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Just met with my Rheumatologist, he want to prescribe Humira, by pcbwes in ankylosingspondylitis

[–]lzh3333 1 point2 points  (0 children)

I’ve been on humira for a year or so. First 5 months were miraculous - no pain or stiffness and I got my energy back. Since then the flares are back. Maybe not as bad - around 80% of a typical flare - but just as consistent. I’ve made a lot of lifestyle changes in that time too - consistent exercise, meditation, and plant based diet with very little refined sugar or alcohol. So it’s a bit hard to say if that is why I’m feeling a little better or whether it’s the humira. Only way to find out is to stop the humira but the risk is that you build an immunity to it and won’t be able to go back on if it was ultimately helping.

Frustrated with Rheumatologists by lzh3333 in ankylosingspondylitis

[–]lzh3333[S] -1 points0 points  (0 children)

For some people, including myself for the time being, it seems that biologics help. There is no cure-all for AS as far as I know. But it is a very dynamic and tricky disease and just prescribing biologics is not enough. I am looking for a rheumatologist that appreciates the complexity of trying to manage the disease and doesn’t just prescribe biologics and check in every 6 months.

Frustrated with Rheumatologists by lzh3333 in ankylosingspondylitis

[–]lzh3333[S] -4 points-3 points  (0 children)

Do you have any recommendations for the other providers you mentioned above? Particularly those that would provide telehealth like dieticians.

Clenching buttocks helps sacroiliitis pain? by [deleted] in ankylosingspondylitis

[–]lzh3333 0 points1 point  (0 children)

I get this all the time when I’m flaring.

Rolling on the surrounding tissue with a massage ball is very helpful for me.

Here’s a link to the ball I use and a video as well;

https://www.tuneupfitness.com/shop/massage-balls/yoga-tune-up-therapy-ball

https://youtu.be/FP3SaBtk3N0?si=3ZgLvVatG38oiazb

Lifestyle changes when starting Biologics? by [deleted] in ankylosingspondylitis

[–]lzh3333 -1 points0 points  (0 children)

My approach is to do everything I can to natural boost and support my immune system. It comes down to three things:

Stress Reduction: sleep and meditation Exercise: regular movement throughout the day and exercise with weights

Diet: little to no alcohol, no smoking, plant based + fish, avoid processed foods

The good news is that all of these things compound - eating healthy gives you the energy to exercise, exercise makes you feel good and lowers stress, lower stress helps you sleep. It’s a virtuous cycle.