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what are the criterias for AS?

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Posted 2/23/2007 4:47 PM (GMT 0)
im HBLA27 neg.

i have stiff neck, back pain and ribs pain.

blood tests neg. no ESR nor CPR

please reply i dont know what could be? when i have bowel problems my hips hurt

did coloscopy and endoscopy no crohns

knees and hips and fingers and ankles affected.

 

Posted 2/23/2007 7:33 PM (GMT 0)
Here is a link to the Spondylitis Associations webpage regarding the diagnosis of AS (sorry I can't make it a workable link). http://www.spondylitis.org/about/as_diag.aspx



Something to remember -- you can be B27 negative and still have AS. My sed rates (and related tests) generally always fall within the normal range - even in the midst of a horrific flare. Blood tests for me personally, are not an accurate indicator of my inflammation or disease. My diagnosis comes from xrays (you can't miss the fusing). Even my Crohn's had to be diagnosed after various imaging tests as my blood tests were of no help.

The best diagnostic tool for AS seems to be some sort of imaging (MRI, xray) so you can actually see the fusing or involvement.

Hope this helps.

***I didn't change anything, just made your link "clickable"***

Post Edited By Moderator (Ducky) : 2/23/2007 2:02:44 PM (GMT-7)

Posted 2/25/2007 5:56 AM (GMT 0)
It is more difficult to fit into the criteria for As than to fall into the Spondyloarthropathy group. I am HLA-B27 negative too, but I have all the diagnostic criteria except for fusion. This created quite a bit of trouble for my last Rheumy. He insisted that I had to have AS to be treated with one of the Biologics and since I had no SI joint fusion, he refused to Dx or treat me. Every visit there was yet another thing he wanted to check and for over a year, he just played with me. I had previously been treated with Enbrel - for 14 months! but he just wouldn't relent and script anything.

SAA has some wonderful info about the group of Spondys. I hope you get some answers and relief soon.
Posted 2/25/2007 6:05 AM (GMT 0)

Dear Keah ~

Hello!  I was wondering what your dr finally did for you, and how you finally convinced him to script you for the biologics?  My rheumy appt isn't until July so I have some time to build up my file and case for this..I'm really thinking I have it.  My SEDs have been elevated once, RF neg, and only other pos. test were a few ANAs.  Anyway, I'm interested in learning all I can prior to that visit...you guys are extremely helpful!  Thank you!!

Beth

 

PS Good luck to you star!

Posted 2/26/2007 2:04 AM (GMT 0)
Beth, at my last appt with the old Rheumy, he told me that I needed to get my GI to treat the Crohn's so that he could treat my joint pain with NSAIDS. Of course I know that NSAIDS are never the first line treatment for someone with IBD, especially since I have previously tried and failed almost all of them, so I never went back. Instead, I got a referral to a Rheumy from my GI and this new Rheumy was fantastic. I left my first appt knowing that he was working on getting HUmira approved through my insurance.

I have the syringes in my fridge and am hoping that I can take my loading dose this week. Hopefully, this will get both my Crohn's and SpA under control and let me get my life back.

I hope that you can find some answers and relief. Let me know if there is anything I can do to help you.

Post Edited (Keah) : 2/25/2007 8:33:50 PM (GMT-7)

Posted 2/26/2007 3:33 AM (GMT 0)
Istone, I just posted a bunch of info on the other AS thread. feel free to ask if I've missed something.

https://www.healingwell.com/community/?f=10&m=722984&g=739141#m739141

Posted 2/26/2007 4:59 PM (GMT 0)

hi

 

im terrified my arthritis is spreaded in all my body.i have stiff neck and back my ankles and knees and hips hurt also shoulders and ribs .

could be AS without elevated ESR and CPR? is difficult to sit cos i have ribs pain

could be an infection in the body that triggered AS? my situation became more and more worse. what to do? im so scared about AS meds r so dangerous and here they dont cover biologics. sulfa i thinnk is terrible.. what to do? pls help me !

 

Keah said...
Istone, I just posted a bunch of info on the other AS thread. feel free to ask if I've missed something.

https://www.healingwell.com/community/?f=10&m=722984&g=739141#m739141

Posted 2/26/2007 6:12 PM (GMT 0)
I recently convinced my doctor that i had as. previously diagnosed with ulcerative colitis. i need some support because i'm not sure about the treatment for as. my doctor has suggested Imuran but I am afraid of the side effects (like pancreatitis) Anyone taking this drug with good results?  Help!!! confused
Posted 2/26/2007 10:51 PM (GMT 0)
I have been taking Imuran and getting Remicade infusions for my AS for 2 1/4 years. No problems with either med. I needed a walker or two canes to get around prior to going on the above combo. I was headed for almost fulltime wheelchair usage. I even was scheduled for hip replacement surgery for what I was told was severe pain and lack of mobility due to osteoarthritis. After the 3rd infusion of Remicade, I was able to walk without assistance, no longer limped from the right hip problems, and had greatly improved range of motion in all my joints. My back and SI pain was also greatly reduced. I canceled the hip replacement because the problem was inflammation from the AS, not OA problems.
Posted 2/26/2007 11:25 PM (GMT 0)
Badbutt,
(LOVE the name by the way)
Along with the RA, I have AS which mainly effects my back (bad spasms). Imuran was GREAT! The likelihood of developing adverse effects & damage from drugs is possible, true...but Tylenol has a laundry list of complications & OTC NSAIDs have a garden of terrible "this & that may happen". Imuran has been around FOREVER...it's tried and true.
I started Imuran last year...was on it for a year. Nothing bad ever happened from it. Of course, when you have a AI disease, much of thetreatments will leave you with immunosuppression.
I used Imuran along with Humira and then Remicade...and also along with prednisone & valium for AS (as well as RA).

I understand...one look at all of the print outs of RISKS and side effects would scare anyone. But that's where YOU come in as a responsible patient...keeping weekly or monthly bloodworks & all Dr. appts, and communicating with your docs about your feelings.

I would go for it! Think about it, talk it over again with your physician. Don't feel rushed to make a decision...you will do what is right when ready.

Best wishes. Erin
Posted 2/26/2007 11:33 PM (GMT 0)
Thanks so much for the info.  I think I'll give the Imuran a try.

Posted 2/26/2007 11:34 PM (GMT 0)

badbutt,

I hear you. When I was first Dx with SpA I was told to start Remicade, but I was extremely reluctant. I left the Rheumy without commiting to anything but within 3 months, the pain had progressed to the point that I knew I had to do something. I finally agreed to try Enbrel, which was the mildest of the Biologics. After 14 months on it, I only suffered with one sinus infection, most likely brought about by my own failure to use my sinus sprays.

Because of a change of insurance, I had to see another Rheumy, who outright refused to consider that I had SpA and wouldn't treat me with anything other than NSAIDS, which I know I can't handle thanks to the CD.

Finally, I found another Rheumy who has scripted Humira. Since the CD is also out of control, I'm willing to risk whatever may come to try and get my life back. I want to feel good and possibly even go back to work, but unless I am willing to try the meds, I won't get anywhere.

I'd recommend that you do some reading on our UC forum and the Crohn's forum where you will find many more members who are on Imuran. I know that Crohn's has had many threads regarding this and you'll find all sorts of info from people who have been using this for a long time.

I hope you find your answers and relief soon.

Posted 2/28/2007 10:53 PM (GMT 0)
hey badbutt.. how are you doing?
Posted 3/1/2007 2:44 AM (GMT 0)
ducky,
I have been having a lot of pain in my right foot on the instep mostly. I am still having a bit of a flareup of colitis but still can go to work. I take Pentasa for that. I haven't started the Imuran yet as my GI suggested but I do have the prescription in the cupboard. I took some Mobic for the pain in my foot but it still hurts like its broken. Overall I try to keep a sense of humor and keep going on with my life. Since I don't live in the States or Canada I am so glad to have found this site.
Posted 3/1/2007 3:32 PM (GMT 0)

istone said...
im HBLA27 neg.

i have stiff neck, back pain and ribs pain.

blood tests neg. no ESR nor CPR

please reply i dont know what could be? when i have bowel problems my hips hurt

did coloscopy and endoscopy no crohns

knees and hips and fingers and ankles affected.

I got seronegative spondyloarthropaty so i've read much for these type of diseases and i know plenty.

AS is a 'final diagnosis' part of the seronegative spondyloarthropaties group of arthritis.

There are 4 other  'final' diagnoses which are part of the spondyloarthropaties gropup. They are enteropathic arthritis, reactive arthritis, psoriatic arthritis and undeferentiated spondyloarthropathy and they all along with AS share 4 MAIN SIMILARITIES: primary joint surroung tissue involvment(ligaments, tendons), mild (if any) sinovitis, sacroiliac joints involvment and negative RF, ANA. Initial diagnosis of enteropathic arthritis, ReA or PsA may later develop in AS. If the doctor strictly follows the conventions then diagnosis of AS should not be established until there is no typical for AS physical sinal changes seen on x-rays like fusions, spinal erosions or growths. If the findigs are not enough to establish one of the other major diagnoses in the group - reactive, enteropatic or psoriatic arthritis but there is no physical AS changes yet then docs often use the 'undeferentiated spondyloarthropathy' diagnosis, but they do not realy know what's wrong with you and how yr disease will develop in future.

RA and Lupus arthritis are not a part of the seronegative spondyloarthropaties group, they have different clinical symptoms and blood work results. But it is not impossible a person to have both: RA or Lupus with one of the spondyloarthropaties. mad  

There is a scientific evidence that AS is actually a 'reactive' arthritis caused by a abnormal body reaction to bowel bacteria which usually lives in our guts but however in the person affected by the AS this bacteria causes 'smth like a constant alergy' to it , and it's constant presense in the guts sets a pattern for a typical chronic ilness in the otherwise symbiotic host.

Let me remind that my spondyloarthropathy started after long lasting untrated prostate infection with the mentioned bacteria.

I'm also HLA B27 negative, so this is not a signifficant criteria. I am HLA DR4 positive which is known as one of the RA contrubutors tissue genes, but godness i don't have RA, that's pretty sure. At least 4 now. Also nobody known of my relatives has/had it. So this thing about the tissue genes is realy not cleared enough that's why tissue genes are not a main criteria for diagnosis, and are commonly not performed at all.

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