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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 - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
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

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