first diagbosed with PMR and not on steroids I had one psychotic blip on one day but that scared me. I had a depo medrone shot two months later, and felt great, that led to about a year on monthly injections and no depressive feelings. However when I stared on oral preds the experience changed gradually - 2.5 years on I suffer from depression, some days really severley, but there has been no weird or psychosis-type episode in any form on preds. Just common depression. I think Bramble2000 is asking if preds cause depression. I hope there are sufficient people who take the preds on this forum and who don't experience depression - to balance my post. The preds certainly make moving and doing possible, I couldn't bare constant pain from the PMR, and so I take the preds.

[tangocharlie in reply to Bennijax]

It does say on the Product Info Leaflet that comes with the Pred that a common side effect is depression, especially on reducing

[Bennijax in reply to Bramble2000]

DITTO, and I find it challenging to explain this to my family and friends. I get so down, so depressed I just want to gradually disappear into the earth, go to sleep and not wake up. Other days I'm hopeful again, but I can't figure out the correlation between this or that why.

[tangocharlie in reply to Bennijax]

Whenever you're feeling down come on here, we 'get it' and will get you through it

[Bramble2000 in reply to Bennijax]

I hear you.

[tangocharlie]

I do think the existence of people like Dr Mackie and Dr Quick and the people who run this forum like PMRPro and Dorsetlady and others is proof that angels exist and walk amongst us.

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Nice of you to include me, but my halo very often slips 😇…. And someone else I know occasionally . Otherwise we’d be tooooo boring 🤔…..

[PMRpro Ambassador in reply to tangocharlie]

Not a lot angelic about me!!!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

🤣😂

[PMRpro Ambassador in reply to DorsetLady]

Not that my halo has strangled me yet - that IS always a risk of course ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Sure you’d sort it out sharpish….

[Thiago1396 in reply to PMRpro]

😂

[tangocharlie in reply to PMRpro]

😆😆😆😂

[Thiago1396 in reply to PMRpro]

Some though! 😉

[Gossiplady in reply to tangocharlie]

Hi tangocharlie! I adore your remarks. So very true! Where would we be without our angels, Keep smiling.

[tangocharlie in reply to Gossiplady]

There are more name I should have mentioned, all the good people who volunteer on here and/or involved in the Charity but the list would be long and I'd be scared of missing anyone out so kept it brief

[Kendrew]

Where do I find the link please to listen to these talks?

[tangocharlie in reply to Kendrew]

If you're a member of PMRGCAuk and registered for the AGM you should have had an email with the link. If not you could contact Fran or Charon

[Kendrew in reply to tangocharlie]

I am a member and thought I'd registered but obviously something has gone wrong somewhere.Thankyou.

[tangocharlie in reply to Kendrew]

I thught I'd registered but when I hadn't heard anything a few days before I chased it so maybe yes, the admin went awry? It's recorded anyway so you can watch it. I found the psychologist's bit in the last half an hour the most useful talk

[EnyaBlue]

Definitely well worth a watch. Dr Quick was an excellent chair. The rheumy and physio excellent too. The dietitian was the weakest link and trotted out the usual NHS type advice. This view has been superseded in recent years by others in the food/diet/medical world and the science is evolving . UPF and grain based carbs has a different effect on each of us and are to be avoided if not eliminated if possible for most though not for all of us. Not easy in the modern food landscape. We all like a treat and have to live as best we can in whatever our circumstances and medical condition dictate. Which brings me to the psychologist. I thought her approach was good, not one I'd heard before and was interesting. Again a big topic and where to start given that some may have travelled on the road to PMR via stress and undiagnosed past trauma. Handling emotional issues is hard, no-one really understands others or themselves especially when life throws them a curved ball. We have to balance the emotional issues concerned with physical pain and drug induced chemical reactions. A learning curve for all and I think the word PMR journey sums it up. To keep moving is key, let's not say excercise as that conjures up images that don't appeal to some. Personally I swim to keep mind and body together and it helps me. I also take rest/meditation/mindfulness for 30 - 60 mins on the afternoon. Still I have difficultly coming to terms with it all on certain days, but try to be thankful for things I have.

[tangocharlie in reply to EnyaBlue]

Excellent summary, I concur with everything you say. I've had PMR for a long time and also other health things and poor and deteriorating eyesight, and I find mindfulness techniques like gratitude and stepping back from thoughts invaluable not just for surviving but thriving. I've written plenty of posts about my ideas over the years and they always resonate with people and get a good response. I got more out of this segment on the second watching as there are so many helpful tips in here some of whcih I missed the first time. I was surprised Dr Chinoy didn't mention swimming as it is apparently the best overall exercise. I think the key thing, as Will the physio said, is to find something you enjoy, it could be gardening or dancing round the room, as long as you're moving, little and often.

[Gimme in reply to tangocharlie]

Swimming keeps me moving and it keeps me sane. It works like a meditation on me. Living alone and not being able to go to the pool several times a week, as I had been doing, almost pushed me over the edge during the lockdowns.

[Gimme]

I find the misconceptions about diet and blood sugar very frustrating. I went on the diabetes prevention programme and they promote low GI eating. I lost 2 stone from eating this way and got out of the pre diabetes range for my Hba1c. I became more strict again when I went on pred and managed to not put any weight while I stuck to it, but I started to lapse a bit over the last couple of months and 2 or 3 pounds have crept on. It really does work. I don't think a few pounds over 8months on pred is too bad, but I recognise that I need to manage the creep.

I always laugh when people tell me to have more wholegrains and then I point out that I am probably an undiagnosed celiac and I can't and don't eat them, at all. No point trying to re-introduce them to be tested for celiac disease, as I already know that the grains make me very ill and I doubt that I would tolerate it for more than one day. I try to avoid white starchy foods as much as possible, although I do like potatoes and allow myself some now and again.

The focus on BMI is laughable. I don't need to get onto the scales at the surgery to know that I am fat. I get a reminder every time I look in the mirror or catch my reflection in a shop window. Do they seriously think that I want to be fat or that I wouldn't have lost weight already if I could have done? And do they really think that nagging me is helpful? Doing their part and helping me to manage this bloody disease, is the best way to help me to lose weight.

[tangocharlie]

Hear hear to all of that @Gimme. I can vary 2-3 pounds in a day so that wouldn't worry me. There are quite a number of us on here who try and follow low-carb regimes, it certainly works for me, I've got my blood sugars down (see my post on the ZOE project for full details). I had a few days away at the seaside staying in a hotel in summer, eating the breakfasts, toasted sandwiches for lunch, carbs with the main meal, result put on 9 lbs in a week! And it then took 3 weeks to lose it again. I eat the odd potato and brown rice as they ar emore'natural' than man-made pasta and bread but wearing the CGM told me I really need to avoid pasta and bread, even if it's wholemeal. I try to sneak some oats into dishes. The evidence is clear from all the research that cutting starchy carbs and sugars works. The dietitian in the AGM alluded to that but hould have been more direct, I don't think she actually knew anything about how steroids affect the body.

[Bennijax in reply to tangocharlie]

My own experiene with nutrition and diet experimentation has been such a boon. When I was first aware that my blood test inflammatory markers were way up, before being diagnosed with PMR, I immediately stopped eating all gluten in what ever form. I was still eating other grains however - substituting rice pasta for wheat versions. The substitutes didn't improve how I was feeling, so by the autumn of 2019 when diagnosed, I decided to go all out with gluten and wheat free, and carb and grain light. I lost several kilos, and my weight hardly varies since, unless I go off the diet I've worked out for myself.

Despite this, I now follow the Glucose Goddess recommedations best I can - not slavishly, but the concept of utilising vinegar and salads, and leafy green vegetables has been so helpful. YET DESPITE this I cannot get my glucose blood test results below 42. So I need to do more. I have come to love green vegetables, simple veg salads, soups and broths and always with a form of protein and good fat.

[tangocharlie in reply to Bennijax]

ou seem to be doing everything right. My bloods have gone from 53 to 47 and my GP is delighted. I learned from the Zoe study that combining foods and doing exercise after eating helps bring BS down. Also remember HbAi1c is an average, and averages don't exist, your actual BS control may be good, that's what I found

[Bennijax]

Oh dear I FORGOT ALL ABOUT THIS and I did want and intend to listen in. Tango charlie, would you psot the link for this? or how do I caccess the link now? thank you!

[tangocharlie in reply to Bennijax]

You need to get in touch with Fran to get the link, I can't post on here ecause it's for members only. You'll find the last 1/2 hour on the psychological effects of Pred and having a long term illness interesting. I don't think I've suffered from depression on Pred but I have done so from other meds. I was euphoric during my time on steroid injections by comparison though

[Bennijax in reply to tangocharlie]

yes, and the DM shots really sent me up high! but they became ineffective, the tapering from them was uncertain and it also meant relying on someone to give me the shots. Wasn't really working out.

[tangocharlie in reply to Bennijax]

Yes my rheumie at the time really messed up, tried to get me to have doses every few months when in fact they only lasted max 3 weeks, and then forced me to reduce the dose, which is when everything flared up and set me back nearly 2 years. Bloody idiot

[Bennijax in reply to tangocharlie]

I remember that - we were both on the D-M, we had that in common at the time. I also remember how enquiring and curious you were - glad to see you still are TC!

[tangocharlie in reply to Bennijax]

At the end of her talk, the las slide,the psychologist Leah Bousie mentions what looks like some very useful books on dealing with long-term illness. I'd buy them but have such a backlog of books to read atm, might put them on my santa list

[Pollyanna16]

email Charon or Fran at PMRGCA U.K. & they will send you the link

[Bennijax in reply to Pollyanna16]

I just did, thanks.