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Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz] #279243
10/09/17 01:16 AM
10/09/17 01:16 AM
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Whidbey Island WA
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WhiteCell Offline
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It would be profitable for you to make contact with a therapist who can help you through this initial time. It's just as important as finding the right treatment. It will become easier and more understandable having a professional to monitor your mood. It's important.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
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 RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: DX with Peripheral Spondylitis, what to expect??? [Re: Banana] #279245
10/09/17 03:10 PM
10/09/17 03:10 PM
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crzcrz Offline OP
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crzcrz  Offline OP
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Originally Posted By: Banana
It will get better, I promise. They have so much better and more treatment options. YOU will have a good life you will!!!!

Originally Posted By: WhiteCell
It would be profitable for you to make contact with a therapist who can help you through this initial time. It's just as important as finding the right treatment. It will become easier and more understandable having a professional to monitor your mood. It's important.


Will I have a normal life ever again? Is it a lifetime of medications and pain? frown

Will I be able to do the things I loved to do before? (Dancing, running)... Will I even be able to have a drink lol ...

Last edited by crzcrz; 10/09/17 03:10 PM.
Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz] #279246
10/09/17 05:41 PM
10/09/17 05:41 PM
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New York
Banana Offline
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Yes, yes, yes. Your goal now is to prevent damage---which you can do. It is way to late for me (60's and not treated for years) but not for you. There might even be a cure for you.

Only 1 medication where it is suggested to not drink and that is MTX--though even that restriction has been relaxed to not drinking day before, day of and day after the once a week dose.

Not sure you will want to do long distance running to protect your ankles and hips but I still dance!!!

Anna


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: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz] #279257
10/11/17 10:32 AM
10/11/17 10:32 AM
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Posts: 1,398
Whidbey Island WA
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WhiteCell Offline
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WhiteCell  Offline
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I think it's important to control your anxiety and fears.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
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 RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz] #279258
10/11/17 01:13 PM
10/11/17 01:13 PM
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Winston Online
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There are psychologists who specialize in treating patients suffering from chronic pain. Therapy is tremendously helpful, especially after initial diagnosis when you are dealing with denial and grief (both of which are completely normal reactions to being diagnosed with a chronic condition, btw) in addition to pain. Because the experience of chronic pain is strongly influenced by emotions, you've got to deal constructively with those emotions. So please find a compassionate psychologist or counselor in your community to help you.

Will you live a normal life again? "Normal" is a meaningless term. You will live a different life than you had before, but that doesn't mean you'll be miserable. You'll make adjustments and find things that you can do that make you happy, even if you can't do exactly the same things you were doing before. It will get better. I promise.

Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz] #279259
10/11/17 01:18 PM
10/11/17 01:18 PM
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Winston Online
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Oh, and, yes, you can still have a drink now and then. Just don't overdo it. The official word on drinking is no more than a drink a day for women or two drinks a day for men. My rheumy says that drinking within those guidelines is okay on naproxen. There are no alcohol restrictions with my biologic, Enbrel. It's methotrexate and any drug containing Tylenol that require you to severely limit alcohol, I think.

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