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Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282961
04/27/19 07:36 PM
04/27/19 07:36 PM
Joined: Nov 2007
Posts: 460
St George, UT
Britefutr Offline
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Britefutr  Offline
Registered Visitor

Joined: Nov 2007
Posts: 460
St George, UT
OK, I know this post is a little dated but I'll put this out there if anyone is still following.

I've have had AS since childhood, more than 35 yrs. I've been thru a lot of the typical struggles that you'll read of. It took 7 yrs for a diagnosis, and even then other doctors would make me doubt it because many physicians still thought than women don't get AS. (pause while I laugh) Throughout all these decade I've also had the journey of trying to find the right medication regimens. They one stops working and it all starts again, so I understand your frustration.

For me, I got to a point at about age 25 where I have never had a "pain free" day since and I know that is not a reasonable expectation for me. Also never a day where my function was "normal". But it was manageable and I actually got used to the day-to-day pain and my mind just didn't focus on it as much. After a while I could no longer remember when a certain area didn't hurt, that was my new normal. I would enter a severe flare up, but I new it would always get better eventually. Once I'd had my first flare up in a new joint or enthesis, that area would never be completely without symptoms ever again. But each time I eventually got used this new pain and moved on.

Fast forward...it always got better eventually, until it didn't. About 6 yrs ago I entered a new period when the disease got more aggressive and started advancing. I developed many of the rare complications. The current antiTNF stopped working and I started a new one. It worked and I felt better but still had severe flare ups and uveitis while on the drug. My mind said "what the hell?! this isn't supposed to happen" My doctor and I began diligently working on my treatment plan, meeting every 6 weeks or so, in physical therapy, multiple surgeries to clean up damage, regular routine of targeted injections, radio frequency ablation and other pain treatments, going on opiod pain killers. But this disease was rapidly picking away at my life. I couldn't do my crafts because I could not sit forward in a chair. I worked in a recliner for a year until I finally had to leave a job I loved dearly and go on disability. I stopped meeting friends for lunch and dinner because I felt so horrible and I hate people to see me like that. My colon issues became uncontrollable at times. I couldn't leave my house for weeks at a time except for DR appts, which I sometimes needed help to get to. My first year on disability I had 152 Dr. Appts!!! Thank god I had amazing insurance and a case manager at the insurance company that backed me completely.

I developed a new disease that caused my skeletal muscles to deteriorate, I became so weak that some days it was hard to do anything. Feed myself even sometimes, trouble swallowing. That started a whole new process of looking for a diagnosis which felt a lot like the days prior to my AS diagnosis. I was misdiagnosed with Myasthenia Gravis and treated for that for 3yrs while my muscles continued to deteriorate. My adrenal function is now damaged from decades of steroids. The endocrinologist rheumatologist and pain mgt doctors conferenced called to talk about my case. My endo told me that the consensus was that losing my adrenal function was the least of my worries and it was decided to continue with steroid therapy to stop the destruction from AS and just let the adrenal gland go (what?!!!) Just deal with it as a new disease that also will require life-long management.

I developed severe memory issues that are very alarming, and each dr had a different theory as to the reason, until an MRI found white matter changes in 2015. I was given 4 possibilities on what this indicated, all various forms of early onset dementia with various underlying causes. This was done verbally, my neuro will not put this in my med records until the disease is glaringly obvious because there are consequences to even having that mentioned in your records.

I was hanging my hopes on every new drug/therapy/surgery, hoping that this would be the one that made a huge difference; that eventually this would all improve, I would resume activities and get back to work. And each time I was crushed and dejected when I didn't get the result I hoped for.

Finally my doctor had my husband and I sit with him for a frank talk. He said "Sebeth, you need to accept that this is your life now. I don't think you will ever work again. and I doubt you'll ever get your old life back to any significant degree. Will a treatment break through come along that works for you? Who knows. I'm not telling you to go home lay down and fall into hopelessness, but you have to try to come to terms with the reality of your situation." I cried many tears but it was something that I needed to hear. I struggled hard for a year and finally realized I was grieving. Grieving for the loss of my old life. I went to grief counseling and it helped tremendously.




Last edited by Britefutr; 04/27/19 07:50 PM.

Sebeth
---------------
AS onset at age 13, finally diagnosed in 1989, age 22!
Currently awaiting Cosentyx.
IBS, Polycythemia Vera, Anticardiolipid Syndrome,
Myositis, Adrenal Insuffiency, Asthma, etc...
Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282969
04/29/19 01:58 AM
04/29/19 01:58 AM
Joined: May 2010
Posts: 1,514
Whidbey Island WA
W
WhiteCell Offline
Registered Visitor
WhiteCell  Offline
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W

Joined: May 2010
Posts: 1,514
Whidbey Island WA
Your rendering of your story caused me a very deep breath. I am sooo deeply affected by your stories and others. And you know you are not alone. My dad was dx with Parkinsons at 38 years old and he lived until he was 50. He refused to stop walking and did so up until his early passing. He would run stumbling into fences until he got his balance and we, our dog he and I would take a walk typically 3 blocks sometimes more. He read though he could not bend and he needed my help at night to turn. He was as stiff as a board. If he prayed I did not see it. But after I lost him it took a decade to realize how grand his courage had made me. Unflinching, uncompromising and though in pain he fell down stairs to keep walking....daily. At the time, as a teenager I could not understand how much his courage would mean to me, now and always he will be my champion and my hero.

I grieve with you about your losses but I can guarantee your example of courage and hope will leave a long bright sun on everyone who comes into contact with you.

Best Wishes For THE miracle cure....with you.

Cell

Last edited by WhiteCell; 04/29/19 01:59 AM.

Starting at 18 yrs old; 1971 Reiter's Syndrome. Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by Radio Frequency Ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Is there a point of no return for AS/enthesitis? [Re: Britefutr] #282990
05/01/19 03:26 AM
05/01/19 03:26 AM
Joined: Jan 2019
Posts: 11
C
Caturday Offline
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Caturday  Offline
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C

Joined: Jan 2019
Posts: 11
Originally Posted by Britefutr
OK, I know this post is a little dated but I'll put this out there if anyone is still following.

I've have had AS since childhood, more than 35 yrs. I've been thru a lot of the typical struggles that you'll read of. It took 7 yrs for a diagnosis, and even then other doctors would make me doubt it because many physicians still thought than women don't get AS. (pause while I laugh) Throughout all these decade I've also had the journey of trying to find the right medication regimens. They one stops working and it all starts again, so I understand your frustration.

For me, I got to a point at about age 25 where I have never had a "pain free" day since and I know that is not a reasonable expectation for me. Also never a day where my function was "normal". But it was manageable and I actually got used to the day-to-day pain and my mind just didn't focus on it as much. After a while I could no longer remember when a certain area didn't hurt, that was my new normal. I would enter a severe flare up, but I new it would always get better eventually. Once I'd had my first flare up in a new joint or enthesis, that area would never be completely without symptoms ever again. But each time I eventually got used this new pain and moved on.

Fast forward...it always got better eventually, until it didn't. About 6 yrs ago I entered a new period when the disease got more aggressive and started advancing. I developed many of the rare complications. The current antiTNF stopped working and I started a new one. It worked and I felt better but still had severe flare ups and uveitis while on the drug. My mind said "what the hell?! this isn't supposed to happen" My doctor and I began diligently working on my treatment plan, meeting every 6 weeks or so, in physical therapy, multiple surgeries to clean up damage, regular routine of targeted injections, radio frequency ablation and other pain treatments, going on opiod pain killers. But this disease was rapidly picking away at my life. I couldn't do my crafts because I could not sit forward in a chair. I worked in a recliner for a year until I finally had to leave a job I loved dearly and go on disability. I stopped meeting friends for lunch and dinner because I felt so horrible and I hate people to see me like that. My colon issues became uncontrollable at times. I couldn't leave my house for weeks at a time except for DR appts, which I sometimes needed help to get to. My first year on disability I had 152 Dr. Appts!!! Thank god I had amazing insurance and a case manager at the insurance company that backed me completely.

I developed a new disease that caused my skeletal muscles to deteriorate, I became so weak that some days it was hard to do anything. Feed myself even sometimes, trouble swallowing. That started a whole new process of looking for a diagnosis which felt a lot like the days prior to my AS diagnosis. I was misdiagnosed with Myasthenia Gravis and treated for that for 3yrs while my muscles continued to deteriorate. My adrenal function is now damaged from decades of steroids. The endocrinologist rheumatologist and pain mgt doctors conferenced called to talk about my case. My endo told me that the consensus was that losing my adrenal function was the least of my worries and it was decided to continue with steroid therapy to stop the destruction from AS and just let the adrenal gland go (what?!!!) Just deal with it as a new disease that also will require life-long management.

I developed severe memory issues that are very alarming, and each dr had a different theory as to the reason, until an MRI found white matter changes in 2015. I was given 4 possibilities on what this indicated, all various forms of early onset dementia with various underlying causes. This was done verbally, my neuro will not put this in my med records until the disease is glaringly obvious because there are consequences to even having that mentioned in your records.

I was hanging my hopes on every new drug/therapy/surgery, hoping that this would be the one that made a huge difference; that eventually this would all improve, I would resume activities and get back to work. And each time I was crushed and dejected when I didn't get the result I hoped for.

Finally my doctor had my husband and I sit with him for a frank talk. He said "Sebeth, you need to accept that this is your life now. I don't think you will ever work again. and I doubt you'll ever get your old life back to any significant degree. Will a treatment break through come along that works for you? Who knows. I'm not telling you to go home lay down and fall into hopelessness, but you have to try to come to terms with the reality of your situation." I cried many tears but it was something that I needed to hear. I struggled hard for a year and finally realized I was grieving. Grieving for the loss of my old life. I went to grief counseling and it helped tremendously.





posts like these makes me cry... I hate seeing people's lives being changed drastically to the point where you can't work or support yourself. I hope these kinds of cases become less and less than the norm. I hope you're doing well britefutr.

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