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Re: Question to those who switched biologics [Re: seymour] #280608
06/22/18 02:13 PM
06/22/18 02:13 PM
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SouthernMoss, I really should make an account. My mom doesn't really use this one though, so I wonder if there is some way just to change my username.

Seymour, considering your pain has increased, I bet your rheumatologist will monitor you carefully. You also have to remember that AS is a SLOW disease. It takes years to fuse. My SI joints have been fusing for 6 years. Since I have been on biologics that whole time, they haven't fully fused.

In early studies, they thought biologics did not prevent disease progression. Later they realized that those studies were too short - only two years long. So it looked like biologics were not preventing progression and might even be increasing it. But when they looked at studies that went for 5-10 years, the effects of biologics were MUCH more clear. They very clearly reduced the odds of progression by 50% or so.

My point is really that you won't fuse overnight. Especially considering you are on a biologic. I would really push for an MRI of your neck simply for your peace of mind. It will show if there is inflammation and how much (if there is inflammation at all). Pain can come from many sources. Nobody here is denying that you are in pain - clearly you are. All we are saying is that it may not be AS, and even if it is AS, it's better not to freak out! The pain is REAL - whether it is muscular, anxiety related, inflammatory or simply postural.

Losing ROM does not necessarily mean you are fusing. It could simply mean you have very tight muscles. With my neck, I have also lost ROM but my PT thinks it's because my trapezius muscles are so tight. He expects my ROM to increase as I continue with PT.

I agree with SouthernMoss about taking an NSAID regularly. There are LOTS of NSAIDs and I had to try about 12 before I found the right one. Celebrex is known to be easiest on the stomach. Mobic is also used a lot. I take my NSAID with a PPI - if I don't, I get gastritis. For me, dealing with gastritis periodically is worth it for the pain relief I get with NSAIDs.

Re: Question to those who switched biologics [Re: seymour] #280612
06/22/18 05:25 PM
06/22/18 05:25 PM
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Hey CBDaughter wink

Actually, when my neck is more restricted my trapezius hurts near the shoulders when I turn my head from side to side. I always feel like the restriction comes from the occipital region, from ligaments rather than the actual cervical vertebrae. I can hear crunching noises in the occipital muscles and that's where it feels like it's blocking. If I move my head while feeling my cervical spine with my finger I can feel the vertebrae move.

That's what I told my rheumy in 2012 and she said she believed it may come from fusion, then we did X-rays and I had zero fusion, not even beginning. I may have permanently damaged some soft tissue I don't know. Most of that lost ROM never came back on my right side even on biologics but my left side almost went back to normal. Same thing with looking up and tilting.

Also if I push with my hand I can almost reach full ROM. But my muscles alone cant do it.

Thanks for reminding me that AS is slow. I'm always afraid that while my treatment is less effective I'm having permanent damage and progression and that's why I'm on a hurry to try something else!

I know some never fuse...

Last edited by seymour; 06/22/18 05:26 PM.
Re: Question to those who switched biologics [Re: seymour] #280617
06/22/18 09:17 PM
06/22/18 09:17 PM
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I have the same issue with my lumbar spine. No fusion but basically no movement. When I bend down to touch my toes, I bend from my thoracic spine. My lumbar spine stays flat and just doesn't bend. Apparently, that is a feature of AS. There's not really anything I can do about it except keep up with PT. PT hasn't actually increased my mobility but helps with the pain.

Since besides PT there is nothing I can do, I figure no point in worrying about it!

Have you tried PT for your neck? Or trigger point injections? Those helped me a lot with pain.

seymour, do you have radiographic evidence of sacroiliitis on your x-rays? Erosions, sclerosis etc.? Because if you don't, then you don't actually have AS, you have axial spondyloarthritis. Many people with axial spondyloarthritis NEVER progress to AS. I can't remember what percentage - let me see if I can find it.

Just wondering...figured if it is non-radiographic axial SpA, that might ease your worries about fusion!

I also want to add that my dad does have fusion in his neck. He also has fully fused SI joints and has had many hip replacements, starting at 32 (or maybe 34, I can't remember). He works full time, travels for work a lot, gardens and lives a full life. His philosophy is to just ignore the AS and live his life. I'm not saying anyone should ignore their AS - they should certainly see their rheumatologists regularly and stay on their medications and stretch and exercise. But there is no point focusing all your energy on what might happen.

But I've learned to focus on what I can do vs. what I cannot do. I'm a twin and have not graduated from college yet. My twin is healthy and has graduated from college and is working full time. I have AS and inflammatory bowel disease and a number of other conditions. I've had to take 2.5 years off from college to get my health under control. It's hard. And it's not fair. But it is what it is. And I try my best not to dwell on it.

Re: Question to those who switched biologics [Re: CBMom] #280618
06/22/18 10:03 PM
06/22/18 10:03 PM
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Originally Posted by CBMom
SouthernMoss, I really should make an account. My mom doesn't really use this one though, so I wonder if there is some way just to change my username.


I'll bet one of the moderators or the forum admin could change it.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Question to those who switched biologics [Re: seymour] #280619
06/22/18 10:22 PM
06/22/18 10:22 PM
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I think I'm actually improving. My anxiety is much less and this dialogue with you and the other good people here has helped me tremendously. I've always been someone who's worried about the future even before I had AS. This disease will kinda force me to live in the now and change my way of thinking.

I do have AS. In 2012 after about 3-4 years of symptoms my x-rays showed erosion in my sacroliliac joint on one side. The rest of my spine was clear. I was put on Enbrel two months later and I'm still on it to this day. I barely had any pain until it started creeping back about two months ago.

My ROM is normal in my spine for all movements, and strangely my lumbar spine movement is even above average. I can touch the floor without bending my knees.

My neck has always been my main concern. It's the part that's most affected even though I didn't have any radiographic evidence in that region in 2012. I have about 80 degrees rotation to the left, 45 degrees to the right, with normal up and down and nearly normal tilt. But when I'm flaring it's the first section that loses motion. I always feel like my muscles, tendons and ligaments are very tense, almost calcified.

I normally don't have pain in my neck if i'm not stretching it while flaring. On a normal day it's just tight but painless.

I'm scared about my neck because I think it's the thing that people will notice the most. If you can't turn your head at all people start asking questions that I don't want to answer. And I think a stiff neck gives someone an odd look. It's stupid I know. And superficial.

Does your dad have any movement in his neck? Has he been fused for a long time?

Thanks for talking to me. Your posts do help. A lot. I wish you the best. smile

Re: Question to those who switched biologics [Re: seymour] #280622
06/23/18 03:44 PM
06/23/18 03:44 PM
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Yes! He can turn it a little. But when he's driving, he turns his body as well as his neck. I don't think most people notice his neck. His shoulders are a little bit hunched and his neck is sort of forward, but besides that, he looks normal. I really don't think most people even see it. But my neck is the same - hunched and sort of forward. Can't say if it's fused or fusing because it's the one place I've never had x-rays of.

But my ROM is worse than yours - it is 30 degrees to the left, and 45 to the right. My physical therapist thinks I can improve my ROM with PT but does want me to have x-rays. Right now I'm just focusing on the PT and assuming it is postural and weak muscles. When I next see my rheumatologist, I'll have the imaging done.

If you had calcifications, I think you'd see them on x-rays. Honestly, I think you should do the imaging your rheumatologist is offering. It's better just to know than to torture yourself with uncertainty. And if there is progression, then you and your rheumatologist can discuss next steps - upping Enbrel or switching biologics. I don't think she can do that unless she has some concrete info that you're flaring.

And I'd focus on the good things - your lumbar spine is doing great and your SI joints aren't bothering you. You can even touch your toes! I can barely go past my knees. I don't mean to minimize what you have been through, just to point out that actually, overall, things aren't so bad.

Re: Question to those who switched biologics [Re: seymour] #280623
06/23/18 04:07 PM
06/23/18 04:07 PM
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Well even if I don't have progression on my x-rays, I think my rheumy should be able to believe me when I tell her that I don't feel well. She should know that it can take months and years for bloodwork to change. She shouldn't tell me I'm stuck with my current situation unless my x-rays are bad!

She hasn't done that, but you see what I mean. X-rays are one thing, symptoms are another. If a patient comes in and tells their rheumy that they have lots of symptoms coming back, then the doctor should offer something. I mean she could make a case that x-rays are important for whatever, but regardless of the results the only thing she can do is switch biologics or add something to my treatment.

But you're right in a sense. I'm kinda stuck in this bad place where symptoms come back, I KNOW something is brewing, but I don't have anything to show for it yet except my BASDAI would definitely reflect more active disease. Do I really have to get to where I was pre-diagnosis before we change treatment?

I never heard that radiographic progression was a pre-requisite to switching meds.

Re: Question to those who switched biologics [Re: seymour] #280625
06/24/18 11:35 PM
06/24/18 11:35 PM
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Not radiographic progression, but some concrete evidence of active inflammation. My rheumatologists (both pediatric and adult) have done MRIs when I have had flares. For me, it's my SI joints and hips that are the problem, so those are the MRIs they do. If there is active inflammation, generally they changed my medications or increased their doses.

The problem is that without an MRI, it is really difficult to tell if there is active inflammation in someone's SI joints/spine. Especially since back pain can be a lot of things.

So most rheumatologists would want to see some evidence of a flare. Your CRP and ESR are currently normal, which is probably why your rheumatologist is not doing anything. I'm not saying that is right of her - a lot of people with AS (roughly 40%) have normal CRPs and ESRs. But I guess since initially your CRP was elevated before treatment, she's looking at that.

I would ask her for a neck MRI. You're right that x-rays will not show anything but radiographic progression. But an MRI will show active inflammation if it is there. Even soft tissue inflammation - enthesitis etc.

I think the official recommendations say that you need either an elevated CRP OR an MRI with inflammation of the SI joints to be diagnosed with non-radiographic axial SpA.

Similarly, I think you probably need one of the two plus symptoms for your doctor to take you seriously. It's possible that she thinks you're worried unnecessarily.But if an MRI shows inflammation, she has to do something and I bet she will.

Re: Question to those who switched biologics [Re: seymour] #280628
06/25/18 03:38 AM
06/25/18 03:38 AM
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It is perhaps a bit early to say that she isn't doing anything. When I last saw her a month ago, she tested my ROM and looked at my lab results (from a month before) and I didn't really push for more as it wasn't as bad then. And I guess I wanted reassurance. So I didn't insist.

When I see her again next Tuesday she'll have lab results from last week and I'll explain to her that I've been having a lot of pain in different parts of my body. And this time I'll push the fact that I know they're AS-related as I've been down that road before.

If she insists on an MRI (which she never proposed), I guess I'll do the MRI. Normally though when we see each other she checks my lab results but she makes me do the BASDAI too as she feels that inflammation in the blood and what the patient experiences can be different. I mean I guess she has to trust me a bit. At the end of the day I'm the one with the disease.

I will say though that for the past 3-4 days I've been feeling way better. Not great, but better. My body still isn't like it was 3 months ago, but it's way better than last week. Is it a flare subsiding or just the calm before the next storm, who knows!

Re: Question to those who switched biologics [Re: seymour] #280647
06/26/18 07:00 PM
06/26/18 07:00 PM
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So I saw my rheumy.

Lumbar movement: above average
Hip movement: above average
Neck: no change from my usual
Thoracic expansion: perfect
Spine and SI not sore when touched
CRP: 0,4
Sed rate: normal

She thinks my pain is either muscular, mechanical or a small flare. She says she really does not think it’s a major AS comeback. She prescribed an MRI to make sure but she doubts it will reveal major inflammation. If it does we’ll try Humira.

We adressed my anxiety. She told me very bluntly: "In 2018, diagnosed as early as you were, your AS should not cause you any anxiety. We have many treatments down the pipeline and I can almost guarantee that you will never see extensive fusion or be stooped."

I was shocked. It was so reassuring. She also told me that after 10 years of symptoms I would very likely know it already if I had a severe case.

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