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#278111 - 06/06/17 09:28 PM Re: Some help? [Re: awesomeman]  
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awesomeman, Google "modified New York criteria." That's the criteria most rheumatologists apply to make a diagnosis. If you have the requisite physical damage, apparent on xray, and you have one clinical symptom, I think that's all they need.

#278114 - 06/06/17 11:24 PM Re: Some help? [Re: awesomeman]  
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Sorry, awesomeman:

Welcome to the club; AS and nothing else fits.

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

#278115 - 06/07/17 12:25 PM Re: Some help? [Re: awesomeman]  
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Thank you for the kind comments. Anyone want to join me in some anger/denial on the current situation lol


diagnosed at 32.
HLA B27 Positive
Currently on Humira, Tramadol, and celebrex
#278116 - 06/07/17 01:26 PM Re: Some help? [Re: awesomeman]  
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Awesomeman, I think we all went through the anger/denial stage. Although for many of us, it was also a relief to put a name to the monster and have a plan of attack as opposed to groping in the dark to figure out what is wrong.

When is your rheumatologist visit? What treatments have your current doctors offered to get you by until you see the rheumatologist?


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
#278119 - 06/07/17 06:30 PM Re: Some help? [Re: SouthernMoss]  
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Originally Posted By: SouthernMoss
Awesomeman, I think we all went through the anger/denial stage. Although for many of us, it was also a relief to put a name to the monster and have a plan of attack as opposed to groping in the dark to figure out what is wrong.

When is your rheumatologist visit? What treatments have your current doctors offered to get you by until you see the rheumatologist?



Well remember right now it was a diagnosis from the spine doc. Im seeing a rheumy on friday. I mean whats tough to swallow is this. Im still pretty active and fight to do as much as I can around the pain. I was always positive because I'd say, this is temporary. Tough to know its gonna stick around for a while. Ive really just managed the pain with tramadol. I have to say it works really well for me. Even though its not as strong as the other narcotics, i can take it daily and it takes the edge off without messing me up. I know its not a perfect solution, but I've been taking it for a while and well...it works.


diagnosed at 32.
HLA B27 Positive
Currently on Humira, Tramadol, and celebrex
#278120 - 06/07/17 08:39 PM Re: Some help? [Re: awesomeman]  
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SouthernMoss Offline
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Yeah, it's tough that it's permanent. But with proper treatment, it can get much better than what you're dealing with now.

Before I was diagnosed, pain would wake me up in the wee hours of the morning and I would have to get out of bed and walk. When I would get ready for work I was so sore and stiff that I couldn't bend down to pull on my clothes or brush my teeth. I spent many an evening after work in my recliner with a heating pad on my lower lumbar and SI joints. I would take long naps on the weekends because the fatigue was so bad.

Now with proper treatment, I rarely wake up in pain. I still have some stiffness in the morning, but it's much less severe and goes away much more quickly once I get up and moving. I can't tell you the last time I used my heating pad. And I rarely nap any more.

It's good that you are active. Staying active is important with AS, so keep it up.

That's great that you are seeing a rheumy so soon. I had to wait 3 months to see mine the first time. Let us know what s/he says.

I hope it's not AS, but if it is, know that it's not the end of the world. Just look at guys like Dan Reynolds, the lead singer of Imagine Dragons, and Mitch Crews, a world class surfer from Australia. They have not let AS slow them down.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
#278161 - 06/10/17 12:00 AM Re: Some help? [Re: awesomeman]  
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Just got back from the rheum. She agreed 100% with the other docs that it's definitely AS. As bad as the news was. I did feel comfortable with her but I'm really just plain scared of taking the humira type drugs.


diagnosed at 32.
HLA B27 Positive
Currently on Humira, Tramadol, and celebrex
#278167 - 06/10/17 05:40 AM Re: Some help? [Re: awesomeman]  
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Being scared is normal. There are some pretty scary side effects with biologic medications like Humira. Fortunately, the bad side effects are rare. And if you look at the warnings for Aleve and Tylenol, they have some very scary side effects too.

Biologics can help prevent damage. Any other meds are just treating symptoms. My personal philosophy is that I choose to accept the very small risk of bad side effects from biologics over the increased risk of additional damage without them.

What treatments did your rheumy recommend? Did she prescribe an NSAID?


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
#278170 - 06/10/17 11:13 AM Re: Some help? [Re: awesomeman]  
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Yes. She prescribed a few different medications. But she mentioned the long term endgame is the meds like humira.


diagnosed at 32.
HLA B27 Positive
Currently on Humira, Tramadol, and celebrex
#278178 - 06/12/17 12:55 PM Re: Some help? [Re: awesomeman]  
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I can understand you being scared, but think about not being able to do anything? Needing a wheelchair or cane? And that can happen quickly. At one point, I could barely walk, so I was more scared of watching life go by.

Humira was my first miracle, that was in 2004. Before I started that medication, I was often stuck in my 4th floor walk up apartment, barely able to get to the bathroom. It felt like every joint in my body was frozen stiff. I barely remember how bad my hips use to be. My only sadness is how badly damaged my ankles are, and if only I had those meds before that I could be almost normal.

Humira, Enbrel and Remicade have been on the market for 15/18 years and have helped many many people. A miracle!!!!!

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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