(Part 1) Living with axial spondyloarthritis (axSpA) - Dr Barry O'Shea 

My great great grandmother had this,skipped 3 generations and I was diagnosed after low Vir D levels and various bladder infections later. Been living with it for 20 years.

Dr O’Shea spot-on! Thank you for this fantastic interview!

Excellent dissertation, folks. Very thorough explanation of this brutal condition. I am a sufferer of Spondy. No AS diagnosis, neg for the HLA-b27 gene, but axSpA to the top of my head! In addition, pretty severe DDD throughout (not really mentioned here), very thin vertebrea discs, with multiple sites of stenosis in all parts of the spine. The re is no way of confirming this, but I fractured my right femur at age 15 in 1966. Asa result, the right leg is just over 1" short. It ws left unaddressed by the Ortho Dr at the time, and after about 15 years or so, the lower back stiffness commenced. I attributed the back stiffness to the leg length discrepancy - a trauma to the body and the Physiatry of the spine. It was not until 2011 after finally pursuing this with orthopedic dr , that a lift was prescribed for the right shoe. Too late, the damages were done. MRIs (a multitude of them have been done since) confirms the encroaching conditions mentioned above. One of the worst aspects of this is the Chronic STIFFNESS and Fatigue. yes, it does Flare up too. I do not take any meds other than the occassional Advil (2). A carpenter I met recently, siad to try this: take 2 Advil with 1 Extra Strength Tylenol. That combo works very well for the short term flare ups. Also mentioned here, is that I have OA in both Knees (right knee is bone on bone) and both Hips AND SI Inflammation. My Rheumatologist also said that Sacroilitis is Ground Zero for this condition, traveling up from the SI Joints up the spine. I can confirm that is Correct. These conditions (Cervical Instabilities) affect everything.... breathing (i have 25 degrees of Dextroscoliosis too), IBS, Bladder & Bowel incontinence, ear /eye pains Tinnitus, and chronic Sinusitis with TMJ issues to boot. Unfortunatly, I am a former 1 pack a day Smoker for over 45 years - 72 YO now. And Never drank enough Water !. 5

I've had AS 29 years this month and refuse to take medication. I tried a Coxib once and my heart went crazy. No thanks!!

Very helpful explanation of the disease and current treatments, clear and concise. This is a great interview, Very valuable! Many thanks

Very informative interview. I’ve never had a doctor explain about the inflammation in the tendons before but I’ve always noticed tendons throughout my body being sore and felt it was related to the AS. Now I know it is. I mentioned it to the pain specialist doctor and he said it wasn’t related . I wish this Doctor was my doctor. I finally got a scan/diagnosis at 52 after onset of symptoms at 31. I could barely walk for 4 years in my thirties from pain but no doctor picked up on AS . I don’t use medication other than otc ibuprofen but it’s so hard on my stomach I have to use it sparingly. I still can’t walk far , or sit in a car for long but I can swim and do short bicycle rides. It’s a fine line between keeping active and not provoking pain. I find this isn’t understood very well. I live in Canada and our health care system is not good. We can wait up to two years to see a rheumatologist. My last call ( yes call, they rarely actually see you in person)with the rheumatologist lasted two minutes. She said basically if I’m not interested in taking Biologics there’s nothing she can do. The injections cost $2500 per injection .I feel a person should be at least monitored yearly when they have a condition like this. Frustrating, But I feel here we’re on our own for the most part.

this is a great video - we all need a doctor like Dr. Barry - it took me 10.5yrs to get a diagnosis even though the symptoms were classic - and I had to do all the legwork myself - my NHS GPs were pretty much useless TBH. Diagnosis = why is a PET scan not more appropriate than MRI for highlighting inflammation? At the end of my tether, having been told by my GPs that there were no more tests or scans that could be done to diagnose my issues, I paid to get a PET scan privately & on seeing this, the rheumatologist v quickly said - within moments - that he suspected spondylitis - as all of the expected areas were showing up very clearly with inflammation ? now on amgevita these last 2yrs with moderate (but tangible) improvement.

I have been recently diagnosed with this condition. I had a very traumatic birth my pubic bone separated. I was 23 when this happened ever since I gave birth I have been in pain everyday there is not a day where I don’t feel pain. I’m 27 my life feels like a waste, my family helps me with both my children I can’t even remember my son much at all when he was born because I was just in so much pain. I have days where I feel like I’m going to die from the pain, I constantly wake up through the night and it’s just so hard to live with I have to try meet half way with moving and not moving. I’m currently on tremytha I haven’t noticed anything yet. I hope it works it is extremely hard to live with my whole life changed from this condition it’s change for my children as well just seeing their mum in pain all the time. I just hope one day there is a cure.

A list of helpful treatments and flare reducing actions you can take (have had AS for two years and largely back to a normal life) - reduce or remove for a week if possible: smoking, alchohol, added sugar - sauna - swim - hot water bottles - fast - stretch and move in water - massage - acupuncture - very light exercise (e.g. a walk) - a lot of water An inversion table is a total game changer for reducing tension in the back, as is a standing table. Both should be used if possible (inversion table max 2 sets of 5 mins a day at 60 degree angle)

If anyone suspects that he has axSpA, please read about Mold toxicity and Lyme disease; this might be the underlying cause of your condition. I have been suffering from it since I was 14, and now I am 37; it turns out that it was due to my mold toxicity, and withing a couple of weeks of addressing this problem, I feel 60% to 70% better.

HELLO DR O SHEA I was confirmed with this condition by you back in 2006 at Toronto Western and it is finally doing what you predicted. I had the MRI this year and its time to treat it as aggressively. I have taken a cortisone shot and i am not sure what to do.

Could a flare in the knee be misdiagnosed as a meniscus tear?

I have lost 89% of my lumbar lordosis with this. Middle spine isn't much better, however the cervical spine is still fairly unaffected though C4-C5, C5-C6 ligaments show early sclerosing.

Hello Thank you for the explanations. What about AIP ? The way Paleo food can help and ice bath? Anyone? Someone tried that? SN

Thankyou for this discussion. Very enlightening but not too frightening. I would be interested to know if there are other pre-existing conditions which might predispose a person to this condition or have a high incidence of comorbidity. Also, perhaps information about an individual which would encourage a Specialist to investigate a little further than they have other than just the paIn issues, like low grade temperature or other, ie other existing medically diagnosed auto immune disease (for me it's coeliac disease, diagnosed pre school age unusually, I'm now 57, or others like reactive arthritis, in my 20's and Fibromyalgia in my early 30's. Also, very interesting about the different MRI imaging request a doctor should make to elucidate an inflammatory condition to diagnose this condition earlier. Might have to get the doc to have another look! Thanks again, Cheers.

Very good interview- I have a question : why take so long to see a rheumatologist?

I have Psoriatic Arthritis but a recent MRI has shown acute sacroiliitis, bone oedema and osteitis pubis with ongoing axial spondyloarthritis, is the AxSpa the same as psoriatic arthritis or are they different conditions?

I have been for a few blood tests, i had test done for rhumatoid arthiritis it came back false negative, my test for imflammation came back positive, my vitamin D came back low. I had xrays in my back/hip and hand they came back as nothing showing, my neck and back came back saying i have arthitis. Its so confusing as my worst pain comes from my back and hip and right down my left leg, although my full body aches, i wake up 2-3 times a night with my forearms, elbow and shoulders aching, my hands ache, wrist, ankles, hip and lower back, And my groin. Also have plantar fascitits in both feet, if i have over done my upper body is tight and i have difficuilty breathing. After work i feel as though i have been hit by a bus, my heels are so so sore. I have been referred to a rhumatalogist but going to be a long wait. Dont know if i can wait months i have been trying to get this sorted for years this is them just doing these tests. I am so down about my day to day life, my pain on a good day is a 7 out of 10 on a bad day 10. So tired and fed up. Take meloxicam and dhyrcodiene, vitamin d, and onzeprole. Does anyone ever expierence pain i there achilles and calfs. Im am so depressed every night i say to myself maybe tomorrow i will feel better, i have been living like this for years now wondering if the next day will be better and it never is. I try to explain to people how sore and fatigued i am but its like they just dont believe me or understand how i am feeling. Often feel like giving up, if it wasnt for my family i would just give up.ARE ALL THESE SYMPTOMS SIMILAR TO HOW OTHER PEOPLE FEEL????

had it for fifty years pain free now don't know why

As a massage therapist, this sounds just like the hip jam that happens from excessive running. the only reasons it seems like "genes" is the reason is because body types are the same as your parents

I’m curious if there is any correlation with scoliosis. Do they go hand in hand or one causes the other?

its also hard to get a dx specially in America and if you are brown or a woman. it took me 9 years before a dr would listen.. take your biologics to prevent joint damage!!