Crmo

[gracefortoday]

Has anyone here had experience with CRMO (Chronic Recurring Multifocal Osteomyelitis)? My son has be fighting this now for 4 years. Just wanted to know if anyone has experience with this and what if any treatments actually helped. His is in his right humerus. Has anyone ever been treated with drugs used for RA.

[hrtofluv]

The drug Azithromycin is being tested right now at the National Institutes of Health for teenagers with CRMO and seeing huge improvements.
I have done a clinical trial with NIH for a benign bone tumor study and found the best of both doctors and information with them.
Check them out as well as NORD (National Organization of Rare Diseases).
My son has JRA (8 years old), but if you are talking about the infusions - I would definately hold off. I have done the bisphosphonate infusions and they were horrible.
Post on what treatments you are looking for and see if someone can provide experience for you.
Let me know if I can help.
hrtofluv

[gracefortoday]

CRMO is not an infection as with regular Osteomyelitis and does not respond to antibiotics. My son has done the pic line with heavy antibiotics in the beginning. He has also had debridments done at 3 different times. Finally he broke the bone after the last time they went in. We met with a new doctor and he was telling us that this is an autoimmune problem. I am just wanting to know what treatments others have tried? My son has only one lesion and it takes up about 2/3rds of his right humerus. There is also sclerosing in the bone. He is in pain most of the time with spikes and some leveling off, but always some measure of pain.

[biplanepilot]

Hi,

I noticed that it has been a few months since you posted about your son's CRMO. I was just wondering how you are getting along and if you have had any luck in your research.

I too am starting to research this disease, and am looking for some pointers and to compare our experiences with others who have encountered CRMO. My six year old daughter has been diagnosed with CRMO in the past month. It manifested itself in her left ankle. She had an operation to scrape the bone and drain some fluid. Now her leg in is a cast, and the surgeon told us to give her Ibuprofen as an anti-inflammatory.

If you have any words of wisdom I would be grateful. Maybe a sharing of experiences will be beneficial to us both.

[gracefortoday]

We have just received approval from our insurance company to use Enbrel for 6 months. Our doctor has explained that this drug will stop the immune system from attacking this bone and should stop the pain. My son has just had a new round of blood work and a new bone scan done for a base line. The disease is still active with more uptake in the bone that on previous studies.

To answer "biplanepilot" my son has had this disease now for more than 4 years, he has had several surgeries. He uses ibprophen to control the pain and has been on several stronger ones.

Ask me anything you would like and I will let you know our experiences. We have been to several specialist and have always felt that the doctors really didn't know how to treat this condition with lasting results. This new doctor we are going to has really given us hope.