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National Axial Spondyloarthritis Society
United Kingdom
Registrace 7. 09. 2010
The National Axial Spondyloarthritis Society is a charity dedicated to providing information and support to people living with axial spondyloarthritis, an inflammatory arthritis of the spine. For more information visit www.nass.co.uk
Rheum for improvement one off special - The use of MRI in the diagnosis of axial SpA
The use of MRI in the diagnosis of axial SpA
Hosts Lucy Davies and Professor Hasan Tahir meet with Dr Timothy Bray, Consultant Radiologist at University College London Hospitals NHS Foundation Trust and Professor Alex Bennett, Consultant Rheumatologist at the Defence Medical Rehabilitation Centre, Stanford Hall. Alex and Tim discuss the role of MRI including when it should be used, who should request it, the correct approach (sequences / protocols) and diagnostic criteria and how closer working between radiology and rheumatology can help reduce the delay to diagnosis in axial SpA.
#MRI #axSpA #axialSpA #imaging #radiology #MSKRadiology #msk #ankylosingspondylitis #axialspondyloarthritis #ActOnAxialSpA
Hosts Lucy Davies and Professor Hasan Tahir meet with Dr Timothy Bray, Consultant Radiologist at University College London Hospitals NHS Foundation Trust and Professor Alex Bennett, Consultant Rheumatologist at the Defence Medical Rehabilitation Centre, Stanford Hall. Alex and Tim discuss the role of MRI including when it should be used, who should request it, the correct approach (sequences / protocols) and diagnostic criteria and how closer working between radiology and rheumatology can help reduce the delay to diagnosis in axial SpA.
#MRI #axSpA #axialSpA #imaging #radiology #MSKRadiology #msk #ankylosingspondylitis #axialspondyloarthritis #ActOnAxialSpA
zhlédnutí: 69
Video
Marcus’ 200 Mile Cycling Challenge for NASS
zhlédnutí 177Před měsícem
Marcus Weedon, who has axial SpA, will be cycling 200 miles across Norfolk in September to raise vital funds for NASS. NASS caught up with Marcus to find out more about his journey with axial SpA from pub owner to running club organiser, and why he’s decided to take on this extraordinary challenge. #AS #axialspa #axialspondyloarthritis #ankylosingspondylitis #NASS
Physical activity and axial SpA - update on the latest research with Dr Matt Roberts
zhlédnutí 869Před měsícem
Dr Matthew Roberts, Research Scientist, delves into the research around physical activity and axial SpA. Watch to understand why it helps axial SpA symptoms, to know how much activity is right, and how to find the movements that work for you. Enjoying this video? Subscribe! → czcams.com/users/NASSCentral We are the National Axial Spondyloarthritis Society (NASS) and we are here to transform the...
Creating a Gold Standard in axial SpA treatment and care
zhlédnutí 167Před měsícem
Learn more about our exciting project to develop a Gold Standard in treatment and care of axial SpA. Amy and Mel, two of our steering group members with lived experience, share what we mean by a Gold Standard, why they decided to get involved, and why your views are vital. Learn more here: nass.co.uk/news/goldstandard/ Enjoying this video? Subscribe! → czcams.com/users/NASSCentral We are the Na...
Getting the most out of medical appointments for your axial SpA
zhlédnutí 129Před 2 měsíci
With limited time in medical appointments, it's important to get the most out of them. Zoë shares advice on preparing, making use of the time in appointments, and ways to reflect afterwards. How do you get the most out of your medical appointments? Let us know in the comments 👇 Enjoying this video? Subscribe! → czcams.com/users/NASSCentral We are the National Axial Spondyloarthritis Society (NA...
Understanding Patient Initiated Follow-Up appointments (PIFU)
zhlédnutí 178Před 2 měsíci
Patient Initiated Follow-Up appointments (PIFU) are being used more and more by rheumatology departments. It means that, rather than having a routine appointment every year, you decide when you'd like an appointment. Find out more in this video. Enjoying this video? Subscribe! → czcams.com/users/NASSCentral We are the National Axial Spondyloarthritis Society (NASS) and we are here to transform ...
Rheum for improvement one off special - axial SpA and IBD
zhlédnutí 202Před 3 měsíci
'Earlier recognition of axial SpA in patients with IBD - how can we achieve this' Hosts Lucy Davies and Professor Hasan Tahir meet with Dr Christian Selinger, Consultant Gastroenterologist at Leeds Teaching Hospitals NHS Trust and Professor Raj Sengupta, Consultant Rheumatologist at Royal National Hospital for Rheumatic Diseases, Royal United Hospitals Bath. Christian and Raj discuss the links ...
Rheum for improvement one off special - axial SpA and uveitis
zhlédnutí 272Před 3 měsíci
'Unravelling the hidden complexities of Acute Anterior Uveitis, what the eye is trying to tell you' Host Lucy Davies meets with Dr Nima Ghadiri, Consultant Ophthalmologist at Royal Liverpool University Hospitals NHS Foundation Trust and Professor Karl Gaffney, Consultant Rheumatologist at Norfolk & Norwich University Hospitals NHS Foundation Trust who is Chair of the British Society for Spondyl...
Advice from healthcare professionals to get the most out of axial SpA appointments: Your SpAce
zhlédnutí 376Před 4 měsíci
Rheumatology healthcare professionals share their top tips to help you get the most out of your medical appointments for your axial SpA. What advice would you give someone else with axial SpA? Let us know in the comments 👇 Enjoying this video? Subscribe! → czcams.com/users/NASSCentral This is Your SpAce. Here we build skills together to live life with axial SpA. These videos have been made in c...
What to do after and between medical appointments for your axial SpA: Your SpAce
zhlédnutí 195Před 4 měsíci
What can you do after and between medical appointments for your axial SpA? How to manage your axial SpA between appointments. What was your favourite tip shared? Let us know in the comments 👇 Enjoying this video? Subscribe! → czcams.com/users/NASSCentral This is Your SpAce. Here we build skills together to live life with axial SpA. 00:23 What should you do after a medical appointment? 00:34 How...
Navigating medical appointments for your axial SpA - how to get the most out of them: Your SpAce
zhlédnutí 372Před 4 měsíci
Navigating medical appointments for your axial SpA - how to get the most out of them: Your SpAce
Preparing for medical appointments for your axial SpA: Your SpAce
zhlédnutí 286Před 4 měsíci
Preparing for medical appointments for your axial SpA: Your SpAce
Why Danny has pledged to leave a gift in his will to NASS to help people with axial SpA
zhlédnutí 162Před 4 měsíci
Why Danny has pledged to leave a gift in his will to NASS to help people with axial SpA
How to make travelling with axial SpA (AS) easier
zhlédnutí 519Před 5 měsíci
How to make travelling with axial SpA (AS) easier
University life with axial SpA - Emma and Max's experiences and advice
zhlédnutí 182Před 5 měsíci
University life with axial SpA - Emma and Max's experiences and advice
Jamie reflects on his 3,000 mile row across the Atlantic 3 weeks with axial SpA.
zhlédnutí 89Před 5 měsíci
Jamie reflects on his 3,000 mile row across the Atlantic 3 weeks with axial SpA.
How do you make decisions about medication for axial SpA? Your SpAce
zhlédnutí 467Před 5 měsíci
How do you make decisions about medication for axial SpA? Your SpAce
Getting started with biologic therapy for axial SpA: Your SpAce
zhlédnutí 421Před 5 měsíci
Getting started with biologic therapy for axial SpA: Your SpAce
Making decisions about axial SpA medication: Your SpAce
zhlédnutí 366Před 5 měsíci
Making decisions about axial SpA medication: Your SpAce
Understanding your medication options for axial SpA: Your SpAce
zhlédnutí 462Před 5 měsíci
Understanding your medication options for axial SpA: Your SpAce
Keeping comfortable while working at a desk with axial SpA
zhlédnutí 192Před 6 měsíci
Keeping comfortable while working at a desk with axial SpA
Pregnancy and axial SpA, including axial SpA medications during pregnancy
zhlédnutí 150Před 7 měsíci
Pregnancy and axial SpA, including axial SpA medications during pregnancy
Hypermobility and axial SpA - how do you manage both conditions at the same time?
zhlédnutí 389Před 9 měsíci
Hypermobility and axial SpA - how do you manage both conditions at the same time?
The benefits of walking for axial SpA and how to get started
zhlédnutí 394Před 9 měsíci
The benefits of walking for axial SpA and how to get started
Pain management for axial SpA (AS) with Dr Arul James
zhlédnutí 370Před 10 měsíci
Pain management for axial SpA (AS) with Dr Arul James
Cost of living tips for people with axial SpA - what financial support is available?
zhlédnutí 352Před 11 měsíci
Cost of living tips for people with axial SpA - what financial support is available?
Stretch and strengthen exercise class for people with axial SpA - with NASS Online Branch
zhlédnutí 514Před 11 měsíci
Stretch and strengthen exercise class for people with axial SpA - with NASS Online Branch
Pilates for people with axial SpA - full body workout with InReach Pilates and NASS Online Branch
zhlédnutí 524Před 11 měsíci
Pilates for people with axial SpA - full body workout with InReach Pilates and NASS Online Branch
I have finally got round to watching this, and I am so glad I have! Exceptional work Dr. Roberts and the team. Not only for the level of research you're doing and contribution to the overall support for our patients/members, but also how brilliant you have presented this information for all to understand. Thank you
So glad it was helpful! I'll pass this onto Matt and the team, thanks Josh! ~Zoë
Dear Zoë, thanks for this. Really helpfull. I still have a question: can overdoing sports trigger a flare as well? I'm building up my sports at the moment and have the feeling that I have more flareups due to the increased activity. If that is the case, pacing myself is probably the best solution?
Hi, do you have access to a physiotherapist through your rheumatologist? I recommend speaking to them for personalised advice, as it will depend on the type of sport, as well as the intensity and frequency that you're doing it. In the meantime, this talk with a researcher has some good advice about finding that right amount of activity: czcams.com/video/BZMyZUXiWE4/video.htmlsi=sHxQkAyq4BDgIJtW I hope that's helpful ~Zoë
@NASSCentral thanks alot!! Just seen it and it is very interesting indeed. Gives good insights
Definitely inspiring
The 'show transcript' doesn't work for me. can you fix?
Hi, I'm afraid we don't have a transcript available for this at the moment. In the meantime, are you able to use the closed captions on the video? ~Zoë
Very interesting session. I have shared to my NASS branch members and to a couple of fb groups.
That's wonderful, thanks so much for sharing! ~Zoë
A very interesting and informative session. Thank you very much indeed.
I totally agree with Dr Roberts. I got AS at 17, by 24 my spine had fused. I spent years on NSAIDS and opioids so I could work, it was hard work and I knew doing more than 4 hours a day would damage me, I was a very sick person and my hips were really bad. At 30 I got a dog for companionship and to get me walking. I gradually increased how far I walked every day and in 4 years I was able to jog and walk long distances. Also I was not taking drugs to get through the day. I felt like Forest Gump it was amazing. Now my dog is older and he can`t walk very far so I don`t walk as much, I am back to having bad hips and taking opioids to get by.
Thanks so much for sharing, I'm so glad your dog helped you get more active and animals are so important for companionship, aren't they? <3 I always think bending down to feed my cat helps me keep track of my spine stiffness! ~Zoë
Completely agree - if people listened earlier - it would save money for the nhs 👍👍👍
Great video guys! I've been diagnosed about a month now and they have given me some stronger anti-inflammatory tablets morning and night, definitely has helped but my pain in my Achilles is so tender so hard to jog had it for the last 3-4 years no rest or strengthen has helped it go.
Hi, sorry to hear that. We have a video about foot and ankle pain that may be helpful: czcams.com/video/PGnjzLPlwj0/video.htmlsi=X0kFJ6oqgaDDkpXF If you haven't already, do mention this pain to your rheumatologist as they may be able to offer advice or change medication if it doesn't settle with the new anti-inflammatories. They may also be able to refer you to a rheumatology physiotherapist for personalised advice ~Zoë
Gary is a star
I'm 37 male with low score testosterone 8.1 low to high range is 8.8-30, I'm interested to see if I get my score up on trt then see if this helps my AS, I'll will let the comment know in the future if any benefits comes with it 👍
Great video, just been told I've got this last month, do you think low testosterone would make this worse?
Hi, we're not aware of any research on this, but we'd recommend speaking to your GP or rheumatologist for personalised advice ~Zoë
@@NASSCentral I'll let you know when I start and if any changes 👍
A really big Thank you to Dr. Roberts, his team, the participants and NASS for this study. Very grateful for these studies.
Really interesting and well presented 👍 I knew from NASS that exercise is very important but it was fascinating to learn the science behind it. I find that I feel better if I walk regularly but worse if I walk too much and now I know why ! Thank you to Matt and all the team for their research.
Thank you Matt and all your team at Loughborough. So much to take in here. 🙏
This is so good. Thank you Matt and the rest of the team at Loughborough for all you are doing for us with AS. 🙏
This is EXACTLY the kind of information I was looking for! Thank you so much.
I really admire and respect your efforts. I suffer from the same condition in addition to three other chronic conditions. In addution to constant fatique, i find it challenging to sit down for any length of time due to the excruciating pain. Consiquently, i tend to lie down most of the time as a means of managing the pain. Is there any suggestions?
Hi, if you haven't already, I'd recommend speaking to your rheumatologist or physiotherapist for personalised advice. It may be that they can recommend something to control the inflammation that's causing your pain, to allow you to be more active. In the meantime, we have some great info on managing pain here: nass.co.uk/about-as/your-space/pain/ I hope that's helpful ~Zoë
Thank you so much for your tireless work, and for bringing it directly to us! Question: My job requires a lot of walking (approximately 12K steps in a 5-hour shift). I stretch my back a lot when required to bend over (as I cannot squat due to advanced knee arthritis). I rely on a heating pad on my back when I am not in motion at home. It is soothing, but is it actually doing anything helpful? Just wondering if I am doing further harm to my spine (many bone spurs throughout-“facet syndrome” and diagnosis axial spondyloarthritis) since I am doing more than the amount of walking your research shows is helpful.
Hi, so sorry if I've misunderstood your question. Were you asking whether the heating pad is helpful? They can be really helpful for pain relief and relaxing muscles. As long as your skin is protected, they shouldn't do any harm. Also, doing more than the amount of walking the research showed was helpful shouldn't do any harm. But as Matt shared, it may be helpful to add in other activities outside of work, like gentle stretches, to help balance things out. I hope that's helpful ~Zoë
My blood sugers are all over the place, lowest 4.7-highest 11.2... It's very frustrating. Is this normal for someone with ankylosing spondylitis?
Walking is a problem for me as I fractured my T11 and it's a wedge fracture, pushing everything forward in my stomach, it's so bad it's affecting my stomach, bowels ect. I'm waiting to have an operation now as it's causing so many issues on top of everything else. What's your thoughts on this please?
Hi, I recommend speaking to your healthcare professional about this. We're not aware of a link, but it's best to get personalised advice ~Zoë
Hi, I'm afraid as a Research Scientist Matt wouldn't be able to advise on this. I recommend asking for a referral to physiotherapy, as they should be able to advise what activities are going to be helpful for you to do and safe while waiting for surgery ~Zoë
@@NASSCentral Thank you x
@@NASSCentral Thank you again for getting back to me x
Thank you guys for this interesting and informative live session. It was much appreciated. 👍
So glad it was helpful! ~Zoë
Very helpful! Will buy a TENS machine to try this, my spondyloarthritis has plagued my life for almost 4 years now, and has severely affected my quality of life, physically and psychologically. I hope it will help, fingers crossed!
Really glad the video was helpful and I hope the TENS machine helps. Sometimes a few small things like that can make a big difference. We also have these videos on managing pain and flares, which may be useful if you've not seen them before: nass.co.uk/about-as/your-space/ ~Zoë
Great video from Zoe as always. Sadly I’ve found that some rheumatologist are better than others. If you have one that understands and cares they will champion you. If you don’t, use PALS.
I’ve never heard of this, or been offered it
Hi. Yes, it's quite new but hopefully now if it comes up in an appointment you'll know more about it
I'm 41 had it for years but only recently diagnosed. Exercise makes it hurt more walking puts me in agony. Good add tho very funny
Just got diagnosed last week (FINALLY!) after years of pain and more. THANK YOU FOR POSTING THIS!
I have axial and pheriphral ax spa. The pain is horrendous. Also gives me stomach issues and pelvic pain. I get it in the ribcage too. My legs also go numb, but up to now numbness lasts a few minutes at a time.
I would really like to see exercises and stretches that are tailored to people who have sustained a lot of damage over the years from AS. All the videos I find are for young people who have little damage.
Hi, thanks so much for your feedback, we'll definitely include more of these. The Somatic Movement and Tai Chi taster classes in our exercise playlist may be suitable: czcams.com/play/PLnKgSfibFP6LCVpzAIFTW4ygQsr-3dr6R.html&si=uPmGOfxSc9LEGFqf For any exercises lying down, you can lie on a bed rather than a mat on the floor. If there are any particular types of classes you'd like us to run taster sessions on, please feel free to email me at zoe@nass.co.uk Thanks! ~Zoë
@@NASSCentral I took a quick peek at both videos. As I suspected, Tai Chi requires twisting and some rotation that involves the L-spine and pelvis. I'm sure I could modify the movement but I will have to play with the movements to find what works. As for the somatic movement video, lying on the stomach is a huge problem and quite painful in the lumbar spine. Lifting up the upper body puts tremendous strain and causes compression in the L-spine. With someone who has had multiple surgeries in the lumbar and sacral spine as well as decades of misdiagnosis, we tend to have osteoarthritis from repeated flare activity: bone spurs, scar tissue adhesion, ligament thickening, etc. Add active disease which includes bone marrow edema, nerve root compression and ankylosing, I'm sure you can imagine how difficult it is to find a whole routine of movements that don't aggravate my low back. (I have active pathology from T-12 to my hips) I will try altering the Tai Chi movements. Even if I can only add a few minutes of Tai Chi motion it's something new. I wish I had something to recommend for you to run a taster session with. I'm still trying to hobble together for myself by combining physical therapy and strength training exercises. Thank you, for responding to my comment.
Hi. I've got my first rheumatology referral coming up in 2 weeks for axial spondyloarthritis. I'm very early on in understanding this condition (in fact I haven't even been formally diagnosed yet!). My GP seems confident that it is AxSpa. I've had the lower back pain around the sacroiliac joints for over a year now, but in recent months I've been having what I'm assuming are flare ups? Insane fatigue, feeling like I'm getting a bad cold, back feels worse than usual, itchy eyes....weird other aches in my knees and feet. Does that sound familiar to anyone?
Hi, this does sound similar to axial SpA, so it's good you have a rheumatology appointment to get things assessed. We have some information about what happens at a rheumatology appointment and how to prepare here: www.actonaxialspa.com/category/rheumatology-and-diagnosis/ I hope it's helpful and please do get in touch with our Helpline if you'd like to chat through with anyone: nass.co.uk/contact-us/ ~Zoë
It would help to know the name of her medication please
Hi, while I cannot give the details of Mel's medication given the personal details of that. The group of medicines referred to are Anti-TNF biologic medication. You can read more about these here: nass.co.uk/managing-my-as/medication/biologic-therapy/ We also have help for making medication decisions here: nass.co.uk/about-as/your-space/medication/
I found teh box breathing almost impossible for more than 2 seconds as it hurts so much
Hi Sarah, that can be quite a strong one, so please avoid if it's aggravating the pain. You can always just pick one exercise that feels best and stick with that for a while, so it's not too much. I hope that's helpful ~Zoë
My ribs are the worst for me chest sternum and middle spine. They are so swollen it hurts to breathe most days. This has really helped me whilst lying down thank you zoe and for your support previously. Sarah M.
Hi Sarah, I'm so glad it's helpful, as this is such a tricky area of pain to manage. Please do get in touch if you'd like any other advice ~Zoë
It took me over 20 years to get a diagnosis and I worked in the medical field....
Thank you for bringing awareness to Parliament 🙏
You dont say what medicației helped......
I've been in horrendous pain since 2012 ...2016 I found out hla b27 but sacrum had no inflammation...finally saw the rhumatologist last week mri again Thursday but don't see her for 3 months fo an answer. I cannot describe the hell as this guy is mentioning 😢...the pain like your dying and mental aspect coming from a very sporty life is terrible.
So would have been waiting for a diagnosis is almost 13 years
Jeez ive been suffering with horrendous pains in hips back (do have a few herniations and a couole tarlov cysts) hla b27 posative. Have had sooo many a and e visits and hospital stays in orthopaedics , nobody understands the pain 😢 and quality of life especially after years of being sporty , swimming , running , horse riding. Mri 7 years ago showed no inflammation and due for another mri on Thursday. If i could atleast put a name to whats wrong with me and start treatment as this has been going on since i was 30 and 44 in june. Periods are just horrendous now as it adds to the pain. Also need a colonoscopy done again soon and cant bear the thought of sitting in the chair with sturrups , due to the sheer pain. How do you explain to a dr or person who doesnt have to live with that pain. X
Sorry to hear that you've been going through all of that. Good luck for your rheumatology appointment. Please do contact our Helpline if there's anything we can help with: nass.co.uk/contact-us/ We also have a section of our website that shares lots of practical tips on managing your symptoms: nass.co.uk/about-as/your-space/ ~Zoë
AS is a terrible disease and can take many years to diagnose, for me it took over 20 years. I was taking Simponi and arcoxia to control my inflammation which worked well. Unfortunately I was diagnosed with cancer in 2021 and all my AS medication was stopped.
Really appreciate this.
Maybe the biggest sign I have this is that I find this ad hilarious lol. But even with a strong family history and decades of back pain, it's so hard to get even rheums to pay attention to it unless you're practically crippled. They don't seem to respond to the niggling, day to day pain, fatigue, and lost sleep, even when it leads to you compromising and compromising and compromising with how you lead your life. I hope there's a similar campaign to raise awareness with medical professionals!
Thanks for this Zoe, helps me gain some confidence to travel and go on holiday. Now to find some cool bags that fit my meds in.
I'm so glad! I hope you have some great adventures :D ~Zoë
Newly diagnosed AS, over a decade suspected… gone from feeling alone and hopeless to being able to achieve your regime. Albeit in 3 stages today but will try and do this every day. Thank you. Sammy, Shropshire.
I'm so glad you've found the exercises helpful, Sammy. We've put all our exercise sessions in one playlist here: czcams.com/play/PLnKgSfibFP6LCVpzAIFTW4ygQsr-3dr6R.html&si=t2Sn-ZuSBVK-uM-c ~Zoë
Well done Danny. Thank you. 👍
Thank you so much for the helpful advice...Traveling many hours on a plane can be a real long painful ride... Cheers from the U.S.
You're welcome, I'm glad it was helpful! ~Zoë
This was really useful, thank you so much. You mentioned about providing some recommended cool bags for travel. Where can I find these please?
So glad it was helpful! Here's our info on cool bags: nass.co.uk/managing-my-as/living-with-as/travelling/ And you can download the slides with the extra links here: nass.co.uk/travelling-with-axial-SpA ~Zoë
Perfect thank you!
I really enjoyed this discussion. Thank you!
So glad you liked it!
What about india?
Hi, I'd recommend getting in contact with ASWS: asif.info/country/india-asws/ As we're a UK-based organisation we're not familiar with what support is available. I hope they're able to help ~Zoë
Is there any guide or book you can refer for these yoga poses?
Hi, Jamie or Geoff from Yoga for AS may be able to recommend something. You can contact them here: yogaforas.com/ ~Zoë
Thanks for the video. I have an important question. I have never had chicken pox , measles or mumps. I am due to start a biologic adalimumab for my AS in the following weeks. Do you think I should have a vaccine for chicken pox before I start the biologic? My partner is on immunosupressants. I'm worried of what could happen to myself and my partner if I caught chicken pox. My partner did have chicken pox as a child but I never did as previously mentioned. I am having blood tests in a few days but don't know what they are testing for. Thank you. Regards.
Hi, we recommend discussing this with your GP, as they'd be the ones to give the vaccine if you need it. From the information here, it appears you'd be eligible for it: www.nhs.uk/vaccinations/chickenpox-vaccine/ Definitely check with your rheumatology team to see if you need to leave a period of time between receiving the vaccine and starting biologics, as some vaccines need that. I hope that's helpful and you get a big improvement with the biologics ~Zoë
@@NASSCentralThanks for your reply and information. I will speak to my rheumatologist and ask before I start. Thanks also for the link. Kind regards.
Neck ones gd.