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#279225 - 10/07/17 05:39 PM DX with Peripheral Spondylitis, what to expect???
crzcrz Offline
Registered Visitor

Registered: 08/08/17
Posts: 8
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...

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#279226 - 10/07/17 06:00 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1319
Loc: Whidbey Island WA
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....


Edited by WhiteCell (10/07/17 06:01 PM)
_________________________
Since 18 years old - began as Reiter's Syndrome. Diagnosed with Ank Spon 2001. Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma-
Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant October, 2009.
Ahmed Shunt June, 2016.
DSEK Cornea Transplant, November, 2016.

Supra Ventricular Tachycardia. 2004.
Cured by RF ablation 2006.
Cardizem 240 CD.

ICU RN Seattle, WA

~Grasp The Challenge and Succeed~

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#279227 - 10/07/17 06:24 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: WhiteCell]
crzcrz Offline
Registered Visitor

Registered: 08/08/17
Posts: 8
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?

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#279228 - 10/07/17 08:19 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1319
Loc: Whidbey Island WA
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?
_________________________
Since 18 years old - began as Reiter's Syndrome. Diagnosed with Ank Spon 2001. Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma-
Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant October, 2009.
Ahmed Shunt June, 2016.
DSEK Cornea Transplant, November, 2016.

Supra Ventricular Tachycardia. 2004.
Cured by RF ablation 2006.
Cardizem 240 CD.

ICU RN Seattle, WA

~Grasp The Challenge and Succeed~

Top
#279229 - 10/07/17 08:38 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: WhiteCell]
crzcrz Offline
Registered Visitor

Registered: 08/08/17
Posts: 8
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 !!

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#279230 - 10/07/17 09:24 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1319
Loc: Whidbey Island WA
I may have missed this are you seeing a Rheumatologist? Your location?
_________________________
Since 18 years old - began as Reiter's Syndrome. Diagnosed with Ank Spon 2001. Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma-
Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant October, 2009.
Ahmed Shunt June, 2016.
DSEK Cornea Transplant, November, 2016.

Supra Ventricular Tachycardia. 2004.
Cured by RF ablation 2006.
Cardizem 240 CD.

ICU RN Seattle, WA

~Grasp The Challenge and Succeed~

Top
#279233 - 10/08/17 10:52 AM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6501
Loc: New York
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.

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#279238 - 10/08/17 04:25 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: WhiteCell]
crzcrz Offline
Registered Visitor

Registered: 08/08/17
Posts: 8
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


Edited by crzcrz (10/08/17 04:25 PM)

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#279239 - 10/08/17 04:27 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: Banana]
crzcrz Offline
Registered Visitor

Registered: 08/08/17
Posts: 8
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

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#279240 - 10/08/17 06:26 PM Re: DX with Peripheral Spondylitis, what to expect??? [Re: crzcrz]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6501
Loc: New York
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.

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