Ankylosing spondylitis: anyone else?

I was diagnosed with Ankylosing Spondylitis about three years ago!

Have been taking Simponi Aria by infusions every 8 weeks! More bad days than good! Lower back is very painful and takes all my energy away some days! Does anyone have any experience with this painful disease?

Welcome @ruth1942, I moved your question about golimumab (Simponi Aria®) and living with the pain of ankylosing spondylitis to this active discussion:

Ankylosing spondylitis: anyone else?
https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/
I did this to help you connect with fellow AS members like @candybeason45 @kelsey1 @kavardell @velvmex and others.

Ruth, how long have you been taking the infusions?

I was diagnosed with Ankylosing Spondylitis about three years ago!

Have been taking Simponi Aria by infusions every 8 weeks! More bad days than good! Lower back is very painful and takes all my energy away some days! Does anyone have any experience with this painful disease?

Hi, Ruth,
Are the infusions helping? I have axial spondylitis and have ankylosing at one level currently. I also have ligaments that have hardened which is another symptom of ankylosing spondylitis.

I currently use Enbrel, a biologic, once a week. I was diagnosed two years ago but have been suffering from AS and psoriatic arthritis for around 35 years. I do have lots of experience and medical knowledge of our disease.

My AS has been very active over the past 7-8 months. My rheumatologist is struggling to find the right biologic for me. In the meantime, my hips, especially the left one, SI joints and low back are really flared up. I seem to have new damage but we'll see for sure when I have my next MRI. Like you, I'm having more bad days then good.

I usually have good mornings once I get moving. But after a while, my back muscles get so tired and stiff from all the inflammation. I always have to get out my heating pad in the early afternoons.

I'm currently also doing physical therapy and I've joined a pool class for people with arthritis that runs on Tuesdays and Thursdays.

I hope you are having one of the good days.

Hi Alisamichelle, I am enjoying a good day, thank you! My infusions have given me some much needed relief from chronic pain! Before being diagnosed I had 2 lower back surgeries! Bulging disc, my doctor called it a Laminectomy! I am very active physically and socially!
My biggest problem seems to be my lower back and left hip and down my leg! Unlike you, I can feel this when I wake up also run low grade fever and feel absolutely awful! Usually do not do much because of this!
Luckily for me, I am at an age where it is ok to stay in my pj’s and rest! My friends understand and are supportive!

Same here...how long have you had AS? I think I have been misdiagnosed. I've been battling this disease for 6 years. Thinking leukemia, RA, now AS. ONLY AS b/c I started having back pain this year. But the last 6 years I've had joint pain and swelling throughout my body. What are your symptoms like? If don't mind me asking....and good luck to you.

Do you know if you tested positive for the genetic marker called HLA-B27? I believe over %90 of people that have A.S. Test positive, which can be helpful getting to the bottom of things or knowing what direction your doctors can go? I have had A.S. since I was 15 and I’m 35 now. (20 years) My symptoms vary depending on if I’m having a flare up. But spinal pain that radiates in to the back, lower back, and hips and stiffness. I get muscle spasms, chronic fatigue and my eyes swell and now wear glasses all the time.
It sucks but I feel being active when I can, has helped a lot! I’ve also eliminated, smoking, drinking and gluten which has also helped eliminate inflammation. I hope you start feeling better soon!

I have had joint & muscle pain for as long as I can remember. I had neurosurgery in 1997. I had my spine fused at C5-6, my disc had ruptured and was compressing my spinal cord. I believe this is what triggered my fibromyalgia. I wasn't officially diagnosed with FM until 2001. I also was diagnosed with endometriosis, interstitial cystitis, IBS, dry eyes & mouth(possibly sjogrens syndrome) PTSD, anxiety, depression, & I have sleep issues. In december 2010 I was very sick with a respiratory virus. This triggered chronic fatigue syndrome. In august 2011 I started to have inflammation in my joints. I was tested & told it was seronegative spondyloarthropy and my rheumatologist now is saying it is probably ankylosing spondylitis. I have tried prednisone, but it only helps in high doses. Methotrexate made my hair fall out, caused severe abdominal pain & thrush & staph infections. I was also unable to stay awake. I have had 3 remicade infusions, but they haven't helped. I take vicodin & ccyclobenzaprine dailly. Im considering trying enbrel.

Regarding ankylosis spondylitis, and psoriatic arthritis.
It sounds like you have been through a lot! I was diagnosed osteoporosis at age 46 as well as psoriasis.
Later, I was diagnosed with psoriatic arthritis and referred to rheumatology. After blood-work showed l was HLA-B27 positive and MRI was in my SI joints. I had edema with inflammation.
The rheumatologist diagnosis was ankylosing spondylitis. I too have dry eye disease, and am supposed to be using xiidra, Which I totally hate. It seems to make my eyes dryer, redder and my psoriasis flare in the corners of my eyes.
I started out on Humira, which I did not tolerate well, headaches etc not to mention lots of cancer in my family so l switched to Cosentyx. I’ve been using Cosentyx 150 ml injections one monthly for over a year and my back pain has only intensified. My rheumatologist is trying to get The pre-authorization for Taltz.
I understand it’s similar to Cosentyx, only some people don’t do well on Cosentyx can do well on Taltz.
My diagnosis has come at age 61 so I have not had proper treatment to prevent the progression of this condition. Every day is painful. I try to stretch, I try to walk, l love dancing 💃 but it hurts! I don’t understand why so painful if it’s good for you? I know it’s important to stay moving, but the pain is intense. The only pain medication I’m taking is meloxicam 15 mg. Daily.
Here’s my question, My friends are going to take golf ⛳️ 101 lessons. It’s once a week for five weeks. I don’t play golf, but I would love to know how and have the knowledge of the game. If I could Learn the basics and play for fun occasionally is this going to benefit my condition or is it going to cause further damage to my spine?
if anyone knows the answer to this question I would love some advice as lessons are supposed to start tomorrow. The other question I have…. I would like to know is how you’re doing if you’re on Taltz for ankylosing spondylitis and psoriatic arthritis.

Thank you!