Ankylosis Spondylitis

Decades back I had spondylitis which the Docs/Chiro did not recognize and it caused me to retire. Now I understand psoriatic arthritis, which spondylitis is one of 5 forms.
I have been able to control it without meds, but takes a lot of effort, which is worth it. First, eliminate as much saturated fat and sugars as possible. Giving up cheese was tough, but I now have a vegan diet with fish once a week. You need to eliminate the sources of inflammation.
Research cytokines that are good guys that can become overactive and cause our immune system to respond which creates inflammation. Research anthocyanins which calm the cytokine storms. They are in deep colored veggies and fruit like red cabbage, blueberries, black beans, red onions, blackberries, black lentils, purple carrots and black grapes. The anthocyanins are fragile so it is best to have the fruit/veggies raw, such as a coleslaw with red cabbage, red onion and purple carrots (I buy at Whole Foods). Need to have them at least twice a day with fruits as additional snacks. I "hunt" each produce department for the black and blues.

Here is a link to a UK site PAPAA, Psoriasis and Psoriatic Arthritis Association. They have some good info and tips. https://www.papaa.org/news/current-features/

I am 69, diagnosed with Fibromyalgia in my mid-20s. About 10 years ago I was diagnosed with RA, and put on Methotrexate and Hydroxychloroquine. I'm now on my 7th (!) rheumatologist (because I told my then-rheumo I wanted to get off the methotrexate due to Peripheral Neuropathy and he told me "My way or the highway"). New guy also tested me for HLA-B27 which came back positive. So now I have the Axial Spondyloarthritis diagnosis too. He started me on Simponi infusions in March. 4 weeks apart for the first 2, then every 8 weeks thereafter. Next infusion is June 3. He told me not to expect any relief until the 3rd or 4th infusion. One thing that I have noticed is that over the last few years, my systolic reading, which had always been between 102-106 had begun to be measuring between 140 and 180! SO MANY DOCTORS would say, "140? That's good!" And I would respond, "But not for me it isn't." I have come down to in the range of 120 since the infusions. Not great, but better than it had been. Still feel pretty terrible, but I am keeping my hopes up. If it's not feeling better after the beginning of August, I will need to regroup.

@hlab27 they don't want amd I know they did amd hide it Son is HLA-B27 positive

Hi, I also have the gene and am positive for PSA. It's very painful and flare ups are debilitating. I totally agree in trying to lessen the inflammation and am thankful for the above posts that talk about it. Thank you for sharing that. My Rheumatologist started me on Tremfya which seems to help about 80%. Lowing inflammation through diet helps somewhat even though I hated to give up cheese and hate fish. 🙂 Living with less pain is worth it. Heated rolled up blankets under the painful area that is inflamed helps some and even movement although that makes you want to hit a high note in singing when the movement first begins. Keep us updated on how things are going and may every moment be less painful for you. Have a blessed day.

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.

@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 ❤️

@fairn thank you for this information. I will talk with my rheumatologist because it would be good to know for both my son and my daughter.