I don’t understand people who won’t take biologics. I mean they’re often life-changing and surely the possible side effects are not as bad as what untreated disease will bring to you.
For me it is a matter of diagnosis and prescription. I don't have a license for doing either one. Biologics are relatively new and only approved for a few inflammatory diseases. Combine this with the cost and many people are not given the option. I think rheumatologists need to be flexible and creative to prescribe them and get them approved. Another factor is age and until recently they were not even on my radar. I heard all the commercials but they didn't seem to apply to me.
Thank you for those snippets, Ginny. Having both SpA and a systemic autoimmune disease (scleroderma) with anticentromere antibodies, I find this very interesting. Wish I could see the slide with the lists of genes and what the overlap is. My rheumatologist tells me that there are certain immune-modulated conditions that are virtually never seen together (he cited RA and gout), and mine fall in that category.
There is a feed on this forum dedicated to the topic of diet.
regarding your original post, If I may make one suggestion to see a GI doc to rule out anything dangerous. you probably already did this.
I personally had no issues with gut in younger years. but my UC started at age 41. That related disease is a mess. I did a journal and did what my doc called an 'allergy elimination diet' to test different foods. generally, not much set off an AS flare. I think I feel better when I weigh at my lower range. I do modify my diet in an 'anti-inflammatory' & and a 'colon gentle' way, especially to reduce a UC flare (my recent colonoscopy was 'pristine' :-). That seems to help me feel better along with other things I do.
Humira caused my AS SI joint much worse - including the buttocks and quad muscle pain. So I stopped it! Meds do have side effects and don't always work so yes, communicate with your MD. And know that AS does not always cause an increase in the usual labs measuring inflammation (CRP, Sed Rate). Second opinions are helpful too. Don't assume all doctors know how to deal with this condition. Good luck!
1st symptoms came on 1985 Severe low back pain / SI joint pain; felt like my leg was dangling - pain 10# - very difficult rolling over in bed, standing up from sitting, driving - pain less often these days which is maybe due to SI joints being totally fused? Buttocks pain / Quadracept muscle pain Radiating Quad and Hamstring pain down my leg Hx rib pain; back pain, neck pain causing changes in my vision. Bilateral Uveitis - Anterior and Posterior - Early on warning symptoms include headache, scalp tenderness and pain and when active feels like a toothache in my eye socket. Pain especially bad when in bright light or trying to read/ focus my eyes. I have finally learned to wear sunglasses when indoors when a flareup occurs to keep the iris open or more relaxed. It helps! When in an active flare up; Fatigue creating nap times and needing more sleep at night but difficult to sleep because of the pain. Emotionally down; Weakening grip strength - maybe from arm issues below or just losing strength?
NEW this summer Rt / Lt Shoulder and high (right) arm pain. At first notice, tingling/numbness in my right hand/fingers upon waking. Following symptoms have evolved on my right arm; A pain beyond anything I felt came on - overnight. Have no idea what triggered. Felt like a wave of pain. Pain seemed to regress when I would hold still or hold my breath and keep my arm's elbow tucked under into armpit. Change posture so am hunched over...? Pain was beyond 10# when bicep and/or tricep do their thing - pain felt like the muscle was trying to twist. Deep bone pain in arm. Wrist and elbow joint pain on Right Arm- seems like I can feel pressure within in wist upon waking. Stiff and pain #6. Wrist doesn't appear to swell. Limited range of motion with my right arm/shoulder due to pain or due to lack of use. It's been 5 months since I've limited arm/shoulder use because of pain. Rt Arm/shoulder points of tenderness includes scapula, high right corner of chest and tricep and bicep - 6" down from the shoulder. The pain has been excruciating when the cramp like situation occurs. My right shoulder feels "sick". Very disruptive to sleep, sitting and working. X ray from primary showed nothing. Primary questioned rotator cuff but don't feel like I had done anything to cause a RC issue. This intensity of the pain feels like my pelvic/lower back did when it was inflamed and actively fusing (80's & 90"s)
Yes tinnitus is awful with cervical pains. This morning I tried to figure out if this was hopefully the fridge that was whistling. Unfortunately not. But I still keep it because it’s louder than the whistle
I have been watching today a movie about microbiome. One of the herbalists innit mentioned Reishi mushrooms another wormwood as tnf blocker. Another specialist advocated nutrient dense salt as possible flare remedy. Anyone tried?
A lot of that site is over my head too. But the information I can understand is very interesting. There is a link at the bottom of the page that leads to a similar page on axial arthritis.
Here are my thoughts on your questions. Keep in mind, they're worth exactly what you paid for them.
1) It sounds like you have a variety of diagnoses floating around. If you and your rheumy are pretty sure you have spondyloarthritis of some sort, it would probably be worth continuing the biologic conversation with your rheumy.
2) A second opinion might be helpful, especially since there seems to be some question as to what condition or conditions you actually have.
This is an excerpt from the book The Two Kinds of Decay: A Memoir by Sarah Manguso. The book is often funny and very moving. I'd recommend to anyone that wants to get an idea of what a chronic and debilitating illness is like - although the author doesn't have A.S., she has chronic idiopathic demyelinating polyradiculoneuropathy.
Secrets One day in 1997 I was at Mars Bar, on the Lower East Side, with the man I was having an affair with. The man had a girlfriend. We played chess at the Thompson Street chess store and went out to dinner and made out in cabs. I was twenty-three and had everything I wanted.
I was still taking steroids, but my excitement at having got well enough in two years to graduate college and move to New York had made me furiously happy.
I was an intern at a magazine, second shift, three or four nights a week. Afterward I’d go to Pravda with the man I was having an affair with, and we’d drink chocolate martinis, which were a fashionable drink that spring.
So one day we were at Mars Bar with a friend of the man I was having an affair with.
The friend seemed manic. He was funny and verbal. We all took turns telling our best drug stories.
Then the friend of the man I was having an affair with said, The best drug I have ever taken was steroids.
And I said, Me too! Do you have MS? I knew that multiple sclerosis and its sister diseases, like mine, were commonly treated with high-dose corticosteroids.
The bar was very loud. The man I was having an affair with didn’t hear. By then a few more people we knew had shown up.
The friend of the man opened his eyes wide and said No! but didn’t mean it. I took him aside and apologized, but I wasn’t surprised when he began to weep. He said, I’ve never been able to tell anybody that, and I hugged him.
His tears seemed fake, though, and I wasn’t surprised when he became an actor.
Methotrexate helps my non-spinal symptoms. I had terrible tennis-elbow-like pain in my right elbow and forearm when I was first diagnosed and had had it non-stop for many months. I had tried different NSAIDs with no success. Methotrexate brought it down to almost nothing.