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I didn’t treat my spondylitis for about eight years; one, I had a scare with CMV and hospital stay; and two, my Rheumatologist retired and finding a new one that would accept his diagnosis was nil. Now I am paying for it with full spinal damage. Even though the methotrexate and hydroxychloroquine have my inflammatory numbers completely down I hurt from the damage done those years. I hope you can find something that will work for you and slow the progression.
Replies to "I didn’t treat my spondylitis for about eight years; one, I had a scare with CMV..."
Hello.. For one I know as a believer in Jesus Christ He alone can heal me.. I believe God does use medications. He alone sets the stage .. For me any biologic didnt work and honestly i take natural remedies.. I pray daily walk and watch my diet.. I know many that take medications and they have alot of other conditions, which I believe are side effects of the meds.. I know in my heart God will heal me with the natural and my cooperation in diet, exercise.. Im not dissing anyone who takes medications. I was in bed with pneumonia when i was on biologics. I have had pneumonia 4 times.. I am presently recovering from covid pneumonia from Jan 2020.. I have long haul and some days i just dont feel good.. So I pray you are healed and find the right cure. For me my faith is.. Jesus can only heal me.. Thanks for the reply.
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I'm in the same boat. I was diagnosed with spondylitis about 30 years ago. I also had an aggressive type of uveitis along with spondylitis. My ophthalmologist treated the uveitis aggressively with high dose prednisone whenever it flared. I always had leftover prednisone on hand to treat the pain caused by flares of reactive arthritis.
I never saw a rheumatologist until 15 years ago when I was diagnosed with PMR in addition to spondylitis. I needed to take about 40 mg of prednisone daily for the first few years to keep all my autoimmune conditions quiet.
About 4 years ago when I was unable to taper off prednisone, a biologic called Actemra (tocilizumab) was tried. I was then able to taper off prednisone and now everything is being managed with Actemra. I have taken Actemra for 4 years and haven't had any serious side effects while taking Actemra.
Prednisone managed the pain reasonably well. Unfortunately, prednisone didn't prevent the inflammatory damage. My lumbar spine is now a disaster zone. I'm seeing a neurosurgeon tomorrow to discuss a lumbar fusion. The surgeon has said that an MRI shows that the nerve roots from my lumbar spine are being "crushed." I have a fair amount of nerve damage to go with everything else.