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#1 ErinF


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Posted 04 June 2007 - 04:39 PM

Hi everyone! I went back up to Madison today for the follow up with the rheumatologist, and got the diagnosis of ankylosing spondylitis. I'm starting the drug indomethacin, 3 times per day. He said that AS is what is causing my aches and pains, fatigue, etc. (probably even the sleep problems) and that the indomethacin should kick in about a week or so after starting it. If that doesn't help, we'll petition the insurance company for coverage for something like Enbrel or Remicaid, which he said costs about $20,000 a year (or more) and so most insurances really balk at paying it. I'm relieved to finally get a real, solid diagnosis so that I know what I'm dealing with. He said that I have two things that are good--I'm a woman and 36 years old. The younger you are when you're diagnosed (like childhood or teens) usually means a worse prognosis and men tend to get the worst cases. The only thing I have to be on the lookout for apparently is leaky heart valves, whatever that means. I have to get checked out by a cardiologist once a year for the rest of my life, but that doesn't seem so bad to me.

Thanks everyone for such terrific support over these last two months. You are all an amazing group of people!!!!

Hoping everyone is well,

#2 Bunky


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Posted 04 June 2007 - 05:25 PM

Hi Erin,
I'm really glad to hear you finally got a diagnosis. I hope the new meds will help you feel better very soon!

Take care!

#3 WestCoast1


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Posted 04 June 2007 - 05:44 PM

Hello ErinF~
Thank you for the update!

I am sure that you are relieved to have some definite answers. I hope that you and the doctor find the right meds now to help with the symptoms of ankylosing spondylitis.

I was wondering what was involved in the diagnosis of ankylosing spondylitis?


#4 Shelley Ensz

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Posted 05 June 2007 - 04:27 AM

Hi Erin,

I'm glad you finally got a diagnosis, although I'm sorry you have Ankylosing Spondylitis. Just a few months ago we carried an article that touched on it. With any luck, they will be figuring out how to diagnose people with it sooner.

Scientists to unlock genes behind common serious illnesses. The biggest DNA analysis of whole human genomes will shed light on why some people are more at risk of developing a serious illness. They are examining 15,000 markers for genetic variations relating to another four diseases - breast cancer, autoimmune thyroid disease, multiple sclerosis, and ankylosing spondylitis. Guardian Unlimited. 04/14/07.

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 ErinF


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Posted 05 June 2007 - 07:34 AM

AS can be diagnosed with X-rays and a blood test, although the rheumatologist told me that it's mostly a diagnosis based on clinical symptoms--low back and hip pain (like deep inside the buttock) that tends to be one sided (although it can alternate), gets worse with inactivity, person feels the need to stoop to control the pain, eye inflammation (feeling of sand being thrown in the eyes), and fatigue. The inflammation can spread to the joints of the knees and fingers as well. Sounds like your typical autoimmune disease, doesn't it? :P

AS tends to run in families, and I'm surprised that I wasn't considered for this years ago because it is in my family. We're just one giant cornucopia of autoimmune and inflammatory diseases on my dad's side of the family. I'm beginning to think we should stop reproducing! :lol:


#6 Sweet


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Posted 05 June 2007 - 02:56 PM

Hey Erin,

I'm really glad you finally received some sort of answer! BUT, I'm sorry you have anything at all. I need to do some research on your diagnosis as I'm not up to date on the issue.

Thanks for letting us know. :)
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#7 jefa


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Posted 05 June 2007 - 10:49 PM

AS was one of the things in the list of possibles when I was being handed pamphlets about rheumatoid arthritis (which was the original possible diagnosis for me). I think scleroderma was near the end of the list. I used to stop reading before I got that far. As I recall, AS affected men more than women. I also take indomethacin (now called indometacin in UK) as an anti-inflammatory. My dose is 75mg slow release twice a day. It works better than some of the other NSAIDs, but not as well as Celebrex did.
Warm wishes,

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

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#8 janey


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Posted 06 June 2007 - 03:06 AM

I too am glad that you finally got a diagnosis! It's quite frustrating not to know what's going on and when the doctors can't figure it out, then you can really become nervous. I'm sure you've already done some research on Ankylosing Spondylitis but I'll go ahead an provide you the link to Mayo Clinic's page on Ankylosing Spondylitis. I was not familiar with AS so it was interesting to learn a little about it. I hope the medication works for you. It not, it does look like you have some options. I know several people that take Remicade (nfliximab) for RA and it's does wonders for them. But yes, it is expensive.

Please let us know how you are doing and if the indomethacin work for you.

Big Hugs,
Janey Willis
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