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Enbrel failing or just a flare? Please help. #280347
05/12/18 08:50 PM
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seymour Online OP
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Hi everybody,

So long story short, I've been on Enbrel for about 5 1/2 years with superb success. It gave me my life back, brought my blood markers to normal and brought down my pain from 8/10 to about 2/10 on most days. To the point where I almost "forgot" I had AS.

Last week (Tuesday) I walked about 5 kilometers at a pretty fast pace. It was the first form of exercise I did for years... I felt exhausted when I arrived home and I was feeling stiff and achy for about 3-4 days after that. The following Friday I spent the day up at work and barely sat at all and had a pretty big episode of back pain that night. Then it started to get a bit better, but it never went back exactly to the level of comfort I had before my walk.

This week back pain is at about 5/10, sometimes less. But I feel an annoying discomfort most of the time, and some small symptoms like leg pain or feet pain that had gone away for years are kinda creeping back. Not to a great extent but I feel a difference in my body. I can still do everything normally and my range of motion is not affected, but I feel achy since I exercised.

I'm kind of panicking and thinking Enbrel is starting to fail me and stop working. I've been very depressed to be in some pain again, even if it's nowhere near as bad as before treatment. But I'm stressed and scared.

Anybody experience a flare period in the spring or after exercising a bit too hard? Am I panicking for no reason?

Thanks for your support, I really do need it. I don't want to go back to the way I was before. frown

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280348
05/12/18 11:28 PM
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It's probably just a flare. I take Enbrel and sometimes have mild flares during pollen season in the spring, when I just feel rundown in general, and after over-exerting myself for multiple days in a row. Perhaps you did too much and should have worked up to 5 km after not exercising for a long time. Just take it easy for a while and then resume exercising at a more moderate pace. I wouldn't give up on the Enbrel after only a week. I would supplement with NSAIDs if you're able until the flare ends.

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280349
05/13/18 02:07 PM
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I think the worst part isn't the actual pain, it's the anxiety. The panick attacks about what happens. I'm so scared to lose control of my disease that I'm having bad anxiety which doesn't help... I over-analyze every ache I have.

I don't know if it means anything but I can still get out of bed in the morning without any stiffness or barely at all. Actual pain ranges from 2 to 5, I would call it discomfort most of the time. But I just feel "off". Like I have small pains here and there that I didn't have before. They come and go sometimes within seconds but I'm freaking out.

It's kind of a feeling that something isn't "right". Hard to explain. I never really experienced flares lasting longer than 2 or 3 days before.

What are the odds of me exaggerating this?

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280350
05/13/18 03:00 PM
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You're not exaggerating. You're anxious, which is a real thing with real physical consequences. It will increase your awareness of your symptoms if not the symptoms themselves. A low-dose anxiety med might help you, or, if you don't want to go down that route, yoga, meditation, etc., can help. Getting more sleep and eating well during this time can also help.

My flares typically last weeks, not days. In fact, I've been in a mild flare since late February. It shows no signs of abating, and it followed a full year of what felt like remission. I had a very good 2017. And what you describe as just feeling "off" is exactly what I experience when I'm flaring. I also have a slight increase in stiffness and discomfort in my back that comes and goes. In other words, what's happening to you sounds very familiar to me. Discuss it with your doctor, but don't panic yet. It will likely pass. If it continues for a few months, then it's time to talk about switching meds.

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280351
05/13/18 03:27 PM
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seymour Online OP
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Thank you Winston you've been very helpful. smile

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280352
05/13/18 03:36 PM
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How do you tell the difference between a flare and the med failing?

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280354
05/13/18 05:33 PM
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There are so many things that can encourage a flare. Weather, over doing it, stress etc. After your next dose of Enbrel, do you get better? I failed a couple of them.(and yes it is terribly depressing!!). Sometimes the medication "turned to water". I woke up one day and could barely walk again. and it did not improve with the next dose. The other times, the med would no longer work the whole one week or two (or month) what ever the dosage is. So I would have three good days, 7 bad days and then just 2 good days and 5 gradually worse days.

But try to cheer up!!! Even if it is failing, you have many many options for the new meds. We are so lucky now. I failed all three first meds after a year or two and so had to add a lot of meds and try again until, there were new meds.

So yes, it is a bummer BUT taking action is empowering. I suggest you mark on calendar which days you feel good and which bad and what days you take the medication.

Good luck, and sorry.


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280356
05/13/18 08:20 PM
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Well it's hard to tell if I feel better after my shot. For me the pain relief was mostly continuous before, even if my injection was 1 or 6 days ago.

I would say that for the last 10 days it's mostly intermittent back pain and a slight chest pain. Nothing that affects my range of motion or morning stiffness. I also feel hot all the time but that's probably the constant anxiety. I still have moments where I feel no pain or very little. It's seems random.

It seems that Enbrel is still controlling my peripheral arthritis, morning stiffness and fatigue though.

I don't know what to think.

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280358
05/14/18 02:17 AM
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Wonston, how do you tell the difference between a flare and the med failing?

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280361
05/14/18 11:47 AM
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I think you'd have to wait a reasonable time and see if the flare ends. If the med has failed, the flare wouldn't end. Also sometimes a med stops working because your body has developed antibodies to the med. I think there's a blood test to determine if such antibodies are present, but I've not personally been through that so I'll leave it to others to address that.

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280362
05/14/18 11:48 AM
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Note that you are less likely to develop antibodies to Enbrel than you are to one of the monoclonal antibody drugs, such as Humira.

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280365
05/14/18 04:18 PM
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I think that I’m overly anxious about what my symptoms COULD become and that’s my real struggle. Anxiety keeps me in a state of stress and muscle fatigue that makes me feel bad and I may be attributing some symptoms to AS that eould resolve if I could calm down.

It’s like I’m anticipating pain and panicking instead of reacting to the ACTUAL pain I hsve, ehich is still pretty low.

I have no morning stiffness or pain in hands or any of my previous symptoms I had wprior to taking Enbrel. I just feel like my body is more fragile if thst makes sense. But I’ve been walking more than usual and stressing all day and night so that might vb that....

I’m a nightmare for my gf too. Always stressed and silent and repeating the same worries. She deserves better.

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280374
05/15/18 11:19 PM
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seymour Online OP
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Thanks Winston.

Pain is less now but I gotta get that anxiety underground.

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280376
05/16/18 01:35 PM
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Seymour, I'm so sorry you are struggling right now. You might consider seeing a counselor to help you develop techniques to keep your anxiety under control. You might also consider yoga, which helps you focus your mind as well as your body.


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: Enbrel failing or just a flare? Please help. [Re: seymour] #280380
05/17/18 01:53 AM
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How do you guys cope with the uncertainty associated with this disease?

Also for those who failed on a med, did the effect slowly diminished for weeks or was it more sudden?

Can a biologic’s effectiveness diminish while still working to some degree?

And lastly, can my anxiety make my symptoms worse or make me hyper-aware of little pains that I normally ignore?

Last edited by seymour; 05/17/18 01:58 AM.
Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280392
05/18/18 05:14 PM
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I went to my rheumy yesterday and she tested my range of motion and examined my joints and said all was perfect. She had my blood results from mid-March and said they were perfect too. From our meeting she doesn’t see any reason to think that Enbrel is failing as she thinks active inflammation would limit my range of motion and she would be able to feel it upon palpation.

She gave me a new sheet to test my CRP and ESR but she said it was only to reassure me and that it’s highly unlikely that I’d go from perfect to failing completely in a matter of weeks.

She thinks my anxiety is making me hyper aware of little mechanical AS pains that I used to just brush off.

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280395
05/18/18 06:41 PM
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Originally Posted by seymour
She thinks my anxiety is making me hyper aware of little mechanical AS pains that I used to just brush off.


I agree with her. When my GP first referred me to my rheumy, I had to wait about 6 weeks for the appointment. During that time, she sent paperwork for me to fill out, including the picture of the human figure where you are to shade the areas that have pain. Having to think about all the specific places where I hurt made me so hyper-aware that I was second-guessing every little twinge. I finally had to put the papers away and tell myself not to pull them back out until a day or two before the appointment.

I hope your rheumy was able to ease your mind a little. Hang in there, and try to relax and focus on other things.


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: Enbrel failing or just a flare? Please help. [Re: seymour] #280398
05/18/18 09:08 PM
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It did help a lot but when I have a recent CRP test I will be truly at ease.

Thanks for taking the time to talk to me.

Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280401
05/19/18 04:33 PM
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For 2-3 days now my legs have felt pretty weak and restless.

Could this be a consequence of high anxiety and not eating much or is this related to spondylitis disease activity?

Freaking out about MS too although I don’t have any symptoms like dizziness or tingling

Last edited by seymour; 05/19/18 04:38 PM.
Re: Enbrel failing or just a flare? Please help. [Re: seymour] #280405
05/20/18 03:41 AM
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Yes, this could be from anxiety and not eating much.

Take a deep breath. You're ok. We all have good days and bad days, good weeks and bad weeks. The disease naturally ebbs and flows. So many things can affect how we feel: the weather, not getting enough sleep, getting too much or not enough exercise. Stress is another factor that can affect our disease.

You got a good report from your rheumy. So try to relax and not worry. 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: Enbrel failing or just a flare? Please help. [Re: seymour] #280409
05/20/18 05:33 PM
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Thank you for the kind words.

I’m so scared to return to the state I was in 7 years ago and to progress in pain and fusion. My rheumy says I’ve been getting treatment only 3-4 years from symptom onset so I’m in a best case scenario.

I’m over stretching and over analyzing every ache. I now think my legs are weak from SI inflammation...

Thank you again for bearing with me during this stressful time.

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