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12-05-2012, 03:00 PM   #1
Dukeis
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Ankylosing spondylitis?

I have a question about being diagnosed with Ankylosing spondylitis. Does being diagnosed take a long time? I have had 2 different Rheumatologist
tell me this could take a long time to conclude it is Ankylosing spondylitis. The Rheumatologist I see now has told me that the treatment for Crohn's would be about the same as the AS. As in the anti-tnf meds. While I was on Remicade I never had much problem with my back, but now I'm on Humira it doesn't seem to help my back.

Has anyone had problems with their back and then been diagnosed with AS years after it first started to be a problem?

It seems they want to see structural damage to the spine before saying it is AS to me.

Also does anyone here have both Crohn's and AS that has both responded to one anti-tnf and then changed to another and then only have one disease respond to the other. My Rheumatologist told me this is possible, but I would like to know if this has happened to anyone else?

Prenisone does wonders for my back, but I sure don't want to be on it! My Rheumatologist has suggested when I travel I could do a dose pack of prednisone to help my back. Has anyone done this?

Thanks for any suggestions!
12-05-2012, 11:34 PM   #2
araceli
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This is what I have learned since my son started to have back problems. Ankylosing spondylitis is very hard to diagnose. It may take up 7 to 8 years. My son was diagnose with AS, by MRI. All blood test came negative. So he was Undiagnose. There is no test for AS. It has to be a combination of blood test, symptoms, MRi's and history.
Only test that I know it may tell you. is Vectra D test. You have to be over 18 in order to have it done. My son is 14. So no help there. Remicade is for Rheumatoid problems and for Crohn's. A lot of people with Crohn's develop AS, and some start with AS and then develop Crohn's. He does not have Crohn's but his sister does. Best wishes for you.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
12-06-2012, 04:23 AM   #3
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I was "diagnosed" w/AS way back. I was screened for the HLA-B marker & it was there. That, combined w/the symptoms I was experiencing gave the doctor the diagnosis. I don't recall that it took very long. One of those "if it walks like a duck.." scenarios.
The problems started in my hips, though, the right one to be specific. The pain then migrated to my lower back, & into my upper back (between the shoulder blades), my neck, & even at times my sternum. That sucks.
And I have not been diagnosed w/Crohn's, but Ulcerative Colitis many years later. I'm a virtual inflammatory-fest. Inflammapalooza.
12-06-2012, 10:28 PM   #4
Dukeis
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I was "diagnosed" w/AS way back. I was screened for the HLA-B marker & it was there. That, combined w/the symptoms I was experiencing gave the doctor the diagnosis. I don't recall that it took very long. One of those "if it walks like a duck.." scenarios.
The problems started in my hips, though, the right one to be specific. The pain then migrated to my lower back, & into my upper back (between the shoulder blades), my neck, & even at times my sternum. That sucks.
And I have not been diagnosed w/Crohn's, but Ulcerative Colitis many years later. I'm a virtual inflammatory-fest. Inflammapalooza.

Interesting my pain originally started with my right hip and has now moved to my sacrum & coccyx. Now I'm having pain in the lumbar area. I'm also having a strange popping in my neck that is painful. All this makes me think this maybe AS. I tested negative for the HLA-B marker, but my Rheumatologist told me that is not 100% accurate.
12-07-2012, 04:59 AM   #5
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Well, here's how I saw it when it came to me:
You may or may not have it. If you DO, then there's really nothing that can be done about it. If you consider the things that medical professionals will tell you to do if you do have it (weight loss, no smoking, excercize, stretches) those are good things to do anyway, right? It's up to you if you want to go gluten-free or whatever dietary stuff you find that works for you.
I was prescribed Indomethacin & said no thanks. I've never taken it regularly for my AS. I just try to stay healthy & limber. And practice good posture, lol
12-10-2012, 12:16 PM   #6
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Since prednisone worked on both. I would think the pain you are having is inflammation.

About one in six people with ibd also has spinal inflammation, although this inflammation is independent of the severity of the bowel disease symptoms. In many, this may just be arthritis in the sacroiliac (SI) joints, but in about five percent of people, the entire spine is involved, as it is in AS.

It can take a long time to get correct Dx of Ankylosing Spondylitis. Certain diagnosis is often from damage (fusing) on an xray (sacroiliac joint). it could take 7 years for the damage to show up on an xray. With that said, a Dx can be made sooner by other symptoms.

Both IBD and AS can be treated with TNF-a blockers. they are not all the same. Remicade and Humira are indicated for both AS & IBD.

Sorry to hear of your pain on top of the Crohn's. I have AS & Ulcerative Colitis.

I would recommend being proactive with the AS. If you have it, you will be dealing with it for a very long time. It can be disfiguring. you should be aware of the other types of inflammation that can occur. Best wishes.
12-12-2012, 12:49 PM   #7
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Since prednisone worked on both. I would think the pain you are having is inflammation.

About one in six people with ibd also has spinal inflammation, although this inflammation is independent of the severity of the bowel disease symptoms. In many, this may just be arthritis in the sacroiliac (SI) joints, but in about five percent of people, the entire spine is involved, as it is in AS.

It can take a long time to get correct Dx of Ankylosing Spondylitis. Certain diagnosis is often from damage (fusing) on an xray (sacroiliac joint). it could take 7 years for the damage to show up on an xray. With that said, a Dx can be made sooner by other symptoms.

Both IBD and AS can be treated with TNF-a blockers. they are not all the same. Remicade and Humira are indicated for both AS & IBD.

Sorry to hear of your pain on top of the Crohn's. I have AS & Ulcerative Colitis.

I would recommend being proactive with the AS. If you have it, you will be dealing with it for a very long time. It can be disfiguring. you should be aware of the other types of inflammation that can occur. Best wishes.
Wow, I thought I had Crohn's AND arthritis AND hip and back pain (I also have scoliosis) but I am thinking it is all one. I had read about Ankylosing Spondylitis, but I decided to pretend it didn't apply to me. I am in severe pain, both hips and spine (and many joints) but have no insurance to have it checked out. At least I am understanding what is happening to me. Thanks so much!
01-04-2013, 12:45 AM   #8
nogutsnoglory
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I have been having really bad joint and muscle pain as well as mid spine pain. I didn't consider this disorder until I remembered they said I had a bamboo spine and couldn't give me an epidural before surgery.

I am going to see a rheumatologist to see what's going on. I also have neurological issues so I can't rule out lupus or fibromyalgia. My body hates me.
02-13-2013, 12:21 AM   #9
GoJohnnyGo
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My symptoms were so evident I was diagnosed with AS by my Gastroenterlogist. I have significant bone fusion which affects my posture.
03-02-2013, 10:18 AM   #10
Kinsey
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My brother was diagnosed at age 8, he's 51 now. They diagnosed me with it at age 21, they were wrong with my diagnosis. You definetly would have a lab work showing that you have the HLA-B27 factor in your blood (though 15% of general population have that) I had it and they just ran with it, leaving me crippled up w/pain for 10 years going to the National Arthritis Rehab in DC. We'll they were wrong and all those drugs (mostly anti-inflammatories really did a number on my stomach. If you have the AS their should show up on x-rays etc. bones fussing together, lots of times it start with the toes, then knees, then back and then my brother no has little expansion of the chest bones (ribs) while breathing. I was mad has heck to find out after 10 years of taking Tolectin and stuff that I hadn't been diagnosed correctly. Have you had an MRI? Hope some of this helps. Kinsey
03-05-2013, 07:15 AM   #11
Kinsey
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My son is the one with Crohn's, my sister has Lupus, some family gene thing with a lot of tension growing up may have helped bring out these autoimmune diseases. My son is 18. Got retested yesterday to hope and pray that he has cleared the C-Diff, otherwise I am headed with my son to the only hospital I know of in Virginia that does the transplants (fecal). I don't want to watch him wither away. But for today I am optomistic because he had a formed Bowel movement or a few this week, firs time in longger than I care to share. Kinsey
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