Ankylosing spondylitis - anyone?

[PIPERHELLO]

I am pretty sure I have Ankylosing spondylitis, despite a rheumatologist dismissing this as a possible cause of my on/off severe lower back pain.

I think I am an absolute text book case apart from not having the gene that some SA sufferers (not all) have.

i have two questions;

• are there any non medical (ie supplements, physio etc) things that you may be able to recommend.
• how did you get diagnosed & should I ask for a second opinion?

thank you

My mum has cervical spondylitis. She used to put cabbage leaves on her neck and now that I have weather dependent rheumatism, I swear by it. Wash a few leaves dry them up, Bach them with a rolling pin and place them on the pain affected area. I them wrap them with cling film and keep them for a few hours. 4 maximum. I repeat as necessary but after a couple of times o don’t have issues for the next few months. Imagine I ache when’s the weather changes. Cabbage contains a substance with anti inflammatory properties.

Hi

This may be of no use to you at all but about five years ago I went to a chiropractor for back pain but because of SI joint pain he referred me to my GP for investigation for suspected AS. GP tested me for the gene which I didn’t have, but I had other symptoms. X-ray showed some sclerosis of the spine but there was nothing to compare it to. GP suggested that I throw money at the problem and go to a physio and PT which I did. Since then the back pain has lifted a lot, I haven’t been for another X-ray and I just keep moving. It’s not ideal and sometimes I just feel too tired and can’t be bothered but I try to keep going.

I’m not sure what the pathway for diagnosis is if you don’t have the gene or what the treatment is but I hope you find a way forward.

I have it, diagnosed via MRI, which is the gold standard. I don’t have the common gene for it, but I do have a different gene which gives me a 5x greater risk of having AS. The nhs only test the most common one but I’d had my genome mapped for other reasons so knew I had this less common gene.

And movement is definitely key. I do a lot of weight lifting, Pilates, YouTube mobility videos. Like 5 days a week.

And about 15% of people will have it without having the gene so if you have textbook symptoms they really should do an mri.

Hi,

I have it and I’m also HLA B27 positive.

What symptoms do you have, OP? And did the rheumatologist say why it wasn’t AS, in their opinion? Did they do any imaging?

Thanks so much everyone.

The first rheumatologist I saw was great - the GP sent me after blood tests showed raised inflammatory markers. The rheumatologist suspected AS & requested the gene test and a full length spine MRI.

The follow up appointment was with an awful rheumatologist who was so incredibly dismissive, said the radiologist had spotted an old pars fracture & it was probably just weakening the support of my spine, causing the pain. He also showed me on the MRI that I have very little cartilage between by vertebrae. But basically said it’s not inflammatory so lose weight, take pain relief & do some physio. I’ve never felt so dismissed by a medic in my life.

I am overweight (losing now though) but I’m pretty active - daily 40 min walks, Pilates & badminton weekly.

GP prescribed naproxen for the pain & that helps a lot.

My symptoms are;

• severe back pain at top of buttocks and on either hip, which flares up with no apparent cause every 3-4 months
• when it flares up, as well as the pain, I'm unable to bend forward or move properly.
• the flare ups last 10-14 days
• this started when I was aged approx 37-38 (I’m now 43), and it’s getting worse
• i used to be able to control the pain with ibuprofen, then needed a bit of codeine, and I now need naproxen to function when it flares up
• ots much worse in the mornings
• When outside of the flare ups, im extremely stiff in the mornings (spine around top of buttocks), and it eases within 1-2 hours

Ive always felt I have a slightly odd immune system - eczema, cold sores. No idea if related.

Thankyou for sharing.

can I ask what the MRI showed that made it clear that you have it?

My MRI report clearly said I had changes to my bone indicative of AS (bone erosion iirc). That was from the radiologist person. I don’t think rheumatologist would have diagnosed me without those changes being present on the mri. I think very rarely if you have the HLA B27 they might?

I was told it was about changes to the sacroiliac joint on the MRI.

I have suspected AS -
awaiting rheumatologist
suffered with lower back / hip pain
radiating down legs
awful
was overweight
started weight loss injections
lost stone and a half
pain in lower back and hips virtually gone -
nothing like it used to be -
wasn’t expecting that outcome

Your symptoms do definitely line up with AS. Age of onset, worst pain in the morning, the pain location.

I’m not sure how it works in your Trust, but with mine, if a GP refers you to a specialist, the specialist does a sift to decide if they’ll accept your referral. I’m not sure they’d be willing to see you again.

Could you go private?

Love thd cabbage idea

I would look at another rheumatologist again. A woman might be better - no guarantee, but my experience of multiple male consultants has demonstrated dismissal of women.

I have AS and multiple shitty AI conditions.

The gold standard is the MRI. The other stuff is not enough to tell you you don't have it.

The MRI should be a STIR MRI. They look for active inflammation in the spine. The sacroiliac area is key. It's often the primary target of AS. I have evidence of bone erosion there even when no active inflammation. I have however had this for 25 years.

If you're taking naproxen or any anti inflammatory, you want to be clear of it for at least a week before your MRI. It's really frustrating that you can suffer so much and a scan might not show everything.

There are many medication options available. Many private consultants would refer you to NHS treatment on diagnosis.

Exercise, movement and heat are important. Naproxen is helpful, yet use PPIs to protect stomach.

I also have EDS. I wonder if some people have just that. It can cause lots of issues that cause pain and more yet it isn't an inflammatory immune mechanism and therefore inflammation won't show up.

In your position, I'd get the cash together to see the best you can. I've unfortunately had to do this many times and spent thousands. I am however allowed access to the best medications on the NHS.

Just to add - I have an MRI coming up. In order to qualify to try the next lot of medication, the MRI has to show active inflammation in the spine - anywhere. It would also include the sacroiliac area, the area they tend to expect to see something. But it doesn't have to be there. Bony changes are already evident there demonstrating historic inflammation.

Too many antibl inflammatory meds can mess up and disguise MRI results, especially steroids. Not fair really but true.

Bone fusion is a risk with AS. I already have 2 fused vertebrae arseholes. That's unlikely for many especially if it's just started. You'll certainly see that on a scan.

Exercise, exercise and more exercise. You have to keep going with exercise as much as is practical for you. My specialist physio’s advice for the bad days, when everything hurts, is to take 2 paracetamol and do the exercise anyway. Have a look at this app for some ideas.
https://apps.apple.com/gb/app/back-to-action/id470058141

@JoyDivision79 i have EDS as well….never met anyone else with both. Stiff and hypermobile is an interesting combination for sure 🤣🙈

It's the weirdest contradiction 😆. I'm stiff, fused yet can't stay together because of worsening hyper mobility. I'm coming across many more online.

Unfortunately it's the EDS that appears to set the stage for autoimmune disease vulnerability.

One of my family members has AS. Similar profile. Awful for them.

After years of suffering to the point of not being able to walk in a flare up, they saw the GP and had naproxen and steroid injections but didn’t make that much difference. Went privately for a first assessment and checks - the rheumatologist knew almost immediately on looking at him though. So the tests were confirmatory - positive genetics and MRI.

Once diagnosed they were then referred back into the NHS by the rheumatologist for the immunology treatment. Life changing for them with a young family.

my relative is a man though and men’s pain seems to be rarely dismissed right 🙄

Im seeing rheumatology again next week.
I've previously been diagnosed with HSD (hypermobility spectrum disorder) and not hEDS in part due to not scoring as highly as I would have done 10 years ago due to pain and stiffness (I'm 46 now).
I have the gene for AS, but MRI 5 years ago did not show the changes they were looking for.
Im not convinced this isn't either (or both) AS and/or hEDS. With bith of them getting in the way of the diagnosis.
Back issues started when I was 17.
Its changed alot over the years and flair ups look different now and I understand the fatigue and gastric issues alongside a bit better.

The pain and stiffness in sacroiliac joints in the morning, and in the evening once I sit for a while then move, are much more pronounced.
Some mornings I most feel Im so straight (once I've managed to get up!) Im almost leaning back.
Just about every joint has pain at some point.

Any tips for my appt next week?
Ideally I think id like another MRI.
In last year I've also developed new pain in sternum and ribs, which now crack and pop quite a bit.
Lower ribs hurt when im sat later in the day.
Thumbs have been bad and not getting better for months now too.
Oh and my knees have started 'going' unexpectedly too.

@YanTanTetheraPetheraBumfitt
You any tips for a further rheumatology appt (as above).

@Foodyliciousmost don't fully understand or appreciate EDS. Doctors must appear all knowing so are never going to say this.

Will it make a big difference knowing it's EDS? For me it was important. EDS is a defect of collagen. Collagen is everywhere. Every single part of us. When I have had awful gastro problems relating to motility ( too slow, too fast) this won't show on a scan. EDS explains it though. This is important. I have observed more than 2 you g women systemically gaslit in hospital over severe bowel motility problems. It was blindingly obvious to me they had EDS. The body, the fingers, the skin, the history. They suspected themselves. They were both sent psychiatrists.

This is why for me it's important.

My advice is therefore; knowledge ( know all you need to ) and confidence to push back if you believe there's more to this than just being hyper mobile.

With Ank Spond - a STIR MRI is the gold standard to identify inflation. You could also be looked for any bone changes at all, erosion for example.

Confidence is the number one thing tbh and hoping they know what they're talking about and not arrogant docks like so many.

If they say it isn't important etc, yes it is. There are numerous treatments for Ank Spond.

Ref EDS, yes, for my sanity I had to know this. The gastro team at my teaching hospital have some scary consultants but I've been lucky that mine always mentions and acknowledges the EDS impact ( as well as the IBD).

I would be very clearly stating you want another MRI as the last one was so long ago and there could be bone erosion now which wasn’t visible previously.

if the mri is still negative I’d ask about non radiographic AS seeing as you have the gene and symptoms. I think that’s the right term? I see some people on the fb groups talking about it and they got a diagnosis due to the gene and symptoms even though scans and X-ray don’t show any evidence.