Hello everyone. Rainy day in Northern California so perfect for a nap.
I’ve posted before about problems getting in touch with my rheumy and having him call me back. Like most practices today I guess, I have to go through an assistant who relays the message to him and then calls me back with his response. I’m Having trouble with communicating with her. She is always short and snippy and I get flummoxed trying to make my point that my questions merit a call from the doctor.
Before this tooth abcess appeared, the rheumy at this point (one week ago), wanted me to reduce from 40 to 30 mg and then stay there for a month until our next appointment. I didn’t reduce because I was having more symptoms and trying to figure out if it was a GCA flare or just pred side effects, and wanted blood test results before reducing. I got them Monday and CPR hasn’t changed in a month. Sed rate went up from 11 to 13.
So his assistant called me back today, and said the tooth infection had nothing to do with the GCA, said he had reviewed my labs and they were “perfect”, read me his notes on reducing, told me this is what he (still??) wants and that it would in fact help heal the tooth as pred inhibits healing.
I told her I was reluctant to do that until my face swelling and pain resolved a bit with the amoxicillin and I saw the endodontist tommorrow to see what needs to be done, so I could tell what any new symptoms might mean.
Conclusion: “ I’ll tell the doctor you don’t want to reduce then”. Am I now a non-compliant patient? Don’t I deserve a talk with the actual doctor about this? I don’t call him that often! And would reducing now help heal the infection or just confuse things.
Thank you for any thoughts.
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Mstiles
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Oh Mstiles, if they could just see themselves as others see them! We ought to have a wall of shame on here as well as a roll of honour for bad and good medical experiences.
What are you going to do, stick with your gut instinct, or be cowed by the Rottweiler?
Rheumys are scarce where I am, but I think I will start looking. Especially since I’ve learned on this wonderful site that PMR/GCA is not a quick and simple thing to treat.
Does it matter if you have to travel a bit? You aren't getting to see him - just phone and email contact. I'm sure there are a few better options in California - why not put up a post asking?
I live in California, but Southern California, and I agree-- not many doctors that know how to treat PMR down here. It seems as if they are just learning and experimenting with patients
Your question about the pred dose. I think you will get some guidance from the endodontist. It's possible your inflammation markers have increased because of the tooth issue so it seems sensible not to taper the pred until, as you said, the antibiotics have started to work. I find it deplorable that the assistant can so rephrase your words as to make you sound "non compliant" when what you want is acknowledgement that you are dealing with another health problem just now, which you hope will be resolved sooner rather than later, at which point your taper plan can be sensibly reassessed.
I have Kaiser Permanente and find it just as effective to send my GP an email. I have their ap on my iPhone and can order meds, set appts and email all of the doctors that I have seen in their company.
I have Kaiser, (Group Health for years prior) and have been very pleased. If it's something pressing, there's also the consulting nurse service, 24/7 . I've had serious and expensive problems for several years and I've never felt I was waiting in line or being offered other than what seems the best course at the time.
It was my Primary Care doc that picked up on my PMR. The pain in my arms and shoulders made simple things like flipping a light switch or turning over in bed very painful. It had come on so gradually, it had become background and I never mentioned it. I thought I just needed more exercise. Doc had me in for a general review, nothing particular and toward the end I mentioned that I was pretty pathetic when I first got out of bed in the morning and that my thighs had been constantly aching a little. He had a blood draw and later that day I got an email from him about PMR and a prescription for pred. I felt better in a day! I could have gone on for years with that pain and worse. Great catch!
Great care and it seems to be getting better. Since Kaiser and GHC merged I've noticed the the waiting rooms in the clinic and pharmacy are mostly empty. Not because of fewer patients, but because patients are being seen on time.
Mstiles, you definitely deserve someone more sensitive and sympathetic. Apparently everyone who takes steroids has a different reaction to it. It is very individual. I think you should stand up for yourself and try not to be intimidated. It is not their job to put you down or make you feel like a “nuisance.” Remember the squeaky wheel and keep pushing. Sounds like they should NOT be in that job. Be clear and pushy about what you want the assistant to relay to the doctor. “No that is not what I said” etc. etc.
My reply to snippy assistants: "Listen, I get paid a lot of money to take crap from important people. I don't take crap from the likes of you for free, much less pay your boss for the privilege."
Can you call and ask for an office manager? Tell them you think the assistant misunderstood and it's important to speak directly to the doctor.
I drive an hour and a half to see my doctor. I make it a day out for me and do what I want, not what I should. I only go every three months. One time I went to a fun bookstore, another time I came home and napped. I try to time the appointment so I don't get stuck in traffic.
I went with a doctor from a very well known teaching hospital. Seems to have worked for me. Is there one that's in reach?
My experience was reducing after a jaw bone-infection with 2 abscessed molars was a huge mistake. It sent me into a horrible flare. I reduced much more drastically, 50 mg, 75 mg for the extraction, then 15 mg for a week, then 12.5...way too fast! I wish I had waited until things healed before sending my body into chaos. But, my rheumatologist kept insisting I get off prednisone.
I don’t care if I am non-compliant, it’s your body. There’s a difference between deliberately doing things that negatively effect your health (eg diabetics who don’t monitor their sugars), and having sound reasons and explaining your rationale (disagreeing).
I am on a new strategy, I tell them what I want to do. I understand though 40 mg is a high dose and you may not want to be on it too long. Good luck.
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