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Re: Question to those who switched biologics [Re: seymour] #280561 06/14/18 05:55 PM
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I just can't afford to spend my life being scared of my disease progressing. It's a waste of emotional energy.


I agree with this 100%.

'm glad your anxiety is settling down. Let us know what your rheumy says at your next visit.


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] #280563 06/14/18 07:44 PM
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seymour Offline OP
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I will although I don’t expect much if my CRP isn’t elevated. She seems to be obsessed by CRP...

She wanted me to do x rays but frankly I don’t see the point. I’m already on biologics so at this point knowing that I progressed could only scare me and wouldn’t change my treatment.

I couldn’t deal with bad news right now.

Re: Question to those who switched biologics [Re: seymour] #280572 06/17/18 01:29 AM
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Why don't you ask for an MRI? That will tell you if there is active inflammation. It's possible to have your CRP/ESR change. For example, I was diagnosed at 14 with juvenile spondyloarthritis (I'm on my mom's account!) and never had an elevated CRP or ESR. Around 18, my x-rays showed that I had progressed to AS.

At 22, my CRP suddenly started showing inflammation. It has now been elevated for two years roughly, but it goes up and down. So for me, 38 is really bad (range is 0-4 at this lab) but 7-8? Not so bad. It's all about what your normal is. We have never been able to get all my inflammation under control, so my CRP is always high. So we aim for the best control possible.

Before I had an elevated CRP I would have MRIs when I had a flare that lasted several months. Those generally showed either structural progression or inflammation. I went from Enbrel, to Humira, to Humira + MTX, to Remicade +MTX, to Simponi + Arava (at that point I developed inflammatory bowel disease) and then back to Humira because it was the one that worked best for me. I won't bore you with my long complex history, but because I ran out of options, I tried quite a few anti-TNFs twice. They did work the second time - in fact, some worked better the second time because I was given a higher dose (Remicade for example). They all worked for a while. Humira was like magic and lasted two years, but besides that, the others didn't work that well and didn't last that long and I was on steroids constantly.

Then I switched to Cosentyx (+ Imuran for the IBD) because it works differently - it's an IL-17 inhibitor, not an anti-TNF. It worked really well but I still struggle with pain, and need opioids to be able sit, stand, walk and sleep through the night. The pain is from damaged and fusing SI joints and damage in other joints. I'll be having a major surgery this year to attempt fix one of my peripheral joints. If that doesn't work, I will need a replacement.

But currently, the inflammation is mostly under control, which for me is fantastic!! My CRP has been sky high for two years, so this is good.

I guess all I'm trying to say is how you think about your situation matters. And that you shouldn't lose hope if your first biologic does not work or if the effects wear off. I am 24 now and can also get anxious, especially when I think of the future. But my dad has AS and has fused sacroiliac joints, some fusion in his neck and has had several hip replacements. He has significant fusion because of course biologics weren't available when he was diagnosed. He has still lived a good life and worked full time and still works full time. So I figure that it is possible. I do have a few joints that are damaged, but it's nothing like my dad's situation because we are lucky enough to live when biologics are the standard treatment for AS.

It is of course harder to think rationally when you are in pain. I would suggest seeing a psychologist. You have really change the way you think because not only can anxiety make pain worse, it can take over your life.

Re: Question to those who switched biologics [Re: seymour] #280573 06/17/18 04:28 PM
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You are right, I shouldn't lose hope, but it's hard.

Actually my first TNF worked for almost six years and got rid of 95% of the pain.

I guess I should consider myself lucky that I'm responding so well and look forward to a good response with the next med.

Re: Question to those who switched biologics [Re: seymour] #280574 06/17/18 07:24 PM
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It actually is a good sign that you responded so well to the first anti-TNF. It means you're more likely to respond well to the next one. And you should consider yourself VERY lucky that it worked that well for you.

Don't lose hope!! There are several more biologics out there and more in trials. And you don't know if you're flaring or if your pain is muscular or from something else. Just because you have AS or axial SpA it doesn't mean ALL back pain is from that. For example, I have a lot of muscle spasms and back pain unless I do regular PT and exercise.

Last edited by CBMom; 06/17/18 07:27 PM.
Re: Question to those who switched biologics [Re: seymour] #280575 06/17/18 08:11 PM
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I did not know that responding very well to the first anti-TNF increased the likelihood of responding well to the others. I guess it makes sense though, because it probably means that my body or my "version" of AS is more TNF-mediated.

I'm wondering though, does loss of response to the first TNF predict eventual loss of response to the next ones? I don't think you can predict anything at all but I'm still wondering.

I thought about my pain being muscular or something else but the fact that it affects my neck, upper back, legs and lower back intermittently really makes me think it's AS. It's not like one spot or one movement that would trigger pain. It's the full package. Although I'll say that rotating my shoulders hurts my back and that the pain is worst near my shoulder blades. But it's not JUST there.

Anyhow thank you for talking to me and saying positive stuff. It really does help me.

Re: Question to those who switched biologics [Re: seymour] #280583 06/19/18 05:20 AM
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Not so much that the flare lasted months--probably 8-10 weeks, with intensity going up and down at the upper side of the scale. Winter is my worst time of year (actively looking for a warmer place to move for retirement in about 5 yrs). I wasn't in a flare the whole time on the med.

Don't feel ashamed--ever. People ask questions and others try understand the whole picture when we don't have the entire story. When there is face-to-face discussion, those details are worked out more easily. On a message group, it's not as easy. It might take a couple of posts to get it worked out. No one's fault there...it is what it is. Please don't feel bad about it.

If you don't want to get x-rays, don't do it. Wait till after you see the rheumy. Wait till you have that face-to-face time to make sure you understand each other. If your labs are fine and your pain levels are okay and your ROM is fine, I agree--doesn't seem useful right now. Talk to the doc and see what the next plan will be. Hope the appt goes well for you and you get the answers you need to reduce the anxiety some. Your post on 6/11 seems like your anxiety is better. You will get the hang of your new normal and figure out how your body is working with this disease. All of us went through this and worried more than we needed to for a time. Keep asking questions when you need reassurance. That's what this group is for.


Psoriatic Arthritis, Osteoporosis HLAB27+
MTX, gabapentin, strontium citrate
Cosentyx from Oct to Dec 2017. Then back to Cimzia in May 2018.
Already tried Remicade, Enbrel, Simponi, Humira, Cimzia, Cosentyx.
Re: Question to those who switched biologics [Re: seymour] #280588 06/20/18 03:43 PM
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seymour, In Inflammatory Bowel Disease, there are studies that show that if you do respond to your first anti-TNF and then lose response later, then you're likely to respond to the second anti-TNF. If you do not respond well to your first anti-TNF, you're called a "primary non-responder" and they try a biologic with a different mechanism - like Stelara (IL23 and IL12 inhibitor).

I would guess the same principle applies to SpA.

That said, everyone is different. I didn't respond well my first anti-TNF (Enbrel) but did respond well to my second anti-TNF (Humira with MTX). I eventually figured out I need to be on a med like MTX (such as Arava or Imuran) plus a biologic to keep my AS under control. And that IL-17 inhibitors work better for me than anti-TNFs. All of this took a lot of trial and error - I have literally tried ALL the anti-TNFs approved.

Honestly, right now it sounds like a lot of your symptoms are being exacerbated by anxiety. Anxiety makes everything worse - it makes you really aware of tiny things you normally would not think about. I would focus on working on your anxiety and also see your rheumatologist. She/he can examine you and see if your joints seem inflamed despite having normal inflammatory markers.

Hang in there!!

Re: Question to those who switched biologics [Re: seymour] #280590 06/20/18 04:19 PM
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I guess that all aTNF work differently so losing response to one doesn’t mean I won’t succeed on another. But now I know I’ll always be on borrowed time anyway.

I agree that anxiety makes everything worse but at the level of pain I am having these days I doubt that it could be triggered by anxiety. But you’re right when you say that anxiety is the real burden sometimes.

Re: Question to those who switched biologics [Re: seymour] #280591 06/20/18 07:07 PM
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Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Xarelto; vitamins D3, B12, folate Primary non-responder to Enbrel and Cosentyx
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