Could be related to the cuffitis, or it could be independent. I would suggest a rheumatologist over an ortho. I spent years messing with ortho, physical therapy, podiatry, etc, before seeing the rheumatologist.

Hopefully, controlling the cuffitis will do the trick.

Jan

Hi Jan
Thank you for responding. Did you have
effusion in your joints also?
Did PT ever help? Is effusion something
people with IBD get?
I feel so bad for her she has been
sick non stop for two years now and it
seems like it will never get better.

Effusion is just fluid in the joints and is common with any sort of inflammation. Yes, I had it. It was aspirated once to makesure it was not an infection. You can try steroid joint injections, as they can help. For me, though, systemic treatment was necessary. But don't assume the worst before you know what is going on.

I did not find PT useful long term, but liked ultrasoundand other pain modalities.

Does she have any sacroiliac pain (upper buttock area) mostly at rest, and improving with activity? That would point more toward enteropathic arthritis (IBD related).

Jan

The pain has always been in her knees,
and it is constant. She says it
hurts to walk up and down the stairs,
sitting a long time, and with lots of
activity. But has a constant ache.
She is only 12 so it is hard to see
her so sick from not only the UC but
now her joints. Did treating your cuffitis
help?

Yes, it did.

I went from walking with a cane to only using it for balance on rugged hikes!

Jan

So we have an appt for the
Rheumatologist in the morning.
her MRI results showed mild effusion,
some diffuse thickening and mild inflammation
on the lymph nodes in the back of her
knees. I am so scared for her and
what they are going to tell us.
I was hoping things would get better

Just wanted to say I feel for you and am sending good thoughts.

My daughter is 12. She's had self described "hip" pain since age 5, Kawasaki's Disease at age 7, and her first GI/IBD flare at age 11. 3 months before the flare, she was dx with "undifferentiated spondyloarthropathy, sacroiliitis, and enthesitis," which is now linked to her IBD. She had vague "in retrospect" symptoms of impending/brewing IBD for awhile prior to the flare. She'd not gained any weight between age 10-11. She's gained 12 lbs and 3-4 inches since starting Humira. Still a little behind on the puberty scale, but I was, too (though I was on Azulfidine and prednisone, myself).

But she's doing quite well at the moment on Humira and MTX, so there IS hope something can help your darling. Scary meds, but the pain and suffering she was in was worse, way less quality of life, and that's the most important thing. Quality. For years, and at the end (before treatment), it was awful, she limped off and on, then constantly. It was very sad.

Good luck.

Thank you Rachel. I am trying to
be positive for her but it has been
so difficult for her. One complication
after another. I want her to be able to
do activities and feel good again. One of our other daughters was diagnosed with a different autoimmune
disease a few months ago. It has been very
difficult for all of us. It is nice to
hear from someone else that can relate
sometimes we feel like other parents/children
don't really understand.

I am so sorry your daughter is going through this. We won't ever understand why children have to suffer. I will pray that the doctors find a treatment that works for her soon and the pain will subside. God bless her!

Thank you gela.
The Rhumatologist ran some more blood
test today and we will have the results
later in the week. She said mild arthritis
in her knees and she will talk to our
GI doctor about which meds are best.
It sounds like we are looking at either
trying to treat the cuff with Canasa
and the knees with cortisone shots
Or start Methotrexate.