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Re: Question to those who switched biologics [Re: seymour] #280479
05/29/18 09:32 PM
05/29/18 09:32 PM
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seymour Online OP
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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
05/30/18 12:07 AM
05/30/18 12:07 AM
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Mary Beth Offline
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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
05/30/18 01:44 PM
05/30/18 01:44 PM
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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
05/30/18 09:28 PM
05/30/18 09:28 PM
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seymour Online OP
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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
05/31/18 02:46 AM
05/31/18 02:46 AM
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seymour Online OP
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Sorry for posting so much.

Re: Question to those who switched biologics [Re: seymour] #280492
05/31/18 02:25 PM
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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
05/31/18 04:10 PM
05/31/18 04:10 PM
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seymour Online OP
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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.

Re: Question to those who switched biologics [Re: seymour] #280494
05/31/18 05:06 PM
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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
05/31/18 05:26 PM
05/31/18 05:26 PM
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seymour Online OP
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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

Re: Question to those who switched biologics [Re: seymour] #280496
05/31/18 07:08 PM
05/31/18 07:08 PM
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seymour Online OP
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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.

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