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Question to those who switched biologics #280410
05/20/18 05:38 PM
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seymour Online OP
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Hi everyone.

For those who switched biologics after it stopped working, did you achieve similar or higher success on another one?

Enbrel has worked for me miraculously for 6 years and I’m scared that I’ll never achieve similar success if I have to switch.

Thank you for your time.

Seymour

Re: Question to those who switched biologics [Re: seymour] #280417
05/22/18 01:08 AM
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Enbrel worked great for me for only a few years and then stopped working rather suddenly. Perhaps not coincidentally, I had noticed stronger and stronger injection site reactions in the months before it stopped working, to the point that the injections sites from four or five weeks ago would all puff up when I'd do a new shot.

I switched to Humira and had the same strong success I originally had with Enbrel. My sed rate tracks closely with disease activity and it has been normal for years. I think I have the year I started in my signature line.

Good luck!


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Question to those who switched biologics [Re: seymour] #280420
05/22/18 03:30 PM
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Wow you give me hope, I needed that!

Re: Question to those who switched biologics [Re: seymour] #280421
05/22/18 07:26 PM
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I am brand new to this, having just started Enbrel on April 1st (no improvement to date). However, I have a first cousin who responded very well to Humira initially, but had it stop working after about 9 months. She then switched to Enbrel and at last report had been doing beautifully for over 2 years. Hope that helps!


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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: Question to those who switched biologics [Re: Mary Beth] #280423
05/22/18 10:56 PM
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Originally Posted by Mary Beth
Enbrel worked great for me for only a few years and then stopped working rather suddenly. Perhaps not coincidentally, I had noticed stronger and stronger injection site reactions in the months before it stopped working, to the point that the injections sites from four or five weeks ago would all puff up when I'd do a new shot.

I switched to Humira and had the same strong success I originally had with Enbrel. My sed rate tracks closely with disease activity and it has been normal for years. I think I have the year I started in my signature line.

Good luck!


Question for you: were you fused before taking a biologic and do you think it has slowed your progression?

Re: Question to those who switched biologics [Re: seymour] #280424
05/23/18 12:29 AM
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Originally Posted by seymour
Originally Posted by Mary Beth
Enbrel worked great for me for only a few years and then stopped working rather suddenly. Perhaps not coincidentally, I had noticed stronger and stronger injection site reactions in the months before it stopped working, to the point that the injections sites from four or five weeks ago would all puff up when I'd do a new shot.

I switched to Humira and had the same strong success I originally had with Enbrel. My sed rate tracks closely with disease activity and it has been normal for years. I think I have the year I started in my signature line.

Good luck!


Question for you: were you fused before taking a biologic and do you think it has slowed your progression?


My SI joints were fully fused but I was not fused elsewhere. I did have squaring off of vertebrae though.

My rheumy does not believe in x-rays unless there are significant declines in function since, as he's said, there is no other treatment I could be on anyway, so I've not had x-rays in years. That said, my ROM in my lumbar spine and chest expansion have remained about the same so I don't think I've had significant progression.

My sed rate was somewhere in the 60's (I think, it's been a long time) before I started and is now typically below 20.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Question to those who switched biologics [Re: Mary Beth] #280426
05/23/18 02:12 AM
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Originally Posted by Mary Beth
Originally Posted by seymour
Originally Posted by Mary Beth
Enbrel worked great for me for only a few years and then stopped working rather suddenly. Perhaps not coincidentally, I had noticed stronger and stronger injection site reactions in the months before it stopped working, to the point that the injections sites from four or five weeks ago would all puff up when I'd do a new shot.

I switched to Humira and had the same strong success I originally had with Enbrel. My sed rate tracks closely with disease activity and it has been normal for years. I think I have the year I started in my signature line.

Good luck!


Question for you: were you fused before taking a biologic and do you think it has slowed your progression?


My SI joints were fully fused but I was not fused elsewhere. I did have squaring off of vertebrae though.

My rheumy does not believe in x-rays unless there are significant declines in function since, as he's said, there is no other treatment I could be on anyway, so I've not had x-rays in years. That said, my ROM in my lumbar spine and chest expansion have remained about the same so I don't think I've had significant progression.

My sed rate was somewhere in the 60's (I think, it's been a long time) before I started and is now typically below 20.


Thanks for your reply! I believe you’ve said before that you can’t move your neck at all. Was it that way before biologic treatment?

Re: Question to those who switched biologics [Re: seymour] #280432
05/24/18 02:34 AM
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Originally Posted by seymour


Thanks for your reply! I believe you’ve said before that you can’t move your neck at all. Was it that way before biologic treatment?


Correct, I have very little ROM in my neck but that happened before Enbrel.

When I was diagnosed I also had zero chest wall expansion and zero lumbar expansion and both are now in normal range. Low normal, but normal.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Question to those who switched biologics [Re: seymour] #280433
05/24/18 01:34 PM
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I'm currently on my fourth (4th) biologic because my body is apparently just too clever to fall for all those other attempts...

Each round is it's own unique experience, but I have been fortunate to find better results with each switch. My path has included Enbrel, Humira, Remicade and now Cosentyx. The longest I've ever been able to stay on any one option is about a year, some a little less, some a little more; in the end, my antibodies solve the puzzle and we try again. I'm so thankful that there are many more options still to try, so I always look forward to the change hoping that I'll find my "magic bullet".

Good luck!


Greg (49)
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HLA-B27 neg, MTX, Folic Acid, Belbuca, Cosentyx (failed Enbrel, Remicade, Humira). Diclofenac caused kidney failure, Hard breakup with Norco.
Re: Question to those who switched biologics [Re: seymour] #280453
05/26/18 07:17 PM
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Quick update:

I’m now on medical leave for mild depression and high anxiety. I’ve freaked out way too much about AS, reading websites and stories about progression and projecting myself into a worst case scenario.

As far as pain, I guess most people here would call my bad days good days, but when you’ve been having 1/10 pain for 6 years, a 4/10 or 5/10 pain is panicking. It’s like an old enemy creeping back. Not sure how to deal with the uncertainty anymore.

I’ll have my lab results next Thursday. My CRP was very high when I had uncontrolled inflammation so it’s a pretty accurate indication of my disease activity. Fingers crossed...

Yesterday I played in the park with the kids, climbed all around and ran, and today I’m paying the price in pain. I hate this disease and I hate my stupid body.

Re: Question to those who switched biologics [Re: seymour] #280456
05/27/18 05:28 PM
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Strangely I feel quite better today. What a weird disease...

Re: Question to those who switched biologics [Re: seymour] #280457
05/27/18 10:58 PM
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Originally Posted by seymour
Quick update:

I’m now on medical leave for mild depression and high anxiety. I’ve freaked out way too much about AS, reading websites and stories about progression and projecting myself into a worst case scenario.

As far as pain, I guess most people here would call my bad days good days, but when you’ve been having 1/10 pain for 6 years, a 4/10 or 5/10 pain is panicking. It’s like an old enemy creeping back. Not sure how to deal with the uncertainty anymore.

I’ll have my lab results next Thursday. My CRP was very high when I had uncontrolled inflammation so it’s a pretty accurate indication of my disease activity. Fingers crossed...

Yesterday I played in the park with the kids, climbed all around and ran, and today I’m paying the price in pain. I hate this disease and I hate my stupid body.


I have over-researched things til I put myself in a panic too. I do think it's part of the process of acceptance, so don't be hard on yourself. But in the end I came to terms with it (more or less) by realizing that none of us knows what our futures hold. We just have a disease that causes us to focus on a specific set of possible outcomes, but I have seen enough people's lives turned upside down by sunny-day tragedies and conversely people who were given a death sentence who had a scientifically ground-breaking cure show up just in time to spare them.

Live for today, it's all we know. The older we get the more people share our fate of daily physical pain as chronic and acute problems both add up with the years. I know it's not optimistic, and it's not meant to be. But I figure if all these other people can cope, why can't I? Surely they are not better than me at it.

Some people turn to faith or hopes of cures, but this sort of "Life is like this, yet we all find everyday joys amidst the sorrows" approach is what works best for me.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Question to those who switched biologics [Re: Mary Beth] #280459
05/28/18 02:44 AM
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Originally Posted by Mary Beth
Originally Posted by seymour
Quick update:

I’m now on medical leave for mild depression and high anxiety. I’ve freaked out way too much about AS, reading websites and stories about progression and projecting myself into a worst case scenario.

As far as pain, I guess most people here would call my bad days good days, but when you’ve been having 1/10 pain for 6 years, a 4/10 or 5/10 pain is panicking. It’s like an old enemy creeping back. Not sure how to deal with the uncertainty anymore.

I’ll have my lab results next Thursday. My CRP was very high when I had uncontrolled inflammation so it’s a pretty accurate indication of my disease activity. Fingers crossed...

Yesterday I played in the park with the kids, climbed all around and ran, and today I’m paying the price in pain. I hate this disease and I hate my stupid body.


I have over-researched things til I put myself in a panic too. I do think it's part of the process of acceptance, so don't be hard on yourself. But in the end I came to terms with it (more or less) by realizing that none of us knows what our futures hold. We just have a disease that causes us to focus on a specific set of possible outcomes, but I have seen enough people's lives turned upside down by sunny-day tragedies and conversely people who were given a death sentence who had a scientifically ground-breaking cure show up just in time to spare them.

Live for today, it's all we know. The older we get the more people share our fate of daily physical pain as chronic and acute problems both add up with the years. I know it's not optimistic, and it's not meant to be. But I figure if all these other people can cope, why can't I? Surely they are not better than me at it.

Some people turn to faith or hopes of cures, but this sort of "Life is like this, yet we all find everyday joys amidst the sorrows" approach is what works best for me.


Wise words...

How do you deal with uncertainty?

Re: Question to those who switched biologics [Re: seymour] #280465
05/28/18 05:27 PM
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Originally Posted by seymour
Strangely I feel quite better today. What a weird disease...


I'm glad you had a good day. Hoping that they continue for you.


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] #280471
05/29/18 01:51 PM
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I put myself in a panic again by looking at videos of people with severe disease on YouTube. At this point it’s just self-torture for no reason. I mean by now I know what can happen with severe disease so what do I expect to find?

I’ve come to the conclusion that any research online about AS is counterproductive. It’s a chronic disease so I’ll never find anything positive. I’ll never find anything reassuring. It’s all depressing stuff.

I have to constantly remind myself that most people with AS these days don’t end up with deformity and extensive damage because of the progress made with treatments.

I really have to stop looking up stuff online...

Re: Question to those who switched biologics [Re: seymour] #280473
05/29/18 02:53 PM
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Originally Posted by seymour
I put myself in a panic again by looking at videos of people with severe disease on YouTube.


STOP IT!!!

smile

Looking up information online is like watching the news or reading the newspaper. Good news doesn't sell, so the majority of what's in the media is bad news.

The majority of people with AS are doing well and out there living their lives. They don't have the time or a need to visit a forum like this or post videos on YouTube. That means much of the information online is skewed.

You already know all of this, of course. But you obviously need to be reminded. smile




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: SouthernMoss] #280474
05/29/18 03:48 PM
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Originally Posted by SouthernMoss
Originally Posted by seymour
I put myself in a panic again by looking at videos of people with severe disease on YouTube.


STOP IT!!!

smile

Looking up information online is like watching the news or reading the newspaper. Good news doesn't sell, so the majority of what's in the media is bad news.

The majority of people with AS are doing well and out there living their lives. They don't have the time or a need to visit a forum like this or post videos on YouTube. That means much of the information online is skewed.

You already know all of this, of course. But you obviously need to be reminded. smile




You have no idea how good your posts make me feel. I’m so thankful that you take time to reassure me even when I’m being a stubborn basket case. I wholeheartedly thank you.

Of course it’s something I know and something I told other ASers when they were in the dark place I’m in now. It’s just so, so hard to be rational when you’re anxious.

I guess I’m trying to find something online that will tell me « Hey, you’ve had symptoms for maybe 10 years, you still have perfect spine mobility, perfect hips and Enbrel kept you almost pain free for six years. You’re not a severe case. Treatment will progress. You will be fine and won’t end up deformed and fused all over. »

But nothing can guarantee this. I can only hope. My neck ROM has decreased by half during the 4 years of untreated inflammation. I don’t want to lose the rest. I don’t want to fuse. I’m scared. I know I should be thankful that a decade of symptoms have not taken away any of my mobility. The doctor even said my lumbar spine was more flexible than most healthy people.

That’s why I research online. To find someone similar to me who’s now older (I’m 32) and still ok. But I never find that. Only stories of crippling pain, hunched backs and fusion....

Sorry for the long post.

Re: Question to those who switched biologics [Re: seymour] #280475
05/29/18 04:34 PM
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I'm 57. I've had symptoms since my 20's, but was not diagnosed until age 52. I started Humira at age 53. I have no fusion. I have some damage in my lumbar spine, but not enough to significantly affect ROM. My spinal pain most days is a 1 unless I walk a lot (I limp on my left knee, which puts stress on my back) or stand a lot. It rarely goes higher than a 4-5. My knees were hit pretty hard so I've had a partial knee replacement in my right knee (in 2014) and will have a partial in my left knee in August.

There are tons of AS'ers like me out there.


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: SouthernMoss] #280476
05/29/18 04:40 PM
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Originally Posted by SouthernMoss
I'm 57. I've had symptoms since my 20's, but was not diagnosed until age 52. I started Humira at age 53. I have no fusion. I have some damage in my lumbar spine, but not enough to significantly affect ROM. My spinal pain most days is a 1 unless I walk a lot (I limp on my left knee, which puts stress on my back) or stand a lot. It rarely goes higher than a 4-5. My knees were hit pretty hard so I've had a partial knee replacement in my right knee (in 2014) and will have a partial in my left knee in August.

There are tons of AS'ers like me out there.


It’s great to read this. Not just for myself but for you.

If I may ask, were your symptoms intense during your 20’s? Mine were pretty bad as far as inflammation goes.

Re: Question to those who switched biologics [Re: seymour] #280477
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I also want to jump in here since my disease diagnosed ca. 1999 has come and gone, but mostly been absent. Bad flares are awful and my last one had me using kitchen chairs like crutches and wondering if I needed a handicapped tag on my car. My dark time. I went from Humira to Cosentyx to Simponi and back to Humira, while tryig to get relief from gabapentin and flexoral. Finally somehow forced a remission and now I'm doing intense workouts 3 - 4 hours a week at the gym, cardio, yoga and all my regular activities with only some stiffness here and there. I'm 55, using only occasional topical NSAIDs and compounds and the quell device. The dark times might come again.

Re: Question to those who switched biologics [Re: seymour] #280479
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I had a magic thought that somehow Enbrel would work at full capacity for decades and that maybe my disease would never progress again.

In hindsight it was just denial and I have a lot of work to do to accept the fact that AS is degenerative, chronic and unpredictable.

Switching and adding meds is not something I can avoid and I have to learn not to panic when one medication stops working.

If my blood test isn’t OK I hope I’ll find helpful treatment soon.

Re: Question to those who switched biologics [Re: seymour] #280481
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Originally Posted by seymour
Originally Posted by Mary Beth
Originally Posted by seymour
Quick update:

I’m now on medical leave for mild depression and high anxiety. I’ve freaked out way too much about AS, reading websites and stories about progression and projecting myself into a worst case scenario.

As far as pain, I guess most people here would call my bad days good days, but when you’ve been having 1/10 pain for 6 years, a 4/10 or 5/10 pain is panicking. It’s like an old enemy creeping back. Not sure how to deal with the uncertainty anymore.

I’ll have my lab results next Thursday. My CRP was very high when I had uncontrolled inflammation so it’s a pretty accurate indication of my disease activity. Fingers crossed...

Yesterday I played in the park with the kids, climbed all around and ran, and today I’m paying the price in pain. I hate this disease and I hate my stupid body.


I have over-researched things til I put myself in a panic too. I do think it's part of the process of acceptance, so don't be hard on yourself. But in the end I came to terms with it (more or less) by realizing that none of us knows what our futures hold. We just have a disease that causes us to focus on a specific set of possible outcomes, but I have seen enough people's lives turned upside down by sunny-day tragedies and conversely people who were given a death sentence who had a scientifically ground-breaking cure show up just in time to spare them.

Live for today, it's all we know. The older we get the more people share our fate of daily physical pain as chronic and acute problems both add up with the years. I know it's not optimistic, and it's not meant to be. But I figure if all these other people can cope, why can't I? Surely they are not better than me at it.

Some people turn to faith or hopes of cures, but this sort of "Life is like this, yet we all find everyday joys amidst the sorrows" approach is what works best for me.


Wise words...

How do you deal with uncertainty?


Uncertainty? The end result is I deal with the uncertainty by realizing my future was ALWAYS uncertain, and so is yours and so is everybody else's. You can be hit by a bus tomorrow, proverbial or literal.

More of the story is that before AS I dealt periodically with severe bouts of depression and I know from experience that my own mind can do worse to me than my body can. I am very aware of avoiding the darkness if I can at all help it.

The longer version is this: Treat a chronic disease diagnosis like grieving, because in a way it is. You are grieving the life you thought you would have. And that is normal, that is healthy, don't let anyone tell you otherwise. (I ran this by a mental health therapist who agreed, years ago, and confirmed I was on the right path). Like grieving, you go through steps. And like grief, the path is not the same for everyone. You mostly have an arc of denial and bargaining, anger and hurt and acceptance and healing. But as with grief you will wake up one day after months of years of feeling fine and it will hit you again like you just found out yesterday. The pain and the fear and the hurt feelings and anger and frustration, the feeling sorry for yourself.

THIS IS NORMAL! Don't beat yourself up. Say 'Well, this is how I feel today. I might not feel this way tomorrow" and do some physical self-care and some mental self-care, whatever that means for you. And then try to limit the time you allow yourself to dwell and force yourself if you have to do to something meaningful to you, and then tomorrow may be a better day. Or a worse day. But it won't be the same day.

It's an ongoing process. There is no one answer and there is no one path. As long as you are moving on a path it's good. But if you find yourself stuck in a spot on the path and it all looks impossible, reach out and ask for time with a therapist who deals with chronic illness because you owe it to yourself to get the emotional help if you need it.

You may not. I don't think you do right now; you seem to be honest and looking for answers and not stuck. But know that it is there if you need it. There are always options.

Last edited by Mary Beth; 05/30/18 12:08 AM.

46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Question to those who switched biologics [Re: seymour] #280485
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Originally Posted by seymour
If I may ask, were your symptoms intense during your 20’s? Mine were pretty bad as far as inflammation goes.


I don't know how much inflammation I had in my 20's since I was never tested. My symptoms for the most part were not what I would call intense during my 20's.. I did have a few flares that were pretty intense, with sciatica-type pain radiating down my butt and the back of my leg. I would pace the floor when I had a flare because it hurt too much to sit. When I wasn't in a flare my symptoms were a sore back and stiffness in the morning. And my back would freak out if I did too much. Mopping the kitchen was killer.


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] #280487
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I’ve had a terrible day yesterday when I actually felt desperate enough to check out which knife was better to cut my wrists.

It’s not normal with my current level of pain of about 6/10 to have those thoughts. Especially 6 years after being diagnosed. For some reason I view myself as a sick person, almost a cripple, when in fact I’m 100% functional. It’s like the worst case of AS is a certainty for me. It’s like I convinced myself that no other medication would work as good and as long as Enbrel, despite reading testimonies of people who switched meds and achieved success.

I can’t contemplate the future without seeing myself as a super bad AS case. Hunched, fused... When in fact after 10 years I only have mild restrictions on one side of my neck. I have no reason to believe that no other drug will work. Enbrel was a miracle for YEARS. My response to this first anti-TNF was optimal.

It’s a battle against anxiety, a battle against depression. I have to find some faith in treatments. Some faith in the future.

I asked for an appointment with my rheumy as soon as possible and will ask for a switch to Humira. I won’t wait until I’m in crippling pain to take action.

Re: Question to those who switched biologics [Re: seymour] #280489
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Sorry for posting so much.

Re: Question to those who switched biologics [Re: seymour] #280492
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Seymour, I'm sorry you are having a hard time. I think it's important not to look too far ahead. As Mary Beth said, all of life is uncertain, not just our disease. It's best just to live in the now as much as possible.

I also think it would be very helpful for you to see a counselor or therapist to learn techniques to control your anxiety and panic. Depression is an organic condition. It's not a sign of weakness. You talk about your battle with anxiety and depression and finding faith in treatments. A counselor or therapist can help you do that and could recommend medication if he/she thinks it would be helpful for you.

Hang in there.


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] #280493
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Thank you for responding. smile

I got my blood results this morning. All my tests came out perfect. ESR perfect, CRP at zero. For reference when I had severe inflammation my CRP was 22 so in my case it’s a valid tool to assess disease activity.

So she says mobility good, blood perfect, so Enbrel is still doing its job of keeping inflammation under control. She think I have « normal » AS pain but that my anxiety makes me focus on it and associate any pain with severe disease. She says it could be a flare too, but that psychologically I’m reacting to 4/10 pain like it’s 10/10 and making it worse by bringing my body down with constant stress.

All in all I’m clinically good, but my anxiety is making me over-aware of AS discomfort.

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Sounds like a good report. Hopefully it will help ease some of your anxiety.

She's right about attributing every little ache and pain to our AS. We all do it at times. But sometimes the pain in your toe is because you stumped it walking to the bathroom in the dark last night, y'know? wink


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] #280495
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I know that CRP isn’t always elevated in AS but mine was high with active disease and normal when I felt great.

I just hope that it’s an accurate evaluation tool. Maybe it’s normal cause it’s only been a month of flare and will skyrocket soon...

It’s like nothing will truly bring me peace of mind

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If CRP was high at baseline then I guess it’s a useful tool to assess levels of inflammation later on? My rheumy seems to think that in my case disease activity and CRP levels correlate strongly.

Re: Question to those who switched biologics [Re: seymour] #280498
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Originally Posted by seymour
If CRP was high at baseline then I guess it’s a useful tool to assess levels of inflammation later on? My rheumy seems to think that in my case disease activity and CRP levels correlate strongly.


Yes, it's a useful tool for you. Your rheumy has documented your CRP levels over the years and has determined that there is a correlation. It sounds like she has a good handle on your condition. Trust her when she say's you're doing ok. smile


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] #280505
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And yet I have a nagging pain in my upper back, my legs are weak, my neck is tight and my joints crack way more. And my chest feels tight.

It’s depressing to know something is not right and be told that all tests are fine. I’m used to having terrible test results when I’m in pain.

I’m wondering if I’m going crazy.

Last edited by seymour; 06/01/18 05:20 PM.
Re: Question to those who switched biologics [Re: seymour] #280510
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If I feel stiffer or crack more does it mean I’m fusing??

Last edited by seymour; 06/02/18 03:37 PM.
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Originally Posted by seymour
If I feel stiffer or crack more does it mean I’m fusing??


Can someone reassure me? My neck is stiffer than usual since my flare started and it makes more sounds. Am I fusing or is there no direct correlation?

Re: Question to those who switched biologics [Re: seymour] #280525
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I'll re-assure you . . . It's not necessarily a sign of fusion or even necessarily related to your AS. I have degenerative arthritis in my neck from sitting in the same position in front of a computer for the last 20-25 years. My neck makes all sorts of noises and gets stiff sometimes. I have no fusion there.

Re: Question to those who switched biologics [Re: seymour] #280526
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Thank you. I've had two blood tests in the last two weeks and none showed any signs of inflammation, and yet my back hurts, my chest hurts and my neck feels stiff.

I'm at a loss as to how I can have pain but nothing in my blood. Usually my CRP shoots up when I hurt.

My doctor takes it as confirmation that Enbrel is still controlling inflammation but I feel like sh*t.

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Seymour, as you told someone just a couple of days ago, pain and fusion do not have a direct correlation. Some people are surprised to find they have fusion because they've never had pain, and some people never fuse despite severe pain.

Pain can come from other reasons besides inflammation. Stress can cause pain. Stress can cause your muscles to tighten up, which will cause pain. It's also possible that stress can cause pain by affecting brain chemicals. And as we've said before, stress can cause you to be more aware of pain that was always there but not noticed as much.

You're about the age of my children, so forgive me for going mama bear on you, but you really, really need to get a handle on your anxiety. You are going to literally make yourself sick if you don't get it under control, and I don't think you can do it by yourself at this point. Ask your rheumatologist or your primary to give you a referral. Depression is an organic condition, not a character weakness. There are medications that can help. Whether medication would help in your case is something only a qualified medical professional can tell you. They can also teach you how to deal with with the stress and anxiety so that it doesn't make you sick.


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] #280528
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Hi Ginny,

I've been referred to a therapist and I'm starting in two days. I'm also taking anti-depressants and sleeping pills for my anxiety.

I usually have it under control. It's been years since I've panicked like that. I just don't think stress can cause such a high level of back pain.

Is there an AS-related reason that could cause pain without inflammation? This is getting stupid. I'll press my rheumy for something to crush that flare...

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I'm so glad you will be seeing a therapist. smile Please ask him/her about the correlation between stress and pain and get his/her thoughts on whether stress can cause the level of pain you are experiencing.


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] #280531
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If you want to get a jumpstart on your therapy, here is a great free on-line program to help people with anxiety about health problems. I think you would get a lot of out this. Its likely the exercises in this program will be similar to what your therapist will recommend, as its based on cognitive-behavioral therapy principles.

http://www.cci.health.wa.gov.au/resources/infopax.cfm?Info_ID=53

Re: Question to those who switched biologics [Re: seymour] #280532
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Thanks everybody

Re: Question to those who switched biologics [Re: Cake] #280533
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Originally Posted by Cake
If you want to get a jumpstart on your therapy, here is a great free on-line program to help people with anxiety about health problems. I think you would get a lot of out this. Its likely the exercises in this program will be similar to what your therapist will recommend, as its based on cognitive-behavioral therapy principles.

http://www.cci.health.wa.gov.au/resources/infopax.cfm?Info_ID=53


This is pretty well done and helpful, but it's funny how they mention "I have arthritis" as an example of over-worrying...

It seems a bit more suited for those who aren't diagnosed with chronic conditions, but it's helpful anyway. Thanks fo sharing.

Re: Question to those who switched biologics [Re: seymour] #280536
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I would like to thank everyone who took time to support me while I wallowed in self-pity and anxiety. I know we all have this disease here so it's probably frustrating to watch someone panic and repeat the same things over and over again.

This painful episode which I am slowly conquering was essential to my grieving process and my acceptance of AS. I feel like I had it "too easy" so far, being put on a biologic early on that erased 90% of my pain for 6 years. I never took the time to absorb the fact that pain in some form or other will be my companion forever, and that effective treatment does not mean being pain-free.

I need to learn to live with pain as a "white noise" in my life. Do the most of good days and allow myself to have terrible days, even terrible weeks sometimes as disease activity and treatment efficacy fluctuate.

I guess I should consider myself lucky to have such a great response to anti-TNF and look forward to another treatment that will work as well as Enbrel did for years.

I will try to stay positive and apply what you all told me.

Thanks to all, sincerely.

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Gratitude.

"Tears falling into Mountain snow.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
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Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

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Re: Question to those who switched biologics [Re: seymour] #280538
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We all have to wallow now and then. The important thing is to get back up afterwards and move forward. Hang in there.


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] #280544
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My first biologic was Remicade. After 6 infusions, rheumy and I called it a failed experiment. After the loading doses, which might have had a tiny amount of success, he was gradually increasing each dose by one vial each time till the last dose was 8mg/kg. At that dose, which did not do anything positive, the side-effects kept me of work the next day as I felt like I had flu. Then it was on to Enbrel, which worked for a day or two after the injection (weekly). Then I asked if doing the twice/weekly dosing would help and he agreed to try it. That was my introduction to pre-filled syringes. Now I will only use pre-filled syringes when available (long-winded reason omitted). It was successful despite the lower dose per shot. Weekly dosage is the same. It was stopped when we thought it wasn't working any longer, roughly 9 months after starting it. In hindsight, this was probably a huge flare rather than the drug not working any longer.

Then came Simponi, which never quite lasted for a month. Gave it up after 8-9 months. Then came Humira, which decreased my WBC so far that rheumy stopped it. It made me sad because that drug was probably the most successful biologic I've ever used.

Then came Cimzia. Stayed on it for 2.5 yrs. It worked early on but I had a flare in early winter (roughly the same time as when I was on Enbrel). Since at the time there were no others to try, I stayed with it and after 3-4 months, that flare eased and it was back to working well again. I only stopped when I had a case of pneumonia. When my PCP had me get a chest x-ray to make sure I was cleared up after the antibiotics were finished, the x-ray showed a nodule. It took quite a while to get that worked up and about the time I was going to be cleared to get back to the Cimzia, I fell and broke 8 bones in my foot. Took a long time to heal and I opted to go to Cosentyx for the next med (hubby was irrationally worried about me being on a biologic at the time, but he's eased up on that worry now that he's on a biologic also for PsA!).

Cosentyx worked but caused me a lot of gut issues and I gave it up after 4 months and went back to Cimzia. I've taken 2 of the loading doses.

In answer to your questions--thankfully I had better success after the first one. And better results after the first successful one. If for some reason Cimzia does not work as well as it did the first time, I think I'll try Enbrel again before moving to something new. Personally, I think it's a crap shoot as to whether one of them will work or not. This is for PsA and I've been on MTX through all of these biologics.

Like is said above, sometimes we need to wallow. Sometimes we just have to trust that it will all work out. Sometimes we don't know what we should do and just take something on the hope that it will work for us and that if it doesn't, there are other choices. Hope you find the med that works for you and have the strength to get up the next day to try again.


Psoriatic Arthritis, Osteoporosis HLAB27+
MTX, gabapentin, strontium citrate
Started Cosentyx in Oct 2017
Already tried Remicade, Enbrel, Simponi, Humira, Cimzia
Re: Question to those who switched biologics [Re: seymour] #280546
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Hi rumble,

I did not know a flare could last many months. I thought most flares were over in a matter of days or at least in a few weeks. It makes me reconsider my desire to switch from Enbrel to another TNFi. Since my blood tests are impeccable and my range of motion doesn't seem impacted, maybe I'm just having a flare and would prematurely stop a drug that works...!

I called my rheumy two times for an emergency appointment in the last two weeks. Her secretary offered an appointment on July 9. I asked her if she had anything sooner cause I was in pain. She called me back and now my rheumy wants me to do back x-rays...

I think my calling twice and asking for an appointment sooner set off her alarm. I don't think my 4/10 pain warrants x-rays... Truth be told I'm actually scared of having x-rays cause I don't want to know how my disease has progressed. Since I've had no decline in function and ROM and am on a biologic anyway, I frankly don't see what x-rays would bring aside from statistics and setting off my anxiety again.

My rheumy probably thinks I'm having intense pain and wants to see if I have something mechanical that could explain it since my blood tests and ROM are good... This is anxiety for you. I feel ashamed now.

Re: Question to those who switched biologics [Re: seymour] #280549
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Hi Seymour. Sorry I didn't respond sooner but I was on vacation. If your CRP generally tracks with your disease activity, it's a good tool. For me, Sed Rate tracks with inflammation so my rheumy stopped measuring CRP and started measuring Sedrate instead. Everyone is different.

I am glad you are talking to someone about your anxiety. It is normal to have anxiety or depression related to diagnosis with a chronic illness. Yes depression and anxiety can cause pain, but as someone pointed out so can lots of things. People without diseases get bad backs too, ya know? smile

The recent suicides of several high-profile people show just how serious an illness depression and anxiety can be. Hang in there, don't need to apologize for asking for support on a support forum. We are here for you. We have all likely had periods of panic and doubt over this. Keep sharing and please let us know how you are doing. We all care.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Question to those who switched biologics [Re: seymour] #280550
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Let's just say that having a certain level of back pain is becoming my new normal. I'm getting used to it although obviously I'd rather be well. My anxiety and depression have lowered. Past three days I've felt near-normal. Today is a bit tougher but not too bad.

I have a rheumy appointment June 26 so I'll adress my concerns with her. If my blood tests are normal again and my range of motion is still OK then frankly I don't think I can convince her to modify my treatment so I'll just deal with this new pain.

My main concern is fusion but I can't predict this based on pain or anything so if it happens then whatever. I just can't afford to spend my life being scared of my disease progressing. It's a waste of emotional energy.

I'm still hoping it's just a big flare and that things will settle down.

Take care.

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Does anybody have back pain that feels like muscle knots? I have mid back pain near my sides, kind of below the shoulder blades and It feels like knots or back spasms or some kind. It doesn’t feel like it’s inflammatory or comes from the actual spine.

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Quote
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 - 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] #280563
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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.

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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.


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MTX, gabapentin, strontium citrate
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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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: Question to those who switched biologics [Re: kglenn] #280592
06/20/18 08:41 PM
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Originally Posted by kglenn


It is a reassuring study indeed, thank you.

Although with only 4 aTNF left to try, if I'm successful for 2-3 years each it won't take me that far. I'll only be about 42 years old!

This is the scariest thing for me: to have nothing that really works.

Re: Question to those who switched biologics [Re: seymour] #280593
06/20/18 09:20 PM
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Stop worrying about things that haven't happened. You don't even know yet that the Enbrel has stopped working. I was in a flare from mid-February until last week. And then -- poof! -- I'm back to normal. I'm really glad I didn't waste 4 months worrying about switching to Humira.

Re: Question to those who switched biologics [Re: seymour] #280594
06/20/18 09:45 PM
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Well how much time should I spend in pain and stiffness before I know that Enbrel isn't working?

I'm trying, really. I would love to be a non-anxious person.

Re: Question to those who switched biologics [Re: seymour] #280595
06/20/18 10:37 PM
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You have 4 anti-TNFs plus Cosentyx. If, in the worst case, like you said, each lasts only 2 years that gives 8 years on anti-TNFs. Plus another two on Cosentyx. Plus another two if you try both Simponi and Simponi Aria (IV version).

I have done ALL of this. Like you, I worried a lot about running out of options. When you start biologics at 15, your options diminish fairly quickly, especially since at the time, only Enbrel, Humira and Remicade were given to kids.

I can tell you honestly that my anxiety made everything worse. It made me hyperaware of every site of pain. It made me think I was flaring when I wasn't. It can cause muscle spasms. It can make minor pain into major pain. It caused many sleepless night. It has taken years of working with a therapist and now I'm better at bracketing that anxiety. The thing is, it's out of your control. You have no idea how long these drugs will last. But I can tell you this for sure - there are several more biologics in the works. I see Dr. Reveille in Texas, who is a big AS researcher. He always tells me what is the next option coming down the pipeline.

You have 10 years or so before you even have to worry about what is coming down the pipeline. And it could be much longer. There are people who last between 5-10 years on a single biologic.

Right now, you aren't even sure you're in a flare. Honestly, from reading your other threads, all of your symptoms sound muscular (shoulder blade pain for example is often from a muscle spasm in that area). Your inflammatory markers are perfect. If you are really worried, I would encourage you to see your rheumatologist and have her examine your joints and ask for an MRI of your spine.

And most definitely keep seeing a psychologist.

Anxious people can work on becoming less anxious. For me it has taken a lot of time and I'm not always good at it, but it's pointless to worry about stuff you can't control. And anyway, I can guarantee that in 10 years, there will be other options.

I have ZERO FDA approved options left now. Do I worry? YES!!! Do I let it take over my life? NO! I'm going to enjoy this biologic while it works, instead of focusing on the fact that it might fail one day and then I'll have nothing left. I have tried Enbrel, Humira, Remicade, Simponi, Remicade (higher dose), Simponi Aria, Humira (again), Cimzia and Cosentyx, all with different combinations of DMARDs. I'm 24 so I have a long time to go.

Re: Question to those who switched biologics [Re: seymour] #280596
06/20/18 10:40 PM
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Another option might be to take a short course of steroids and see if that helps the pain. Sometimes a steroid taper will calm things down for me and then I don't have to switch biologics.

Another option might be dose escalation. In psoriasis, Enbrel is given at higher doses - 50 mg twice a week for 3 months. You could try that. I have done that with every single biologic I have been on - escalated the dose or frequency before moving on to something else.

You could also add an NSAID if you aren't already on one.

Re: Question to those who switched biologics [Re: seymour] #280597
06/21/18 04:34 AM
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Thank you everybody. Sorry for being annoying and irrational.

Re: Question to those who switched biologics [Re: seymour] #280598
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I apologize if my last comment to you was a bit harsh, but a comment my rheumatologist made to me when I was still in the diagnostic phase of my disease, when we still weren't 100% sure what was going on with me and my anxiety was at its peak, has really stuck with me. He actually raised his voice at me in frustration and said, "Stop trying to give yourself things you don't have!" It helped, and it still helps when I'm feeling a little anxious about things.

Re: Question to those who switched biologics [Re: seymour] #280599
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It’s OK Winston, I annoy myself too. I’m not crazy you know. I do see that I’m completely overthinking this and blowing everything out of proportion.

See my question is this: how long should I wait? How long should I tolerate daily pain and increasing stiffness until I know it’s time to switch?

I don’t want to switch prematurely. But in only a month I’ve already started losing some ROM in my neck again. I don’t want to wait until I have a CRP of 60 and fusion before switching to a more effective treatment.

I really don’t know how I should approach this. Anxiety is one thing but there is very real AS symptoms returning too. I’m not a crazy person. Not yet anyway 🙂

Re: Question to those who switched biologics [Re: seymour] #280602
06/21/18 06:39 PM
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CBMom's daughter, you have a lot of wisdom. You should set up your own account so we can tell when it's you posting. smile

Seymour, the question of how long to wait is not really something we can answer. We can share our own experiences, as others in this thread have done, but the final decision has to be one you and your rheumy make based on your own circumstances. I don't think your rheumy is going to let you get to a CRP of 60 and fusion before she changes your treatment plan. smile So try not to stress over that for now. As the old saying goes, don't borrow trouble.

In the meantime, try taking an NSAID for a while if you aren't already and can tolerate it. Or take arthritis-strength Tylenol. Not just here or there, but on a regimen so that you have a steady amount in your bloodstream. Try some of the OTC stuff like Salon Pas patches (with or without lidocaine), Aspercreme (with or without lidocaine), BioFreeze, etc. Or try a prescription topical NSAID like Voltaren gel. Ask your rheumy or your primary for a PT referral for your neck. Ask whether a TENS unit might help. Someone made a post recently about the Quell units, you might check into those too.


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] #280604
06/21/18 08:07 PM
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My GP prescribed co codamol 30/500mg, two pills every 6 hours when needed.

I'm not too big on codeine so I only took it twice. It masks the pain but it makes me feel a bit groggy.

I took a lot of Aleve and Ibuprofen but it makes my stomach hurt after a few days so I'm taking a break. My GP also prescribed a PPI.

I take 2 arthritis-strength Tylenol every 8 hours most days. It helps a bit but not much.

Re: Question to those who switched biologics [Re: seymour] #280608
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
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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
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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
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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
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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
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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
Joined: Jun 2012
Posts: 481
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seymour Online OP
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seymour  Online OP
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Joined: Jun 2012
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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.

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