Treatment of Patients with CRMO

[@musicmama2864]

Thank you for posting this! We are a CRMO family.

[@Swiftie-h4x]

Ny best friend has crmo 8n her legs and for anyone who does this is a message for you: You are one in a million You are strong You are awesome You are brave You are rare You are beautifully and wonderfully made You are loved ❤

[@christianofelicio8358]

I’ve had excruciating pain ever since I was 6, and went to countless doctors. I’ve been told to go to therapy over and over again. Years I’ve been limping and have taken countless blood tests, and still no results. Finally 7 years later, I couldn’t walk at all for three months, and Finally took an mri on my knees. I got a call with my results saying I had crmo.

[@anuradhagoel1091]

How are u now?

[@skibidikayleigh]

I was diagnosed with this when I was 9.Had an MRI and Bone Biopsy. I do also have psoriasis. I’ve had pains in my ankle, knee, and Collarbone. It’s not ideal, but it could be worse. Thanks you for this!

[@shadinasser4542]

Hello dear Please can I contact you urgent

[@angelaunique3626]

My 8-year-old daughter has been suffering from this for over a year and it seems to be getting progressively worse. She has it in the mandible. She has seen many specialists and has received several diagnoses. After receiving an MRI and CT scan she was diagnosed with osteomyelitis and she has been prescribed many antibiotics with minimal relief. She has chronic flare-ups that occur every 7 to 10 days. I wonder if you could review her scans? We have Premera Insurance. I am willing to fly her to you.

[@plz12312]

I had this as a child, it's so awful and I feel it coming back as an adult, and it's getting worse. It's so rare, that I need to get a good doctor.

[@leahizadi6256]

My son was diagnosed when he was 12, now 18. Colchicine once a day has kept CRMO away. I don't hear about using this drug much but thankfully it was the first thing we tried and has worked ever since.

[@mLYDA93]

My son as well , well he’s barely 8 yrs but he limps while walking , doctor said it’s only inflammation , thank god it’s not something dangerous that can risk his life . Need to find a good doctor tho , the one he has right now it’s something else 😫

[@leahizadi6256]

@@mLYDA93 poor guy! It's so sad! We live in St.Louis and had a great Dr if you're nearby!

[@mLYDA93]

@leah Izadi wish we were closer ,. We are from Tx

[@summerserdah432]

I am 39 years old woman and I got Diagnose last year after 2 years of pain 😢

[@OwenTheOven]

I have crmo in my left jaw I found out I,had it when I was 10 now I’m 11!

[@annettecolon4754]

My child started taking Humira for CRMO. Is this medication commonly prescribed for this condition? I'm concerned about the side effects for this medication. Please help.

[@origamiqueen6882]

My daughter is 14 she was diagnosed with CRMO when she was 12, doses of steroids in the IV, indomethacin 50 mg, meloxicam 7.5 nothing works, we started with a surgery, antibiotics and a biopsy, so far the pain keeps coming back every few weeks, lately her rheumatologist talked to us about Humira, unfortunately the side effects are catastrophic and my nephews wife used to get the injections for celiac as it’s also considered an autoimmune disease she was diagnosed with some weird infection disease, then stopped the humira and got better, it suppresses the immune system but infections, fungi, TB can occur.

[@kittykat0174]

@@origamiqueen6882 i got diagnosed w it when i was 11 does the Humaria work?? I did meloxicam and didn't work much, and did infusions didn't help much. What worked for you?? Thinking about Humira but the side effects are bad i heard! Also had a biopsy done but nothing has helped much.

[@whatamievendoinghere5804]

Does this occur in adults? I have a tibial rod in my right leg and also palmar plantar pustulosis in my right foot.

[@StephyGrowsWeed]

under another Video someone said it can also occur in adults. Her name was Wietske Welten. She is on IG as well if u don’t find her here. Did u get a diagnosis yet?

[@summerserdah432]

Yes I have it 😢I am 39 years old

[@cybersecret1045]

I’m 12 and I have it so rip me I geus.

[@whatamievendoinghere5804]

This is great but also hilarious.. as if drs get you testing. I just had to stand my ground to get some blood tests to test for inflammatory markers. Health system in Australia is a joke.

[@oneway6074]

My doctors say i have cno but my Muscle and my nerves also Inflammation and my bones dissolve is that Typical for cno?