Looking For Support and Encouragement.
Hi community! I don’t typically post. But I’m looking for some encouragement and hope.
I started on enbrel when I was 19. Which immediately helped my ankylosing spondylitis diagnosis after a few years of trying to find why my hips and lower back were in pain. Enbrel was a miracle drug… After about 9 years the efficacy wore off and I was advised to switch to humira. Which was a seamless transition. Another 8-9 years and it’s august 2025 when again the drug I was on, humira, wore off its efficacy. I wasn’t too worried because of my previous experience of another drug working quickly. I thought… oh let’s just switch to a different drug!
My rheumatologist recommended cosyntex. Because of the previously ease of switching to a new drug, I was naive in thinking it was easy to just switch to something and continue with my normal life of hanging with family, hiking, fishing, swimming, etc.
I was on cosyntex and things got worse. Crazy back spasms eventually towards the 2nd month, but was told to hang on for 12 weeks because it may take that long. After reached 12 weeks my doctor switched me to cimzia. Which began helping… but by the 12th weeks was helping around 60-65 maybe 70%. My doctor explained to me that the drug should help get me to 100%. The pain was typically in my hips and SI joint but has grown up my spine to my middle and upper back. On Cimzia I had no hip or lower back pain.
After the 12 week mark on Cimzia and the want to get to 100%, my doctor switched me to rinvoq. I am now on rinvoq into my 6.5 weeks and it’s just as bad as cosyntex… I’m on steroids now to help bridge the gap from 6.5 weeks to 12 weeks because my doctor says i need to wait the full 12 weeks to see if this works. It’s been over a year and I haven’t been able to do anything that I love, let alone put my own socks on, get in and out of a car or bed.
I’m trying my best to stay positive. Im looking back and wondering if I should have stayed on cimzia longer.. to see if it would help the upper back more but now im on rinvoq. I’m looking for help or encouragement or anything.
I’m starting to become depressed. I want to help around the house. It’s difficult because my back spasms have grown worse. I am recently married and this has never been an issue until this past year. My wife is amazing and so supportive. I am hopeful but it’s difficult to see how I could get back to where I was 1 year ago…
my honeymoon is in one month and I’m worried that the trip will be miserable.. (it will be 12 weeks in the middle of my trip).
Has rinvoq eventually helped you? I need some positive feedback or support from the community.
TL:DR
I’m currently having intense lower back spasms that trigger when I try and get in and out of bed, a chair, my car, changing clothes… has anyone dealt with this, steroids are the only thing keeping me moving until Rinvoq hits 12weeks.
EDIT: added the TLDR