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Re: Question to those who switched biologics [Re: seymour] #280456
05/27/18 05:28 PM
05/27/18 05:28 PM
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seymour Offline OP
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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
05/27/18 10:58 PM
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Mary Beth Offline
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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
05/28/18 02:44 AM
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seymour Offline OP
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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
05/28/18 05:27 PM
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SouthernMoss Offline
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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 replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Question to those who switched biologics [Re: seymour] #280471
05/29/18 01:51 PM
05/29/18 01:51 PM
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seymour Offline OP
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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
05/29/18 02:53 PM
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SouthernMoss Offline
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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 replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Question to those who switched biologics [Re: SouthernMoss] #280474
05/29/18 03:48 PM
05/29/18 03:48 PM
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seymour Offline OP
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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
05/29/18 04:34 PM
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SouthernMoss Offline
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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 replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Question to those who switched biologics [Re: SouthernMoss] #280476
05/29/18 04:40 PM
05/29/18 04:40 PM
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seymour Offline OP
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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
05/29/18 04:48 PM
05/29/18 04:48 PM
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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.

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