It has been a few months since I wrote a share post so I thought I would write some of my trials and tribulations since my last post. First my rheumatologist thought of switching me from Enbrel to Humaria since my inflammation never went away on the Enbrel and some of my joints are still swollen and painful. I will use the Humaria pen for injecting myself similar to the Enbrel pen. There are a few differences between the pens but I have found both are really simple to use. The thing I cannot get over is the cost of these medications. I mean really a third world country could supply food to a whole village for the cost of one month's supply of these biological medicines. The worst thing about the medication switch (other than the severe pain) was going though the wait of getting the medicine approved through the insurance company, my rheumatologist getting the insurance company and Humaria company the correct paperwork and test results. I had to wait over a month to get my first dose of this medicine. Without the biological meds my RA went berserk. My feet, hands, elbows, knees and fingers were so painful that I could barely function. Work was the last thing I wanted to think about but I only missed one day during that month. Don't get me wrong I am not complaining since I did get the medicine and my symptoms are starting to get somewhat better (I know there are plenty out there including my Mom that have trouble getting these biological medications) but I was feeling miserable without the medicine. One thing I have determined from this is the biological meds have helped me deal with my RA in a way that no other meds have come close to helping. I am worried about the long term effects of the biological medicines but at least I have "closer" to normal life with them now with my family and small children.
My other thought from the past few months that I wanted to share is how my rheumatologist treats me as a patient. I get really frustrated with my rheumatologist. It seems like he has no clue what meds he has me taking for my RA and appointments take forever and a day. I keep track of my medication, dosage, time I take them on an excel spreadsheet but he asks me what I am on and when I take them as if he has no idea what meds he has me on. He commonly tells me I can't take a certain medication because I am on another medication that when he says it I am not even on it or have ever been using. Why do I have a chart at his office? The last time I went in tried to cancel on me while I was waiting in the lobby. I took off work as a vacation day to see him and let me tell you I was more than a little upset. He then seen me and told me that he was glad he let me keep the appointment since I was in so much pain and discomfort. I know things come up where appointments have to be cancelled but this is not the first time they tried to reschedule when coming in for an appointment. The receptionist at the desk told me that he does this all of the time to patients. She went in and talked to him and he then seen me. Am I being irrational in thinking that I deserve a rheumatologist who knows what medication I am taking, timely appointments so I can keep my job and keeping appointments that I have scheduled? I almost feel like a number instead of a patient that pays for service. I am not trying to be negative and I do appreciate the opportunity to visit a rheumatologist but I just feel frustrated.
Hey BuckyB,
glad to hear the meds are relieving some of the pain. If the doc seems to be THAT distracted, then you should find a new rheumy. What I've found in my search for one, even though I live in a pretty big city, the wait times to get in are so long! I mean, are there THAT many rheumatology patients and not enough doctors? I seriously doubt they make rounds at hospitals, or do surgery. Why does it take so long? When I got DX a few months ago (July), the doc i was referred to by my PCP was out til October (appt was set up for last thursday, and i kept it, JUST IN CASE)....i can't believe, knowing that i hadn't been under trmt for RA that they didn't try to get me in somehow....c'mon.. i called around on my own (fortunately my ins co allowed me direct access to a specialist). i did find one and they were booked out a month, but put me on the top of the cancellation list and i got in in 2 wks. he put me on nsaids, re-tested me, and i've been going in every 4 wks. I wasn't sure I was impressed because he's a man of few words, but he is thorough, i have to give him that. when i see him, he goes over the notes in my last appt, recaps our last visit. At first i considered finding someone else, but forget it, i'll stick with him. Even though we (RA folk) are a small percentage of the world's population (1%) we deserve the same care and attention as everyone else, right?? good luck. i hope you do find a doc that cares about you and not his golf time!
Thank you for sharing your experience with changing rheumatologists. I live in a small community and we only have a few rheumatologists in my area. I remember getting in to see my current rheumy that it took forever for my initial visit. I am discouraged by my current rheumy but I must be a glutton for punishment since I keep going back. I also have a hard time understanding my rheumy since English is not his primary language and anyone with this disease we get a lot of information dumped on us all at once during a visit. I often leave my appointments feeling confused about what exactly what I should do to get myself better, what labs I need to go get completed, where to go to get labs, etc. I feel I have been more than patient (no pun intended). I guess I just wanted to know if my frustrations are warranted or if everyone felt this way about there rhuematologist.