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Question to those who switched biologics #280410
05/20/18 05:38 PM
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
05/22/18 01:08 AM
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Mary Beth Offline
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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
05/22/18 03:30 PM
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seymour Online OP
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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
05/22/18 07:26 PM
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kglenn Online
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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
05/22/18 10:56 PM
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seymour Online OP
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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
05/23/18 12:29 AM
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Mary Beth Offline
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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
05/23/18 02:12 AM
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seymour Online OP
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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
05/24/18 02:34 AM
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Mary Beth Offline
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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
05/24/18 01:34 PM
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Thomopro Offline
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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)
AS
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
05/26/18 07:17 PM
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seymour Online OP
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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.

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