I hope you get to try Actemra. I also hope Actemra works for you. Actemra was offered to me as my best hope of ever getting off Prednisone but it didn't come with any guarantee.
Do you know why it is called reactive arthritis now instead of Reiter's syndrome? Hans Reiter was a Nazi war criminal. I will put a link about reactive arthritis here in case anyone is interested.
https://emedicine.medscape.com/article/331347-overview#a2
--------------------------------------------------------
I'm not a fan of prednisone. However, I give prednisone credit for me not being addicted to opioids. My doctors never prescribed opioids to me except for post-op surgical pain. I mostly took Prednisone for all my autoimmune pain. I have tried many types of NSAIDs and DMARDs. I am relatively new to biologics but I have been on Actemra for more than 5 years.
Prednisone spared me from surgical interventions a couple of times. I was told I wasn't a good surgical candidate for a lumbar fusion because of chronic prednisone use. The spine surgeon didn't think I had enough solid bone to hold all the hardware that would be needed to fuse my lumbar spine. Also, when I needed Prednisone, I was at risk for too many surgical complications.
I had a tremendous response from Actemra. I haven't needed any Prednisone for 3.5 years. Not only was I able to discontinue Prednisone but I also was able to discontinue 5 more medications that were treating Prednisone side effects.
A lumbar fusion is a possibility now but I don't have that much pain anymore. I would need to be off Actemra for a month before surgery and a month after surgery. I could probably be off Actemra that long but I won't do the lumbar fusion unless the pain returns.
My medical problem list now reads a "history of" long term Prednisone use.
I'm not sure how I feel about Actemra because I don't seem to have any adverse effects from it. However, my medical record lists "long term, current use of Actemra (tocilizumab)" as a medical problem.
I don’t consider myself an opioid addict— yes I do depend on them when needed for pain. I also sometimes half the pill and take it with Tylenol ES, 500 mg rapid release capsules. I’m also very careful with how much Tylenol I consume as it is also in the opioid I take. I initially was started on them after I broke my left patella (kneecap), three years ago. Oh that hurt big time! Had to have some hardware surgically put in to fuse the two pieces of my kneecap together . So I took that pain medication cause I needed it. Found that it worked for my arthritis also. They decreased my dosage and I’m under the care of a pain management team for the opioids I take. My husband has to take them since he underwent spinal fusion surgery over 10 years ago and has hardware in his spine. The surgery took care of part of his pain but not all of it! He’s having more issues now with arthritis and osteoporosis. If you are not having a lot of pain, I don’t know if the spinal fusion is the answer— there is just no guarantee with these type of surgeries, sadly. I hope for the best for you in this journey!
My hope is that the Actemra will get me off prednisone and opioids!