Ankylosing spondylitis: anyone else?

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?

2 & 1/2 yrs

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!

I'm thrilled the infusions are helping.

Staying active is so important with this disease. Though I do understand the PJ days. I was forced to retire in my mid-40s due to disability from our disease and am now in my mid-50s. Though my back is so much older.

Having supportive friends makes all the difference. I've lost friends over the years who just weren't able to understand. It didn't help that I didn't even know I had a disease for so many years.

Enjoy the rest of your week.❤🌻🌺

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!

@rosemammag I wanted to welcome you to Connect. It sounds like you are good at advocating for yourself and doing the things that you know will help you feel better.

Has anyone had surgery requiring 2-3 month recovery. In my case I had Ankylosis in my left big toe joint. Trying to find ways to maintain mobility and reduce stiffness during recovery which requires a lot of time with leg elevated. When I am moving around it is with a boot which also wreaks havoc on my body.