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Re: AS without lower back pain? (& other concerns) [Re: Alex140] #282213
12/11/18 08:56 PM
12/11/18 08:56 PM
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Welp, my doctor took me off of enbrel and put me on cosentyx. Here's hoping this one actually works. Apparently, it's a relatively new drug that works somewhat differently from other biologics? I'm a bit fuzzy on the details.

Re: AS without lower back pain? (& other concerns) [Re: Alex140] #282215
12/11/18 09:14 PM
12/11/18 09:14 PM
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Originally Posted by Alex140
Welp, my doctor took me off of enbrel and put me on cosentyx. Here's hoping this one actually works. Apparently, it's a relatively new drug that works somewhat differently from other biologics? I'm a bit fuzzy on the details.


Cosentyx is different because it is not a TNF inhibitor like the other biologics used to treat AS. Instead, it is an IL-17 inhibitor. So it blocks a different inflammatory cytokine.

I hope it works well for you.


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: AS without lower back pain? (& other concerns) [Re: Alex140] #282219
12/14/18 06:27 PM
12/14/18 06:27 PM
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Alex, don't worry about getting an additional diagnosis of fibromyalgia. I've been diagnosed with fibromyalgia for probably 18 years and AS for 29 years now. To me, both are part of the same disease process affecting my body. The doctor also says I have osteoarthritis, which the AS makes worse, but I can't tell which disease process is causing my pain, and in essence, it doesn't matter. Treatments are different depending on the diagnosis, yes, but the most important thing is just finding a treatment that works, no matter what anyone says is causing the pain.

To me, the quibbling about whether it's reactive arthritis (in the U.S., RA is rheumatoid arthritis) or AS or psoriatic arthritis is besides the point. As Ginny said, all the spondyloarthropathies share symptoms. I've never had psoriasis, for example, but my fingernails are all messed up. Again, what matters is finding a treatment that works for MY individual symptoms.

Alex, don't be too quick to reject vitamin supplements. I was B-12 deficient for a long time and B12 supplements (monthly injections) made the tingling in my toes stop. B12 deficiency can also stem from other health problems, such as undiagnosed celiac disease. Also, long-term use of acid-blocking medications can make you deficient in magnesium, which can affect your heart, among other things.

What I do see from reading all the previous posts is that the people who are HLA-B27 negative, like you, Alex, and a few others (including me), is that the disease we suffer is different than it is for those who are HLA-B27 positive. I have a brother who is HLA-B27 positive and has AS, but he has never experienced all the peripheral joint problems I have. It's mostly in his spine. Possibly, the disease we have is triggered in a different way than it is for those who are HLA-B27 positive. I didn't get arthritis symptoms right away, but I nearly died from a ruptured appendix and the resulting infection as a teenager. So do I actually have reactive arthritis that morphed into AS? Who knows? Only researchers can determine the answers to these questions.

The main thing, Alex, is to know it's okay to grieve for your loss of ability to play video games. I still wish I could ice skate! AS (or whatever you have) will affect your life in many ways. It can be very depressing at times. Just keep in mind that you are still alive (albeit in pain) and life has a multitude of fun activities to explore and enjoy. You are being reborn as a new and different Alex.

Re: AS without lower back pain? (& other concerns) [Re: Alex140] #282240
12/18/18 06:21 AM
12/18/18 06:21 AM
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So... I take it you never found a way to treat the pain? I appreciate you trying to make me feel better, but honestly the idea that I need to just accept what is happening to me as a new stage in my life is extremely depressing, especially since it's gotten worse to the point where I can't work anymore. It's not just that I can't play games, I can't engage in almost anything I'm even good at, which utterly destroys any career aspirations I could have had. As long as this problem remains unsolved (or at least untreated), my life is effectively ruined, so until it's totally confirmed that nothing can be done, I refuse to accept things as they are.

Re: AS without lower back pain? (& other concerns) [Re: Alex140] #282546
02/03/19 03:07 AM
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Well, I guess the thread title no longer applies. Now, I occasionally get lower back pain that radiates into my right knee, which makes bending over a horrible experience. But this only lasts for a few days at a time, on and off.

The sulfasalazine still doesn't seem to be doing anything after nearly 3 months, and it's probably too early to say whether the cosentyx will work. If neither of these work, is there still a decent chance that I can find something that will? Do the other DMARDs and biologics (aside from enbrel) work differently enough that trying them out is worth it? Because if not, I'm probably screwed, unless there's some other form of treatment I'm not aware of.

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