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A MySpondylitisTeam Member asked a question 💭
Foothill Ranch, CA
July 15, 2023
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Answer Summary

Members discussed their struggles with managing ankylosing spondylitis pain, with many sharing frustrations about accessing opioid medications... Read more

Members discussed their struggles with managing ankylosing spondylitis pain, with many sharing frustrations about accessing opioid medications like hydrocodone after the opioid crisis made prescriptions harder to obtain, requiring monthly appointments and urine tests from pain specialists. Several members described using biologics like Rinvoq and Enbrel with limited success, with some adding methotrexate or pregabalin to manage worsening symptoms as the disease progresses to more advanced stages with bone spurs, nerve compression, and bone marrow edema. A recurring theme was the highly individual nature of AS treatment, with members emphasizing the importance of finding a trusted rheumatologist, advocating for yourself, staying informed about your disease, and recognizing that discovering what works requires patience and trial and error.

A MySpondylitisTeam Member

Hello I find my pain in back&neck is to painful for advil or acetaminophen I have been using hydrocodone & pregabalin just two a day

October 22, 2024
A MySpondylitisTeam Member

Wow, Mike, that is an impossible question to answer. Every single person with spondylitis will have differences in regard to meds, differing factors such as medication efficacy, toleration and long term outcome. Keep in mind that depending on where you are in your AS journey should be part of your rheumatologists overall consideration of which meds may or may not be a good fit for you. You will be your best barometer in terms of which meds are best for your AS by how your body reacts to each one. The most important advice I can share with you is this: find yourself a rheumatologist that you can trust and can successfully develop a rapport. That physician will only be a part of the team who will help you feel your best. Always remember that you are the captain of your treatment team, so learning as much about AS as you can will help you sort out which treatments may work better for you than others. You absolutely will not know what works until you have the opportunity try them. AS is a fascinating and annoying disease. I am happy to chat with you any time about my experiences...meds--what worked and what didn't for me, experiencing day to day life with AS over the long haul, etc. Good luck in your decision making. Tyler 😄

October 23, 2025
A MySpondylitisTeam Member

The pain is from inflammation and destruction of my joints. It is also from the inflammation of the enthesis and bone spurs and new bone growth that pinches nerves. Also, in this stage that I call number 4 there's something called bone marrow edema. Pain is what this disease is all about. I know exactly where it's coming from just don't know how to get rid of it. Linda

October 22, 2025
A MySpondylitisTeam Member

Cannabis, enough to make you quit caring

October 22, 2024
A MySpondylitisTeam Member

I have been on Rinvoq for a couple of years. It seems to help somewhat. I know my pain is definitely worse when I have to hold back on it when I am sick.

September 15, 2023

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A MySpondylitisTeam Member asked a question 💭