PMRGCAuk Annual Meeting....I wasn't alone today~!!

[Grammy80]

After my dress rehearsal last week, I got up at 4:30 AM, Central Time in the States, and was the only person at the Zoom link. I'm thrilled to report that I remembered today, and there were quite a few people. It was wonderful to put faces to the names of HU staff, Trustees, and some 'soul sisters' from the forum.

My compliments to Dr. Vanessa Quick, Rheumatologist Bedfordshire Hospital who conducted a seamless meeting. She introduced the two speakers and took questions in the chat that were discussed after each professional spoke...so much great information.

We heard from Dr. Christian Salinger, Gastroenterologist and IBD Lead regarding the PPIs...the case 'for and against.' Super informative and Dr. Quick relayed questions from the chat.

Professor Emma Clark, Professor of Clinica Musculoskeletal Epidemiology, Consultant Rheumatologist and Head of the Department, North Bristol NHS Trust, and Deputy Head of Bristol Medical School, spoke of the pros and cons of AA, calcium, vitamin D, and D3. The research into the health of our bones while on steroids and the findings were staggering and amazing. As usual for me....lots I never knew.

England is far ahead of the States in its research, knowledge, and awareness of PMR and GCA~! Your fast-track system is amazing. One could go completely blind in an ER here; I live in a rural area. I believe Dr. John Stone from Boston, Massachusetts, worked with Dr. Dasgupta and others on the clinical trials of Actemra and TCZ. It doesn't help to have faster scheduling here if you don't have a Doctor who knows what you are talking about.

I didn't mean to do a "minutes thing"...just sharing what information is out there for you. It was enlightening, and I got to 'meet' a few people from the forum~!! That alone was worth getting up before the sun.💞

[HeronNS]

Guess I should hve signed up after all as the bones info would have been useful to anybody . Great summary, thank you!

[Grammy80 in reply to HeronNS]

So worth it....though the hour was early for me, I'm so glad I went!!!💞

[PMRpro Ambassador in reply to HeronNS]

You can get the recordings

[NuttyR]

I heard your ‘name’ mentioned and I cheered (to myself) ! I thought both speakers were clear, concise and gave great information. I’m not taking PPI’s and now don’t feel bad about it. I do need to take the A Acid weekly now and not be so haphazard about it. PMR/GCA UK are such an impressive organisation, for a small charity, they do a lot.

[Grammy80 in reply to NuttyR]

Many moons before I ever took steroids, over 40 years, I had bleeding ulcers a few times and a real bleed from an overzealous orthopedic surgeon who kept hiking my Ibuprofen after a few ankle surgeries...bad doc; I needed transfusions for that in the 90s. So, I need a PPI, and I take a mix of sucralfate and pantoprazole, six pills a day....but I have had no gastric issues on steroids..amazing. I found it interesting when Dr. Salinger said sucralfate wasn't that available in the UK; it is now generic and used to be called Carafate. It has been the most effective med in my treatment ever. Professor Clark was really impressive, too!! PMRGCAuk is 'all that and then some.💞

[NuttyR in reply to Grammy80]

Awful to hear all you’ve been through. We are limited to approved drugs on the NHS by the MHRA and further limited by local area health management. All based on effectiveness and costs of course. Our pharmacist wanted to prescribe H2 inhibitors but it wasn’t approved so I don’t take anything. I think Carafate might be used by hospitals only here but not sure. Glad it worked so well for you.

We never stop learning when we are unlucky enough to get a medical condition or two. As my sister in law says to me ‘ you’ve got so many co morbidities! ‘. Not a compliment!

I fell over outside a couple of days ago. I was walking sideways and backwards making sure my new fence panels were being correctly delivered. Open wound on my knee which can’t be stitched so skin graft looks likely in a few more days. Now I’m learning about that. Something I would prefer not to know about!

Look after yourself!

[Grammy80 in reply to NuttyR]

Oh, bloody NO~! So sorry to hear about your fall....we just can't fall. I wish you well for sure!! Be careful, keep us posted and I hope all goes well for you.

We Americans are not immune to the same approval and limitations for meds and services~!! Ours comes under the guise of the insurance companies....they have formulary drugs, specialty drugs...and they can change their mind whenever they want. I actually called my insurance company yesterday...I'm in 'catastrophic coverage stage' and pay -0- for meds (because of the cost of Actemra) but keep getting these piddling bills for $3, $8 or $22. Bottom line, I pay it of course, plus $20 co-pay each time I see a doctor. Well, if it is my co-pay, let's call it even. Now they have decreed they are no longer paying for podiatrist trimming toenails. The sad part both doctors and hospitals are getting gouged. BlueCross/ BlueShield paid $320 to a hospital for a $9000 MRI??? Both systems have significant flaws.I have family in Canada, the same story.

I laughed at your sister-in-law...comorbidities ....one of my favorite 'group' words; a laundry list. Each day I'm breathing, I'm delighted and beating the odds. On 60mg now I'm shaking like a fall leaf on a tree....but I really don't mind, my eye is holding its own. Try to stay upright...💞

[NuttyR in reply to Grammy80]

I’m going to be extra careful from now on!

Back on 60mg! Poor you. I was same shaking on 60mg but also on 50mg. But as you say your eyesight is stable. Yay.

I definitely feel grateful for each day too.

Take care and I’m sure we will communicate again. X

[Grammy80 in reply to NuttyR]

👍🏻💞

[perceptual63 in reply to Grammy80]

❤️ This. 👇

"Each day I'm breathing, I'm delighted and beating the odds. "

[Grammy80 in reply to perceptual63]

Thinking like that puts a little 'grit' in my spine too~!💞🫂

[VeeWat in reply to Grammy80]

I wonder why they aren’t available in UK?

[Grammy80 in reply to VeeWat]

They are~~are you a 'member'? Do you get the Newswire....I believe the Membership fee is an annual 15pounds ...I didn't research; could be $15US.....plus you can make a small monthly too....but not necessary. Someone will come along with precise info or you could write Fran Benson. The Newswire, email newspaper filled with info, is terrific and I'd have paid twice the price just for today's speakers alone. I believe it was recorded and you could listen that way. Let me know if I can help.💞

[DorsetLady PMRGCAuk volunteer in reply to VeeWat]

Doesn’t look as if you have PMR or GCA - do you? You did post on here a few years ago, but nothing much since.

It was organised by the UK charity- your bio says you are in US - but you can still be a member as  Grammy80 has said - see this -

healthunlocked.com/pmrgcauk...

[Fatsiajaponica]

Yes lovely to see you!! I took some notes but now am not too sure about the calcium intake. It looks like I get enough in my diet and wondering whether taking more is harmful? Is the RDA sufficient for us steroid users? Also I will start taking the A Acid having heard from a real expert and seen the figures.

Wish I had recognised some more forum members but Grammy80 was fab ❤️

[Grammy80 in reply to Fatsiajaponica]

Oh...same here~!💞 I was on AA back in 2019 and don't recall now why or when I stopped it?? I'm going to review my med intake too. Professor Clark seemed pretty clear that we can't be reliant on our RDA....though I could eat a bag of spinach, no problem. My thinking now, is I should make sure I'm giving myself the best protection, even at almost 84. I have a rheumy appointment on the 14th....and we'll have a chat. So good to see you and yes, it was a lot of great info! The forum rules for sure💞

[Birder21]

I really enjoyed it this morning, it added to my very limited understanding and given me things to discuss at my next GP review!

[Heron82]

I missed the session as it is the annual art week and was helping out in the cafe. Your summary is excellent thank you. I look forward to watching the recording.

[windymiller in reply to Heron82]

Hi, how/when is the recording available please ?

[DorsetLady PMRGCAuk volunteer in reply to windymiller]

If you applied to attend initially it will be sent to you by email probably within the next week or so.

If not, you maybe have to contact charity -are you a member?

May also be put on the charity’s page -just keep on watch on that.

[windymiller in reply to DorsetLady]

Thankyou for your prompt reply. Yes, I am a member, and have been very grateful for the invaluable advice on this forum.

[DorsetLady PMRGCAuk volunteer in reply to windymiller]

Have you seen Fran’s reply to me below.

[Fran_Benson Partner in reply to DorsetLady]

The AGM and Members' Day is strictly members only so won't appear on the website. However any member who didn't register but would like to receive the recording can email us and we'll send a link to the recording.

[DorsetLady PMRGCAuk volunteer in reply to Fran_Benson]

Thanks Fran… thought that was case, but didn’t want to give duff info…

[Trek2]

It was the first AGM for me and I found it very interesting. A big thank you to the speakers.

[Mashed]

Hi thanks for sharing the info from the meeting. Can you remember what the overall research and subsequent advice was re AAcid when on steroids? Many thanks

[DorsetLady PMRGCAuk volunteer in reply to Mashed]

In a nutshell… take it!

[Mashed in reply to DorsetLady]

Thank you, I will start. I was under the impression that it was perhaps prescribed rather too freely and if you had good Dexa scan results it wasn’t actually necessary but this new research and advice seems to be saying we should be taking it. Thanks for the update.

[DorsetLady PMRGCAuk volunteer in reply to Mashed]

A lot of people on here think it’s too freely prescribed .. and you will see replies to that effect. But the experts do seem to be in favour -so I would say -read all the information out there -and have a good look at the ROS site -

theros.org.uk/information-a...

They have loads of videos and helpline is excellent.

It’s a very “marmite” topic… but based on your DEXA scan (although one lady oh here had good results and still ended up with severe difficulties) - and your family and personal history, at the end of the day it’s your decision,

Because of my history (hysterectomy aged 37), mother’s history and v. high doses for GCA, I took it for 4 years with no issues. Last DEXA - 3 years after finishing both AA and Pred was good -but suggestion was to continue VitD/calcium supplement -still am.

[Mashed in reply to DorsetLady]

Thank you for your reply. I do think I will give taking it a go.

[tangocharlie in reply to DorsetLady]

OR she said if you don't want to take AA discuss with your doctors and find something more appropriate for you, there are plenty of options

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

I know there are options - and I always refer people to ROS site as I did in reply to query

[tangocharlie in reply to DorsetLady]

I was just responding to 'In a nutshell… take it!' to add she said there are various options not just AA so if you don't fancy one look at another. I also endorse your ROS recommendation, they have been so helpful to me

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Good... maybe a bit perfunctory in previous reply.. 😼

[Estellemac]

I missed the AGM as I am away. Thanks for the summary. I look forward to seeing the recording.

[Pollyanna16]

I agree it was so well run & informative, I’ve got a pile of notes to go through as thought I’d try & transmit the main points to our support group tomorrow. Now wondering if I can face the kick back of stopping Lansaprazole as they said it’s not necessary on low dose steroids. One less pill! Was surprised though how Dr Salinger rather dismissed yoghurt as a protective layer.

[Grammy80 in reply to Pollyanna16]

I was too....it is mentioned so frequently and seems to work for so many! I say, if it is working for you...do it~! Docs are humans too.....💞

[tangocharlie in reply to Pollyanna16]

They (Christian and Vanessa) also ignored my idea of putting Pred in gastro-enteric gel capsules, probably because he'd never heard of them. He also said there was no advantage of taking gastro-enteric Pred if you're on a low dose

[Zebedee44]

I was also pleased to recognise a few names and feel part of a supportive community. It was a very well conducted presentation and I particularly liked Dr Christians constant smile, it was so very cheering.

Although I do take lansoprazole now , prescribed by ENT for acid reflux, the damage of not taking it for many years in the belief that kefir was protecting my stomach has caused atrophic gastritis. I think I have confused the benefit to the microbiome with stomach protection. Now I know better.

I’m also now feeling rather bad about not persevering with AA and the prescribed calcium/vit D supplément after negative experience in the early days of PMR. I was reassured that my weight bearing outdoor life caring for my pony was sufficient to maintain good bone health, and so was my doctor. Again, now I know better.

[Grammy80 in reply to Zebedee44]

Even though I garnered so much helpful information...Professor Clark's explanation of what steroids do to our bones, cell by cell, along with her recommendations, gave me a visual 'push.' Even though she talked about diet, etc., she was very clear about the need to take action and protect our bones. When you think of it...why not have that protection one way or another?....we do it for ourselves.

Yesterday I spoke with a friend, 84, who takes a monthly biphosphate, pops a tablet on the first of the month and has to sit for an hour after. She will text me a photo....but these were online: Risedronate (Actonel, Atelvia), a weekly or monthly pill. I know nothing about them except that she LOVES the idea of a monthly pill. There seems to be benefits to infusions as well???? I'll be talking to the rheumatologist next week. 💞

[Zebedee44 in reply to Grammy80]

I would also find a monthly pill more acceptable, but it was mouth ulcers that stopped me taking AA. The doctor said mouth ulcers might also indicate ulcers on the oesophagus. And calcium supplements appeared to be the cause of bladder irritation and repeat UTIs which did nit respond to antibiotics. I note neither of these side effects were mentioned during the talk.

[Grammy80 in reply to Zebedee44]

That is a point well taken....I've had stomach and duodenal ulcers way before steroids. They have been under control with meds for years now. Mouth ulcers must have been so uncomfortable...I'll raise these points with my rheumatologist next week plus tomorrow I will be seeing a new gastroenterologist...just for annual monitoring. I'll ask him also...thanks.💞

[tangocharlie in reply to Zebedee44]

I can't take calcium carbonate as it causes allergic-type reactions on stomach and bladder and guts etc. Dr Clark only mentioned the most common side-effect of constipation

[Meezamom]

Sorry, can I just ask what A Acid is? 😇

[DorsetLady PMRGCAuk volunteer in reply to Meezamom]

Alendronic Acid -a bisphosphonate to give bone protection. There are others available m, but AA is most common one prescribed.

Steroids can be leach the calcium from your bones -so it is recommended that you take bone protection. A vitamin D/calcium supplement may suffice.. but not for all

See FAQs -Bone Heath or look at ROS site

theros.org.uk/information-a...

[Meezamom in reply to DorsetLady]

Thank you, I'll have a look at that

[Fran_Benson Partner]

Grammy, so glad you made it at such an early hour for you. Was lovely to see you and I'm so glad you enjoyed the talks.

Fran

[Grammy80 in reply to Fran_Benson]

I received far more than I gave up in sleep, Fran. There was so much wonderful information and just lovely to see 'faces' .....both speakers were excellent~!!!💞

[AmberGamble]

Thank you for your ‘’report’ on the AGM yesterday. I had registered then got surprise visitors just before the start😬 One of them, my niece, had travelled quite some way so I felt I couldn’t be rude. I will hopefully get the chance to see the talks soon, and will enjoy watching them undisturbed!

The U.K. is a very mixed bag regarding health services, dependent on where you live. I was actually diagnosed whilst in the US at Christmas with sudden onset of both PMR & GCA. I was in the ER twice, then there for 6 weeks, until I was able to fly home.

Unfortunately, I’m in an area of U.K. with a high population and few Rheumatologists, so I waited for 8 months to see a specialist here and that was after paying privately. My referral was marked urgent as I had developed steroid induced hyperglycaemia and put on insulin whilst in California, but still I waited for months before I could get put onto a DMARD, Methotrexate, just 6 weeks ago.

We are, however, extremely fortunate with having the fabulous charity PMRGCAUK of which this forum is part😊 So we get the chance to ask questions and get reliable and knowledgeable help from several resident helpful members.

All the very best!

[Grammy80 in reply to AmberGamble]

Familly takes priority, for sure. The States can be a mixed bag too!! From all the wonderful contributors here, I've learned that knowledge gives us power as patients...no matter where you live. We also learn and share journeys with fellow travelers; this often takes the anxiety out of a situation as we watch progress and know....we are never alone! My best to you💞

[Nap1]

wow that’s impressive. Knew they were ahead of us by listening to people like the pro. Wish I was there

[tangocharlie]

I heard your name mentioned Grammy80! I thought both talks were very interesting, particularly Dr Selinger's about whether we need to take PPIs (spoiler alert - in summary probably yes at higher doses of Pred maybe not so crucial at lower doses). Although a gastroenterologist by trade he had done his research on PMR some of which I hadn't seen before about the percentages of people still on steroids after 4 years. It seems obvious to me that the charity PMRGCAuk should have this basic information about how many people are being treated for PMR and GCA which comes from anonimised GP data. I'm also buoyed and more hopeful for the future that Dr Quick is very involved in the charity as our future lies with the young 'uns like her and Dr Mackie and Dr Dejaco to move knowledge and treatment forward and help educate less-enlightened rheumatologists

If anyone missed it they said the recordings will be made available to members later

[SheffieldJane]

Very helpful and interesting feedback. I feel quite jealous now. Thanks Grammy! 💖

[Grammy80 in reply to SheffieldJane]

See you next time...😉💞