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.
The Biologics by Enbrel are immunosuppressants and that means that you may be more likely to develop infections and to have trouble fighting them when you're on this type of medication. If you do develop an illness like a cold or flu, doctors usually recommend going off the medication until you're better, as continuing to suppress your immune system during illness will make it harder for your body to fight the disease and more likely that you develop an infection that will require antibiotics. I haven't heard of other people on Enbrel needing to carry a thermometer and antibiotics, so I suspect that is a precaution based on your past medical history and your allergies to a number of antibiotics. Whether you will be very susceptible to illness and infection remains to be seen - I've heard of people who are very sensitive, yet others manage well with basic precautions such as frequent handwashing, asking family and friends who are ill to stay away until they're better and carrying a bottle of hand sanitizer for use when needed.
One of the common side effects of the Biologics is upper respiratory infections, more commonly known as sinus infections. This seems to be because these drugs increase your mucus production and once it sits there in your sinuses, they may become inflamed and you have a festering stew. Throughout my "career" on these drugs, I've found a number of tricks to help keep these sinus problems down to a dull roar, which may help minimize how often you need antibiotics. I wrote a post on how to manage medication side effects last year which includes a section on dealing with the sinus related side effects and you can read that here.
The Biologics carry a risk and a higher one than many other medications. The way I've come to look at it is that a really big problem needs a really big solution and really big solutions often carry more risk. Each of us decide what risk we're willing to take and when the benefits of taking a drug outweigh those risks. It sounds like your doctor is monitoring you closely, have given you a "safety net" and that you have decided it is something you're willing to do to get your life back. Enbrel was my miracle medication - I hope it will work the same for you. Please let us know how it goes.