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Ankylosis Spondylitis

Autoimmune Diseases | Last Active: Apr 3 9:40pm | Replies (30)

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I am new to this group. I am 70 yo and in the late 80s was diagnosed with ulcerative colitis that was difficult to control. I have not had a blood test to confirm ankylosing spondylitis but my rheumatologist based on imaging and inflammatory symptoms indicates this is my diagnosis. I started Simponi aria infusions late August. Over the course of receiving those treatments my inflammatory arthritis went from bad to worse, having issues in my hip, shoulders and my wrist. As I was approaching my 5th infusion and not really feeling that the Simponi aria infusions were helping we talked about other alternatives. Some of the other classes of drugs were prohibitively expensive to try with my insurance and so I opted to switch to Remicade infusions, which can be done every 6 weeks whereas Simponi aria was restricted to every 8 weeks. Additionally, given the level of inflammation and pain I was experiencing as I approached this next infusion, I came across a post on this site that talked about low-dose naltrexone and discussed this with my rheumatologist . I received my Remicade infusion on 3/10 and started 1.5mg low-dose naltrexone on 3/11. I cannot say whether the Remicade and low-dose naltrexone are working at this point since it has only been my first infusion, and I am at the lowest dose of naltrexone.. I have noticed that my sleep is less interrupted by pain and that my shoulder and wrist pain has subsided somewhat. For reasons I don’t understand my hip is acting up again and painful at times. I have always been a very active person having done yoga for 26 years, floor Pilates as well as walking every day. I have had to start PT for my shoulders and hip, and while I know yoga is good given the constraints of my shoulders, wrist and my hip I’ve put that aside for the time being. This is my journey so far. I’m grateful for having found the Mayo Clinic and the support group and have found suggestions on these posts to be very helpful and informative.

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Replies to "I am new to this group. I am 70 yo and in the late 80s was..."

@jbrabazon The HLA-b27 test is a straightforward blood test. I tested positive and encouraged my sister to have it done by my rheumatologist (her symptoms have lasted longer and worse than mine), and she tested positive as well. He told her he wished he'd seen her 20 years earlier, she's already had 1 major lower spine surgery. I was started on hydroxycoroquine which has helped my back pain remarkably; she will be starting infusions. I also have Sjogren's and possibly RA. I think testing for all the possible things can go a long way towards choosing an effective treatment plan. Hang in there ❤️