Today I saw my rheumatologist. I walked in carrying the hard cover Enbrel information book that is in the waiting room. As soon as he came in and saw the book he said, "I was going to ask you about Enbrel!" I replied that I was there to BEG for it if I had to. He had some labs drawn and gave me TB test so by Friday (unless I have TB!) I will be starting Enbrel and I have such high hopes! I've read the statistics and they look pretty favorable. I'm just a little concerned now about the cautions Dr. Gutierrez explained.
Some history: the first time RA was mentioned to me was in December 2006 when a knee arthroscopic sugery did not heal well. 6 months later it was still not truly healed. By August 2007 I had my first rheumatologist appointment. The doctor was fairly certain I had fibromyalgia; I was not at all certain it was FM! My joints were beginning to swell a lot and they wer hot to the touch. As part of his protocol he ordered back x-rays to see the shape my back was in after surgery in 2002. That x-ray led to a bone scan, that lead to a trip to Philly and my oncologist, then a biopsy for the growth on my pelvism which lef to another 'suspicious'area in my right axilla (underarm). The worst was yet to come- keep in mind that all through this cancer scare I just knew I had RA. The biospy of my right axilla lynph nodes proved clean- thank God- but I developed cellulitis and was on a PICC line for weeks. Keep in mind since October 2006 my joints were wearing down. Here is the scary stuff, I am allergic to penicillins, ciphro, keflex, sulfa, and tetracyclines. The doctors tried several antibiotics to try to stop my infection. Finding one was crucial and I was so glad to be going home even on IV meds. When I finally got back to my rheumatologist, I hobbled in like a 80 year old with cantalope sized knees! He asked if he could take a sample- he ended up with a quart (kidding, but almost!) of ugly yellow stuff. He then agreed, I had RA despite never testing positive for the RA factor with blood tests.
Fast forwaerd now to TODAY. He really was adamant about several things while I am taking Enbrel: I had to always have an antibiotic with me as well as a thermometer, and if my temp ever rose to 101 or above I was to get to the nearest hospital for chest x-rays to rule out pneumonia. He really stressed that I follow these orders and it made me feel a bit apprehensive.
My question to RAngels who are on Enbrel: have you had similar orders from your docs or is this due to my inability to fight infection with regular first line antibiotics? Or is this something Enbrel patients enbure? It does freak me out a bit because in December after self-injecting my methotrexate I had a fainting spell and had a concussion, I must have hit my sternum because it was fractured and with my inability to take deep breaths I developed pneumonia.
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