Ankylosing spondylitis: anyone else?

My name is Lynn and I am a mother of a daughter that was diagnosed with AS when she was 6 years old. If you have AS you need to be treated by a rheumatologist. I have read many concerns about the biologics (Reminade, Humira, Cimzia, Enbrel, Actemra, Orencia, and the list keeps growing with new drug development) but biologics are the only way to prevent longterm joint damage, including joints fusing, so they are highly recommended. If you can prevent joint damage you can avoid surgeries for fusions and joint replacements. There are risks that I understand but we finally gave in when my daughter was confined to a wheelchair from an arthritic flare. The biologic got her up and walking again (along with some painful rehab) so she has worked her way through the ones I listed earlier. Sometimes they stop working after a few years so you need to switch meds, but after being off one for several years you can return to it and it should work. The biggest issue is that they all suppress your immune system so you need to consult your doctor when you get sick (flu, fever etc.) because you will probably have to stop the biologic for a few weeks so your body can fight the bacteria or virus. Biologics are much safer than steroids for longterm use. If you have AS the Spondylitis Association of America is a great resource.

Hello, I had a CAT scan and the findings state I have ankylosis across bilateral facets in L4-5. I am in severe pain, I have several problems with my spine which have me out on disability. I have all the symptoms of AS except the fever. My question: my spine doctor says he can’t put this problem on my short term disability form because it’s healed??? From what I’ve read, it’s a progressive disease. I’m in severe pain. Can anybody shed light on this? Thank you

Hi @therobbs,

You may notice that I moved your discussion and combined it with this existing discussion on Ankylosing Spondylitis. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Thank you very much!

Sounds like me. My Rhumatologist states pain everywhere but cannot firmly say what is causing the pain other than RA. I was admitted three times this past month for falling. The doctor first saw just fixed me and sent me home after one week No statements no nothing. WELL wait a minute.....I crushed my Vertibra and had to have cement placed in my back. BUT, AT CAUSED this? The second time one week later, I fell on my face on Marble floors. I did not know this as when I finally was able to call my kids, I was in the living room. When they showed up, they were shocked. I was blood from top to bottom. I had hit my face and dd not even know it. I do not remember the event. My doctor (a hospitalist said I fainted or had a seizure. Let me tell you right now, a hospiltalist will not follow you after you leave the hospital. SO MAKE SURE YOU have covered everything. You will not receive any medications you may need from him or her. OK one of the HOSPITALIST said I had seizures or ore serious. I am in big trouble as I disagreed with both of them. BUT WHAT do I do?

Yes. Newly diagnosed. Doing Humira injections. All still so new to me. Have any advice for me?

Thank you for the reply. I actually was recently diagnosed also. They are saying since I got it later in life (50), they think I have a mild case. I am on Methotrexate and Prednisone. Can I ask what your symptoms are like? Thanks!

<p>/Wondering if anyone has anklosing spondylitis</p>

Hi Zina... you can have the HLA-B27 gene and not have AS... "Up to 90 percent of people with the disease have the marker, which is part of a family of genes that plays a central role in the immune system. But while most people with ankylosing spondylitis have the genetic marker, only a small percentage—perhaps one to five percent—of people with the gene develop the disease, suggesting other genes and factors are involved." https://www.niams.nih.gov/newsroom/spotlight-on-research/scientists-gain-new-insights-genetic-mechanisms-ankylosing

hello.
do you know the feeling when someone closes the door on your hand/foot with a lot of force? it feels like your bones are being crushed. i have that pain almost constantly and diffusely in many bones. the veins in my hands also swell and hurt a lot. and i have a burning sensation in my skin, especially face, when touching most surfaces.
i was diagnosed with ankylosing spondylitis based on a nuclear scan of my spine that showed hot spots in my sacroiliac joints. i'm 21 and this is disabling me. just looking for input.