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Enbrel failing or just a flare? Please help. #280347
05/12/18 08:50 PM
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
05/12/18 11:28 PM
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Winston Offline
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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
05/13/18 02:07 PM
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seymour Online OP
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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
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
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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seymour Online OP
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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
05/13/18 08:20 PM
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seymour Online OP
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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
05/14/18 02:17 AM
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seymour Online OP
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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
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.

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