Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hi everyone - I am a long-time (8 year) patient of my rheumy's. I found him by word-of-mouth through other doctors - he is highly recommended, very competent, well-trained and a generally nice guy.
But...his office staff (and he, to some degree) are high-maintenance. For example, my doctor gave me a hard time after I cancelled infusion appointments a few years ago after breaking my leg and then experiencing a blood clot and pulmonary embolism afterwards. "You committed to these infusions for 6 months" he said. I explained that I'd called him staff to fill them in on why I couldn't continue the infusions (first due to surgery and recovery, then due to incompatibility of the meds with blood-thinners) and he berated me for not keeping *all* the staff informed (while I'd called the scheduler, I guess I didn't tell the infusion coordinator).
Fast-forward to several months later. We had problems getting my meds delivered timely to their office. At my next appointment, he chided me for not having my meds there in time. I explained that I'd done my best, making at least 2 phone calls to the specialty pharmacy to make the delivery happen on time. "Well, we seem to consistently have problems with your order" he said. At that point I kind of melted down into tears, saying "I feel like a kid who's being scolded for doing something wrong when I make every effort to do my best to be here, on time, meeting my commitment to try these meds (oh yeah, and the receptionist once marked my chart "LATE!!!" with 3 underlines beneath the word because I was 10 minutes late to an appointment - and that's even after I called to say I was running late! After that, I just left my house earlier and didn't repeat that incident. That was at least a year ago.) Anyway, about the pharmacy and the meds - we switched to another specialty pharmacy. That seemed to solve the delivery problem - the new pharmacy is much more responsive and easy to deal with. All this occurred about 4 months ago.
Okay - so that brings me to today. After the last meds incident, (and my tearful melt-down), all the office staff, including my dr, started being extra-nice to me, which of course helped me feel better about what had happened before. The dr is on time 4 out of 5 times, but this morning he saw me an hour late. He entered the room without apology or explanation as to the delay. I asked him whether the office was running behind, and he got tense. "Why?" he wanted to know. "Well, I have a conference call in an hour and I won't be able to keep that apt" I said. I could see that he was unhappy that I'd called him on the delay, and then he threw in "oh, and my infusion coordinator is leaving, so you'll need to get your meds here without a reminder - we've had a problem getting them here on time." I explained that I don't wait for the reminders, that I haven't had a problem for months, and he said "I'm not here to get in an argument with you." WTF?
On the somewhat-minor list of annoyances - no cell phone reception or wi-fi in the building and rooms. This is less minor when I miss an important call or can't send an email message or text to work - especially when I'm delayed returning to the office (like today!) Apparently, several staff members have shared that patients would really appreciate this - for months. No movement from the dr. This suggests a general disconnect from patient's needs to me.
So - if you've read this far (thank you!) here are my questions:
1. Do you handle the ordering for your infusion meds, or do you get assistance from the dr's office?
2. If you do the ordering, are you allowed to take delivery of the meds? I can't bc my dr won't allow it and therefore I can't confirm delivery unless I call them.
3. If you get a monthly infusion, how are you able to get your meds delivered earlier than a few days before the next 30-day infusion appointment?
4. Despite his expertise, excellent reputation and our long-standing relationship, is it time for a "divorce"? I live in the LA area and there are plenty of doctors around. I already travel about 20 miles to get to his office and I don't mind driving a little further if it's once every 4 weeks.
Any input out there is welcome. I'm pretty rattled by this!
But...his office staff (and he, to some degree) are high-maintenance. For example, my doctor gave me a hard time after I cancelled infusion appointments a few years ago after breaking my leg and then experiencing a blood clot and pulmonary embolism afterwards. "You committed to these infusions for 6 months" he said. I explained that I'd called him staff to fill them in on why I couldn't continue the infusions (first due to surgery and recovery, then due to incompatibility of the meds with blood-thinners) and he berated me for not keeping *all* the staff informed (while I'd called the scheduler, I guess I didn't tell the infusion coordinator).
Fast-forward to several months later. We had problems getting my meds delivered timely to their office. At my next appointment, he chided me for not having my meds there in time. I explained that I'd done my best, making at least 2 phone calls to the specialty pharmacy to make the delivery happen on time. "Well, we seem to consistently have problems with your order" he said. At that point I kind of melted down into tears, saying "I feel like a kid who's being scolded for doing something wrong when I make every effort to do my best to be here, on time, meeting my commitment to try these meds (oh yeah, and the receptionist once marked my chart "LATE!!!" with 3 underlines beneath the word because I was 10 minutes late to an appointment - and that's even after I called to say I was running late! After that, I just left my house earlier and didn't repeat that incident. That was at least a year ago.) Anyway, about the pharmacy and the meds - we switched to another specialty pharmacy. That seemed to solve the delivery problem - the new pharmacy is much more responsive and easy to deal with. All this occurred about 4 months ago.
Okay - so that brings me to today. After the last meds incident, (and my tearful melt-down), all the office staff, including my dr, started being extra-nice to me, which of course helped me feel better about what had happened before. The dr is on time 4 out of 5 times, but this morning he saw me an hour late. He entered the room without apology or explanation as to the delay. I asked him whether the office was running behind, and he got tense. "Why?" he wanted to know. "Well, I have a conference call in an hour and I won't be able to keep that apt" I said. I could see that he was unhappy that I'd called him on the delay, and then he threw in "oh, and my infusion coordinator is leaving, so you'll need to get your meds here without a reminder - we've had a problem getting them here on time." I explained that I don't wait for the reminders, that I haven't had a problem for months, and he said "I'm not here to get in an argument with you." WTF?
On the somewhat-minor list of annoyances - no cell phone reception or wi-fi in the building and rooms. This is less minor when I miss an important call or can't send an email message or text to work - especially when I'm delayed returning to the office (like today!) Apparently, several staff members have shared that patients would really appreciate this - for months. No movement from the dr. This suggests a general disconnect from patient's needs to me.
So - if you've read this far (thank you!) here are my questions:
1. Do you handle the ordering for your infusion meds, or do you get assistance from the dr's office?
2. If you do the ordering, are you allowed to take delivery of the meds? I can't bc my dr won't allow it and therefore I can't confirm delivery unless I call them.
3. If you get a monthly infusion, how are you able to get your meds delivered earlier than a few days before the next 30-day infusion appointment?
4. Despite his expertise, excellent reputation and our long-standing relationship, is it time for a "divorce"? I live in the LA area and there are plenty of doctors around. I already travel about 20 miles to get to his office and I don't mind driving a little further if it's once every 4 weeks.
Any input out there is welcome. I'm pretty rattled by this!
I do not do infusions, but changed meds, and I am sure I made 12-15 phone calls in about a week, trying to get things arranged. Specialty pharmacys are not fun, and my drugs are delivered to my house. Your Dr doesn't allow it? Who is paying for these drugs - him, or your insurance co, who you are paying the premiums for.
My drugs (injection) can't be ordered more than one week out, which drives me crazy. I want them 2 weeks early so I knows they are here for me.
I say, find a NEW RHEUM. Make an appt with him, then when he accepts you as a patient, have records transferred. I have to drive about 2 hours to my Rheum, I live in a rural area, there are none closer than that. He is part of a large clinic, one who has many specialists, located in a few different towns. My primary, my orthopedist, and my Rheum all are with the same clinic, so all of my records are there. It makes it easier.
Good luck.
@suera - I like the comment about how they all seem like "prescription writers" after a certain point. It does feel that way sometimes, and I don't think it's that my dr's not up-to-date - I know he is, but I think he tends to be skeptical of new methods and options. He'll let me try new things I suggest (injectible methotrexate, Vectra DA test, use of minocycline), but he doesn't suggest it - those changes were based on my own research, though to his credit he will write the rx's if I ask for them).
@altoclef - I like the "letter after the fact" idea. I also made sure I got contact details for the one person who I really like at the office - my infusion nurse, who's just the best - so I can find him at his other job (another medical office in the same town that also handles infusions, though I haven't checked out their rheumys).
@mttazzie - your story is the one thing that keeps me coming back. Do the positives (he lets me try new things even if I need to do the legwork up front, his infusion nurse rocks, the location is mostly convenient, his staff is competent) outweigh the negatives (well, you know). In your case, it sounds like patience paid off. I'm thinking "it's been three strikes, and they're OUT! ;-)
MKP1952 - I used to be able to take personal delivery of my injection meds too, but once I switched to infusion, the trouble began with ordering. Dr's office says that they don't want to accept responsibility for infusion meds not shipped to them in case of 1) failure to refrigerate properly and 2) tampering prior to arriving at the office. I guess their thought is - if we're putting it into your body ourselves, we want to control the care and handling of the med. Makes sense, but increases the level of complexity for me.
I'm beginning to think - if offices would modernize (accept email, have electronic records, provide wi-fi for their patients who may be stuck in their offices for up to 4 hours) it might be the solution to my problems, because they mainly revolve around the ordering procedures and staff communication. One email would have fixed the communications issue with my DVT/PE; one email would have communicated to my pharmacy *and* office staff that yes, I ordered my meds timely, and here's the date they're expected. If I live in a major metropolitan area and I don't experience that kind of progress, how long will it take for doctors to catch on throughout the country, and what's taking so long?
Thanks again, all, for letting me vent!
I get infusions and my doc handled all insurance precertifications, med ordering and receiving. All I do is show up.
It shouldn't be your problem looking after the bios. Whatever company is suppling my bio sends it to the hospital Pharmacy who then send it to the research clinic area where I receive it.
When I was receiving the Orencia infusions, a Nurse came to my home to give me the infusion which was much easier for me. At that time, the company would send the Orencia to my home by Fedex. So I could just unpack it, put it in the fridge and have it ready for the Nurse when she came over.
I'm glad that you have choice of other Rheumy's in your area. There are many good and pleasant ones out there. I presume that you would not be asking for a referral from your present Rheumy. Perhaps your GP? Or can you just phone another one up and ask for an appointment? Good Luck!
Lin