In one of the support forums (forae?) I read, a recent question asks:
I had surgery 3 wks ago and am off my Humira for awhile now. I had a pretty uncomfortable flair these last few days and called rheumy to see about taking some prensone and how much, I had some at home. The answer was to check w/the surgoen. So I did and he said sure. I called the rheumy back and was told that before they would tell me how much I needed to get evaluated by either my doc or her partner asap. Since she had no open slots, I saw her partner who basically asked some questions, looked at my fingers and said okay take prednisone for a few days.
Am VERY upset that I was told check w/surgeon and then put off for another 12hrs, in severe pain, before they said yes. It is only 5 mgs for 2 days, then 2.5 for 2 days. And already I feel better.
Am feeling as though I am not really being taking care of properly, I would think some protocol should be in place for these kind of events, ie: Okay start low dose prednisone and make an appt to come in over the next few days, so I can at least get out of pain? The rheumies go home and relax while I have to remain in pain unitl the next day.
I am looking for another rheumy-anyone have similar experience?
It is really frustrating dealing with pain – probably more so when you know there’s a way to deal with it and you’re left hanging instead. If – aside from this one incident – you like your rheumy, it would be worth using this as a learning experience. Discuss it at your next appointment and ask how similar situations should be handled in the future. Everyone needs the benefit of the doubt every now and then (some of us more often than others). It sounds like you were seen the next day – not left hanging for a couple months.
If you already didn’t really like your doctor, and this was the last straw, then by all means find a doctor whose skills you are confident in. My first rheumy seemed to be very well respected and liked by his patients and by other doctors, but we just didn’t click. I hated seeing him. When I asked (as per standard recommendations), “Under what circumstances should I call you before my next appointment?” and he answered, “You shouldn’t. There would never be any reason for you to call between appointments,” I knew I had to quit dragging my feet and find someone different. (full rant here)*
A few tips for finding a new rheumy:
- Unless you’re independently wealthy, go online to your insurance company and see which rheumatologists are covered under your plan.
- Figure out what your criteria is (age, gender, location, hospital affiliation…). More about that here.
- Read the entirety of Doctor D ‘s four-part series on How to Choose A Primary Doctor – good doctor shopping tips there that apply to finding a rheumy as well as a PCP
- Read some of Dr. Rob‘s posts on doctor/patient relationships: Rules for Patients , How to be a Good Patient, Be Reasonable, An Open Letter to Consultants, and Do You Trust Your Doctor
- Make an appointment with your PCP and say that you’re going to be looking for a new rheumy and would like recommendations. Provide the list of people covered by your insurance company. Your PCP might have reasons to avoid certain doctors, or have a second choice since the first one didn’t work out. This worked very well for me.
It’s stressful when you don’t trust that your doctor is providing appropriate care. It’s worth taking the time to find out if your expectations are reasonable, and if they are, then finding a doctor who’s going to work with you to manage your RA.
*I haven’t needed to call between appointments, but I do know that there are times it might be appropriate.