[QUOTE=jpower50;3744992]My daughter, 17, was diagnosed with CRMO March of 2007 after having 12 bone biopsies on her ribs. She has been taking Sulfasalazine and Piroxicam. Her pain has gone from a 9 to a 4 but it has stayed at a 4. Her doctor wants us to think about Methatrexate. I'm afraid of what might happen since her immune system isn't that great as it is now. Any thoughts?
That's a good question that you might want to discuss with your doctor. Usually these kids have an overactive immune system and the methotrexate is used to calm the immune system down. For cancer patients, methotrexate is often given in very high doses but with CRMO kids, they give it in much smaller doses.
My daughter was on sulfasalazine and naproxen until we found out she was allergic to the sulfa. She then took methotrexate for six weeks but we didn't have any success with that. My understanding is that some kids and adults do get good results. My 15-year-old is now on Enbrel, a completely different drug and one that is very expensive. Methotrexate is much cheaper and the insurance companies generally comply with the doctor's orders. If you move past the methotrexate, and decide to use Enbrel, Humira, or the like, your doctor may need to work with the insurance company. We had to appeal the initial insurance denial of the Enbrel.
My daughter doesn't get sick often but when she does, her bones often hurt and her lesions seem to flare up. We've not had concerns with suppression of the immune system but we're always on guard. We were told to delay Enbrel injections if she has a fever. She's required to get a TB test annually while on Enbrel. If you go to the methotrexate, just make sure she's seeing her doctor for the regular blood tests and call your doctor if she's ill while on the drug.
Good luck and all of us CRMO parents are hoping she goes into complete remission. Hope to hear from you again. We could all use a little more support!