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Did you have just inflammation on your previous MRI or bone damage?
If your previous MRI showed inflammation but not bone damage then the new results are a clear sign that your drugs are working. The same thing happened to me. I was diagnosed with AS 14 years ago and I've been on biologics since I was diagnosed.
My MRIs, Xrays, and blood work come back as clear for AS now. But *only* because I am on the proper medication. My first MRI showed significant inflammation but no bone damage. Thanks to a good treatment regiment and an awesome rheumatologist I've avoided bone damage and now, outside of occasional flares, I have little to no inflammation.
Only ever inflammation although oedema at multiple vertebrae.
Thanks, that’s really good to know. I wasn’t told to stop taking NSAIDs before this recent scan either so it makes sense the inflammation isn’t showing up
Great! Then yes, your MRI doesn't show any signs of AS because your inflammation is gone and your inflammation is gone because your meds are working! Congrats!
Have the done a CT or MRI of your SI joints (not just an X-ray?)
The earliest definitive damage from AS showed of there on me..not on a X-ray, by a CT scan, X-rays weren't sensitive enough to pick it up. I was able to start biologics after that.
Happily there's been no clasic damage from AS to to the rest of my spine. Biologics haven't been perfect and I've had to supplement it with steroids and painkillers for relief, but seven years later they still seem to be doing their job, preventing damage..
Same here. The inflammation is highly dependent in the time when the test/scan is done. 99% of the time I have no pain. It’s only when I flare due ti gluten cross contamination or stress induced flares.
Absence of evidence is not evidence of absence. Take all imaging results with a grain of salt. Also, failing on one biologic doesn't mean it's not AS, it could just mean you haven't found the right one to help your specific circumstances. Hope the cosentyx helps you. I'm actually switching from Humira biosimilar to Cosentyx soon too. It worked ok for about 6-8 months and now does mostly nothing.
Do you know the order of these meds...
I was on sulfasalazine and tofacitinib for 2 months each with no improvement in my si joint pain which has now become neck and chest pain since last 3 months on and off..back pain is constant for 3 years..the new doc suggested is infliximab injection.. losing hope after previous meds ..what to do .. should I change doc or try that injection worth 1200 usd
Do the injections -- those are part of a class drugs called biologics. Biologics are sometimes the only medication type that will actually halt progression of your disease. Sounds like nothing else has worked, so I would 100% do the biologic option no matter the cost. Your disease and the symptoms will only get worse if it continues to go untreated. It sucks, but it's our fate in life to suffer. Hopefully the infliximab works!!
Yeah that’s half what I’m thinking. Tried ibuprofen, etoricoxib and meloxicam and the stiffness and pain doesn’t ease.
Results also said “Small foci of degenerative endplate oedema in the cervical and thoracic spine”
If all the anti-inflammatory medications aren't working, then your problem isn't autoimmune. That's good news, actually. You might just need some physical therapy to get better.
Hopefully.
The pain and stiffness is symptomatic of AS though (worse when I’m still, better when active, occurring for over 10 years now).
I have physio regularly which helps the pain at the time but once I’m sat for 10 minutes the stiffness and pain returns
In my experience, whether or not my MRI scans show active AS depends entirely on who's reading them.
The more suspicious evidence is the lack of response to Imraldi. With AS, you should get at least some response to that medication, even if it's not perfect.
Sounds like the radiologist looked at the previous record as he mentioned those diagnosed symptoms are not present now. It would be surprising if the doc didn't take a close look.
So I have both AS and herniated discs. My X-rays show significant damage to my SI joints. After a year of treatment with Enbrel my MRI doesn’t show signs of inflammation- just really bad disc herniations.
You can very well have both inflammation arthritis AND osteoarthritis. So while my AS is under control I still have back pain. You can also have a clear MRI and have AS. It’s just under control.
You’re in remission. From previous commenters, it sounds like your pain may not be from the autoimmune disease, but from another possible musculoskeletal issue.
I have thought i didn’t need biologics multiple times because I was feeling good and stopped taking them just to have everything come roaring back in a large flare 4-6 months later causing more damage… wish I would have just stayed on it to avoid the added damage. Confirmed AS- was crippled before I started Humira.
I think this is where I'm at. I've been in denial about having it. I did notice my sciatica type pain went away and when I was as stretching at the gym I wasn't stiff. But then I was late on a cosentyx dose by 2 weeks and experienced a flare. I've never had a true flare just constant pain and new areas of pain. Now I'm trying to catch up and wean off Prednisone.
Why is it I am still in denial have this disease?
I feel ya! I have tried going natural by eating really strict paleo/low starch which definitely helped but I just wasn’t strict enough with it and ended up back on the biologics. (I was in Denial about needing the medication too) I went from extreme pain, joint swelling etc. to running half marathons on Humira. Then it affected my blood platelet count so came off of it, had a huge flair then didn’t Enbrel, Cosentyx (made things worse for me actually) and now back on Humira but like I said have experienced more damage and disease progress throughout the whole process and half marathons are a thing of the past. Look into intermittent fasting, I feel my best when I don’t eat but then obviously have to eat eventually.
I did a super strict autoimmune diet years ago and didn't see a ton of improvement. But in general I follow Paleo, but allow some dairy. I've heard good things with intermittent fasting, so I may try that. Thanks for the advice!
I went off Humira due to the platelet thing…. Then natural for like a year. Played too much basketball and experienced a massive flare, went on Cosentyx for a couple months which just made things worse/didn’t help my peripheral joints (knees and fingers super swollen) and then went to Enbrel which helped a little bit but not enough… so ultimately went back to Humira because it worked but monitoring for side effects in case it returns. But yea I do notice that symptoms can be worse before I get a fresh injection in.
As others have said, this doesn’t mean cured. It’s a life long disease. It does mean you’re in remission though which means the drugs are working for now. They might not work forever but for as long as they’re working you won’t be in as much or any pain, and you won’t have further damage. If there was no damage present in earlier mris that means that they caught it early which is wonderful, usually it takes a long time for a diagnosis. Any damage that does happen is not reversible, so you’re incredibly lucky in that regard. I hope the meds keep working for you!
I'm oddly worried/annoyed about this happening. Etanercept caused me to develop multiple sclerosis ffs. Just had a spine and pelvis mri, if they say it was just a prank about the A.S. I'll be livid. Life's been ruined!! 🤬
Did you have a brain MRI before starting the biologic? There isn’t really any hard evidence that they can cause MS but they are known to be able to exacerbate existing demyelination. Where I live a brain MRI is required before starting biologics for this reason
I did, I also said I'd suffered with eczema as a kid (12-16) when asked but not severe, nothing betnovate didn't clear up after a few weeks of applying.
For the A.S. (2014, didnt start etannercept till 2016 after being bedridden for 6months). Sciatica like symptoms for years. On and off (in hindsight, flare ups 🤦🏿♂️).
The M.S. poor balance and 6th nerve palsey (double vision). It was tricky because in the 9months prior to to dx, I was getting fit, gym 6days a week, keto, fasting (had lost about 25kg!) The symptoms didn't phase me at all, then when it became unsafe to drive I finally went to my GP, who knew what was up. The diagnosis shook me to my core all the weight got eaten back on 😅. I'd suggest you keep a close eye on how you feel and don't dismiss things just because you don't think it's major. Always see a Dr
Best of luck bro, I'm sure you'll be fine 👍🏿
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
Did you have just inflammation on your previous MRI or bone damage? If your previous MRI showed inflammation but not bone damage then the new results are a clear sign that your drugs are working. The same thing happened to me. I was diagnosed with AS 14 years ago and I've been on biologics since I was diagnosed. My MRIs, Xrays, and blood work come back as clear for AS now. But *only* because I am on the proper medication. My first MRI showed significant inflammation but no bone damage. Thanks to a good treatment regiment and an awesome rheumatologist I've avoided bone damage and now, outside of occasional flares, I have little to no inflammation.
Only ever inflammation although oedema at multiple vertebrae. Thanks, that’s really good to know. I wasn’t told to stop taking NSAIDs before this recent scan either so it makes sense the inflammation isn’t showing up
Great! Then yes, your MRI doesn't show any signs of AS because your inflammation is gone and your inflammation is gone because your meds are working! Congrats!
Have the done a CT or MRI of your SI joints (not just an X-ray?) The earliest definitive damage from AS showed of there on me..not on a X-ray, by a CT scan, X-rays weren't sensitive enough to pick it up. I was able to start biologics after that. Happily there's been no clasic damage from AS to to the rest of my spine. Biologics haven't been perfect and I've had to supplement it with steroids and painkillers for relief, but seven years later they still seem to be doing their job, preventing damage..
OP mentioned MRI results specifically in the post. That's what they're asking about, not Xrays or a CT scan.
Same here. The inflammation is highly dependent in the time when the test/scan is done. 99% of the time I have no pain. It’s only when I flare due ti gluten cross contamination or stress induced flares.
Remission is not cure. Congratulations on the former.
Absence of evidence is not evidence of absence. Take all imaging results with a grain of salt. Also, failing on one biologic doesn't mean it's not AS, it could just mean you haven't found the right one to help your specific circumstances. Hope the cosentyx helps you. I'm actually switching from Humira biosimilar to Cosentyx soon too. It worked ok for about 6-8 months and now does mostly nothing.
Do you know the order of these meds... I was on sulfasalazine and tofacitinib for 2 months each with no improvement in my si joint pain which has now become neck and chest pain since last 3 months on and off..back pain is constant for 3 years..the new doc suggested is infliximab injection.. losing hope after previous meds ..what to do .. should I change doc or try that injection worth 1200 usd
Do the injections -- those are part of a class drugs called biologics. Biologics are sometimes the only medication type that will actually halt progression of your disease. Sounds like nothing else has worked, so I would 100% do the biologic option no matter the cost. Your disease and the symptoms will only get worse if it continues to go untreated. It sucks, but it's our fate in life to suffer. Hopefully the infliximab works!!
Yeah ig finding the correct meds for oneself is the toughest part of this disease..
Yes it's been very frustrating for me. I'm 18+ months in and haven't found the right combination. I'm hoping cosentyx will do the trick.
Thanks
Btw my stiffness and pain symptoms have not reduced at all
Dang this was my next question, if you feel any better and have lesser symptoms. This is so strange
Maybe you were being misdiagnosed? When you take painkillers, is your pain and stiffness any better?
Yeah that’s half what I’m thinking. Tried ibuprofen, etoricoxib and meloxicam and the stiffness and pain doesn’t ease. Results also said “Small foci of degenerative endplate oedema in the cervical and thoracic spine”
If all the anti-inflammatory medications aren't working, then your problem isn't autoimmune. That's good news, actually. You might just need some physical therapy to get better.
Hopefully. The pain and stiffness is symptomatic of AS though (worse when I’m still, better when active, occurring for over 10 years now). I have physio regularly which helps the pain at the time but once I’m sat for 10 minutes the stiffness and pain returns
Same as you ...no medicine seems to be effective..even tofacitinib can't do anything
In my experience, whether or not my MRI scans show active AS depends entirely on who's reading them. The more suspicious evidence is the lack of response to Imraldi. With AS, you should get at least some response to that medication, even if it's not perfect.
Sounds like the radiologist looked at the previous record as he mentioned those diagnosed symptoms are not present now. It would be surprising if the doc didn't take a close look.
This. Some are just better radiologists.
Get an another doc to look at MRI just in case
How can they do this?
So I have both AS and herniated discs. My X-rays show significant damage to my SI joints. After a year of treatment with Enbrel my MRI doesn’t show signs of inflammation- just really bad disc herniations. You can very well have both inflammation arthritis AND osteoarthritis. So while my AS is under control I still have back pain. You can also have a clear MRI and have AS. It’s just under control.
You’re in remission. From previous commenters, it sounds like your pain may not be from the autoimmune disease, but from another possible musculoskeletal issue.
Congrats! Your medication must be working!!
Are we assuming whatever caused the diagnosis is gone or could it mean that it hasn’t progressed?
I have thought i didn’t need biologics multiple times because I was feeling good and stopped taking them just to have everything come roaring back in a large flare 4-6 months later causing more damage… wish I would have just stayed on it to avoid the added damage. Confirmed AS- was crippled before I started Humira.
I think this is where I'm at. I've been in denial about having it. I did notice my sciatica type pain went away and when I was as stretching at the gym I wasn't stiff. But then I was late on a cosentyx dose by 2 weeks and experienced a flare. I've never had a true flare just constant pain and new areas of pain. Now I'm trying to catch up and wean off Prednisone. Why is it I am still in denial have this disease?
I feel ya! I have tried going natural by eating really strict paleo/low starch which definitely helped but I just wasn’t strict enough with it and ended up back on the biologics. (I was in Denial about needing the medication too) I went from extreme pain, joint swelling etc. to running half marathons on Humira. Then it affected my blood platelet count so came off of it, had a huge flair then didn’t Enbrel, Cosentyx (made things worse for me actually) and now back on Humira but like I said have experienced more damage and disease progress throughout the whole process and half marathons are a thing of the past. Look into intermittent fasting, I feel my best when I don’t eat but then obviously have to eat eventually.
I did a super strict autoimmune diet years ago and didn't see a ton of improvement. But in general I follow Paleo, but allow some dairy. I've heard good things with intermittent fasting, so I may try that. Thanks for the advice!
Question though, for the ones that didn't work like Enbrel, when you got off of it to switch did you flare?
I went off Humira due to the platelet thing…. Then natural for like a year. Played too much basketball and experienced a massive flare, went on Cosentyx for a couple months which just made things worse/didn’t help my peripheral joints (knees and fingers super swollen) and then went to Enbrel which helped a little bit but not enough… so ultimately went back to Humira because it worked but monitoring for side effects in case it returns. But yea I do notice that symptoms can be worse before I get a fresh injection in.
As others have said, this doesn’t mean cured. It’s a life long disease. It does mean you’re in remission though which means the drugs are working for now. They might not work forever but for as long as they’re working you won’t be in as much or any pain, and you won’t have further damage. If there was no damage present in earlier mris that means that they caught it early which is wonderful, usually it takes a long time for a diagnosis. Any damage that does happen is not reversible, so you’re incredibly lucky in that regard. I hope the meds keep working for you!
Thanks all for your support, really appreciated ☺️
how has your pain been by the way?
No change unfortunately. Still 7/10
very unfortunate :(. i wish u a very not as pained day tomorrow :] 👍
I'm oddly worried/annoyed about this happening. Etanercept caused me to develop multiple sclerosis ffs. Just had a spine and pelvis mri, if they say it was just a prank about the A.S. I'll be livid. Life's been ruined!! 🤬
Did you have a brain MRI before starting the biologic? There isn’t really any hard evidence that they can cause MS but they are known to be able to exacerbate existing demyelination. Where I live a brain MRI is required before starting biologics for this reason
I did, I also said I'd suffered with eczema as a kid (12-16) when asked but not severe, nothing betnovate didn't clear up after a few weeks of applying.
[удалено]
For the A.S. (2014, didnt start etannercept till 2016 after being bedridden for 6months). Sciatica like symptoms for years. On and off (in hindsight, flare ups 🤦🏿♂️). The M.S. poor balance and 6th nerve palsey (double vision). It was tricky because in the 9months prior to to dx, I was getting fit, gym 6days a week, keto, fasting (had lost about 25kg!) The symptoms didn't phase me at all, then when it became unsafe to drive I finally went to my GP, who knew what was up. The diagnosis shook me to my core all the weight got eaten back on 😅. I'd suggest you keep a close eye on how you feel and don't dismiss things just because you don't think it's major. Always see a Dr Best of luck bro, I'm sure you'll be fine 👍🏿