Sacroiliitis?

Hi Hotaru,
Welcome to the club...and it is a very big club.
I have had it for years...some years it is manageable with nothing but advils and others I am practically handicapped.
This has been a bad/good year.
I did real damage to it when walking up the hill/stairs (1 mile) to the subway with all of my books/papers for work. I carried most of the weight on 1 side (like all girls; purse, carry all etc in the right hand)and by that night the flare was the worse that it has ever been.
Spent a really lousy winter mimicking a 90yr old woman. (hubby only laughed in the begining...then the houmour of it all wore rather thin).
I have never allowed them to give me steroids. My Rhumy is against them, saying that the pain only comes back worse afterwards. He puts me on Naporxin 1000 1/day (with something to protect the gut) and an opiate for the pain.
I use heat/cold packs alternately, a board under the mattress (buying a new one very soon) and Physiotherapy 2xs weekly. (just got back)
He massages the back, concentrating on the sacroiliac region (butt, lower spine, upper buttocks/hip) and then works on unlocking the rest of the back that compensates when we walk funny (not funny Haha).
He then puts the pads on it and sends electronic waves into the zone for 10mins (gives truely deep muscle stimulation for better healing) and infrared lamps to heat the area.
I walk out feeling better but it is a short term thing.
What really, really helps me is rather paradoxal. Workouts. I can no longer run so I walk up hills.
Properly dressed and wearing adapted shoes I climb a hill and or stairs in a park. The workout (up and down) lasts about an hour. By the end of the workout I feel fantastic. No pain. That is what inflamation is all about; the less you work it, the more it hurts; the more you work it, the less it hurts. You can't do that during a flare. You just have to wait it out, walk a little at a time to not stagnate and give yourself objectives.
Once the flare is a bit better (cold packs do wonders), start back on the exercise. Use the huge yoga ball to stretch out the region, use isometics to stregthen the area and keep at it.
This can end up being a lifetime thing (my case) or temporary so you really have to work hard at not letting it settle in and grab you.
Good luck..This is not an easy battle.
Sharon

My daughter is 11. Started with "hip" pain at age 5, and had it off and on. Worsened as she got older... NSAIDS worked, but began to quit. At 10, we finally saw a rheumatologist, who watched her for a year... At 11, the pain worsened, spread to both sides, we had an MRI done that showed sacroiliitis and enthesitis. Pushed it a little further, then were waiting for approval for Enbrel when, while on diclofenac, she flared with her first flare of Crohn's colitis.

Now the arthritis is linked to the IBD.

The peds rheumatologist said in kids they want definite joint sparing, and that some of the "lighter" meds (for lack of a better term) do not cover sacroiliitis well. That's why they go pretty quickly to a biologic these days. It's all about joint sparing.

Of course, Enbrel isn't approved for IBD, so we switched our game and started Humira instead. She's also on methotrexate, but that is given as an immunomodulator to help the body not make antibodies to the Humira.

She is in remission from both issues at this time. And her sacroiliitis had gotten pretty bad. She currently is a normal preteen with full range of motion and no pain.

So, I'd ask about a biologic. My husband takes Enbrel for his psoriatic arthritis, and has had really good results.