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#279225 - 10/07/17 09:39 PM DX with Peripheral Spondylitis, what to expect???  
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crzcrz Offline
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I have a previous thread in which I listed my history of symptoms beginning this April. My rheumatologist says I have spondylitis.

I would just like to know what I can expect. Is this disease able to be stopped in its tracks? I don't want my life to be destroyed...

#279226 - 10/07/17 10:00 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]  
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WhiteCell Online
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This is a good place to start. There is a lot to learn so write down questions for your doctor and those here. There is a wide variability in symptoms and effects on your life.

http://www.spondylitis.org/Types-of-Spondylitis

Your life will not be destroyed. I have had AS since I was 18 years old and have led a rewarding and wonderful life. I am 65 now, and while I have had challenges it is those challenges that have made me stronger and more able to respond and help others.

Go easy....

Last edited by WhiteCell; 10/07/17 10:01 PM.

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.
DSEK Cornea Transplant 2009.
Ahmed Shunt 2016.
DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
#279227 - 10/07/17 10:24 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: WhiteCell]  
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crzcrz Offline
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Originally Posted By: WhiteCell
This is a good place to start. There is a lot to learn so write down questions for your doctor and those here. There is a wide variability in symptoms and effects on your life.

http://www.spondylitis.org/Types-of-Spondylitis

Your life will not be destroyed. I have had AS since I was 18 years old and have led a rewarding and wonderful life. I am 65 now, and while I have had challenges it is those challenges that have made me stronger and more able to respond and help others.

Go easy....
Do the symptoms only get worse from here? Or will treatment now help to prevent that?

#279228 - 10/08/17 12:19 AM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]  
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WhiteCell Online
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Symptoms vary between people and the type of effect it has on your body. Treatments can help greatly. If I can ask some questions.

Have you talked with your Rheumatologist about this?

What are your symptoms now?


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.
DSEK Cornea Transplant 2009.
Ahmed Shunt 2016.
DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
#279229 - 10/08/17 12:38 AM Re: DX with Peripheral Spondylitis, what to expect??? [Re: WhiteCell]  
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crzcrz Offline
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Originally Posted By: WhiteCell
Symptoms vary between people and the type of effect it has on your body. Treatments can help greatly. If I can ask some questions.

Have you talked with your Rheumatologist about this?

What are your symptoms now?
I'm on 2 pills of 500MG Naproxen every day for this month.

My elbow points hurt 6 months ago but 3 months ago it turned to the insides of my elbows where they are now a bit swollen (Used to be a lot worse). Elbows have gotten sooo much better since summer though, it was unbearable back then.

Now I have unexplained pain in the tendon below my knee and above my shin (patellar tendon) but nothing showed up on MRI.

Now my feet hurt, primarily my left one because I was limping on my left leg to compensate for the tendon pain because I thought it would help it heal. Couldnt walk on my foot for a good week so I hopped on my right foot and now it kind of hurts. Now I can walk because my doctor did an MRI and said despite the findings, I should still be able to walk, so I just fought through it. feet have gotten much better since 2-3 weeks ago. I do have moments where my feet hurt a lot but at least I can walk now!

A more well-explained history of my symptoms is in my other thread "Could I Have AS [19 year old male]".

Thanks for your concern !!

#279230 - 10/08/17 01:24 AM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]  
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WhiteCell Online
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I may have missed this are you seeing a Rheumatologist? Your location?


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.
DSEK Cornea Transplant 2009.
Ahmed Shunt 2016.
DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
#279233 - 10/08/17 02:52 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]  
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Welcome and sorry, it can take a while to get the proper treatment. They want to try something and wait.

If you are taking the naproxin as instructed, it should start helping in about a week. Research shows that early aggressive treatment will prevent damage so I urge you to get good insurance.

Try not to over do it to prevent damage until good treatment.

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.
#279238 - 10/08/17 08:25 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: WhiteCell]  
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crzcrz Offline
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Originally Posted By: WhiteCell
I may have missed this are you seeing a Rheumatologist? Your location?


Yes, I saw a rheumatologist last Friday. This is in Manhattan, New York.

I initially saw a rheumatologist in the summer in southern California when I had only elbow pain and he didn't think it had anything to do with HLAB27/AS

Last edited by crzcrz; 10/08/17 08:25 PM.
#279239 - 10/08/17 08:27 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: Banana]  
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Originally Posted By: Banana
Welcome and sorry, it can take a while to get the proper treatment. They want to try something and wait.

If you are taking the naproxin as instructed, it should start helping in about a week. Research shows that early aggressive treatment will prevent damage so I urge you to get good insurance.

Try not to over do it to prevent damage until good treatment.

Anna
I believe I had good insurance! Yeah the first line of defense my rheum says is the Naproxen, if it doesnt work in a month's time she will try something else.

I just have a lot of anxiety and depression right now... I was a happy college student and now my life has been completely turned upside down

#279240 - 10/08/17 10:26 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]  
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It will get better, I promise. They have so much better and more treatment options. YOU will have a good life you will!!!!


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.
#279243 - 10/09/17 01:16 AM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]  
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WhiteCell Online
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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.
DSEK Cornea Transplant 2009.
Ahmed Shunt 2016.
DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
#279245 - 10/09/17 03:10 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: Banana]  
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crzcrz Offline
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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.
#279246 - 10/09/17 05:41 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]  
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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.
#279257 - 10/11/17 10:32 AM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]  
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WhiteCell Online
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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.
DSEK Cornea Transplant 2009.
Ahmed Shunt 2016.
DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
#279258 - 10/11/17 01:13 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]  
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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.

#279259 - 10/11/17 01:18 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]  
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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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