View Full Version : A Question about what to say to my doctor...

12-19-2006, 09:02 AM
I am seeing an Internal Medicine doctor who I believe is very good, very knowlegable about Lupus and, when I see him, really listens to me and is open to suggestions from me...

The only (BIG) problem is: when I call his office for a refill on ANYthing, I get ignored. If I make enough fuss, they will set up an appointment with him, but sometimes I don't need to SEE him, I just need a goshdarn refill. I am not talking about PAIN meds here (though that has happened) but I ran out of Prednisone and they told me the same thing! I have an appointment with him at 2:00 today. Please tell me how I should talk to him about this problem. I have a hunch that they want whatever the insurance will pay them for an office visit, so that's why they do this.

I could understand their insistence on pain meds, but PREDNISONE? NObody sells those on the street! He KNOWS I have Lupus, why does he insist on seeing me for a refill of Prednisone?????


12-19-2006, 10:40 AM
What I don't understand is why he isn't giving you enough refills in the prescription to get you through to a regularly scheduled check up? That is what my doctors do. If I need to call for a refill, then it is time for a check up. When I leave my doctor's office, he tells me, "I'll see you in 8 weeks", and he writes enough refills on the prescription slip for that time period. When I leave the office, I make the appointment for the next visit. About the time I go see him, I need him to write a new script. I guess you should ask him if you could do that. I guess it depends on how often he feels he needs to see you. Is he trying to taper or wean you from the prednisone? Is there some special need that he feels you have? I think those are the questions you need to be asking.

Just my opinion. Good luck!

12-19-2006, 11:28 AM
Jeez, my rheumie writes my prednisone and other things I take regularly for a year's refill on every scrip - the only things I have to get monthly refills on are pain meds, which my PCP prescribes anyway. And even then the pharmacist calls in for the refill and they fax it to his office. Of course my rheumie is the only one in a four county area so he's booked solid for weeks _ I have my regular appt. every three months, and the rest of the time I e-mail him if I need to up or down my meds. I suspect the problem may be more with your doctor's staff - the doctor may not even be aware this is happening. So definitely talk to him - if this is his policy he should explain why - if it's his office staff, he needs to fix the problem.

12-19-2006, 05:20 PM
apparently, he explained, it was partly his staff's fault...they did not tell him it was PREDNISONE that I was requesting...
He also mentioned the frequency of my visits to him. So far, I have visited for:

1. follow up on my stay in hospital (initial visit)
2. concern about my kidney
3. Onset of cold weather brought severe pain in my leg
4. follow up on kidney
5. therapy for back muscles (I messed them up due to pain in my leg.)
6. Today's visit...re: prednisone and concerns about my urine (it's been strange in color, frequency, and foamy...and I have severe swelling of ankles and legs. (oh...and I already had visit scheduled for therapy followup.)

It made me feel like a hypochondriac or something! I asked him for specific reasons WHY I should go to see him, and he said, "Well, if you're concerned about any health reason, you should come to see me."
?????????????????????????????????????????????????? ???????????????????

ALSO I am confused....

After urinalysis, he determined that there was blood present and protein present in my urine. He said the blood could be "normal" because of my menstrual periods (I reminded him I haven't had a period in YEARS.) He also said a small amount of protein could also be expected.

NOW I AM confused. :? Should blood be present and protein? He mentioned a high-meat diet (which I don't think I have...meat maybe once daily.) When I mentioned the swelling in my ankles/legs, he said, "well, prednisone will do that." Remember, folks, I've been on DEcreased prednisone, and have even been out of it for a few days.

sigh, I guess I just don't get it. More blood tests today to determine if I am back in flare, as my face is red and I have that "yuck" feeling, additional to the arthritis in my ankle.

Somebody tell me what is going on.....

*I* think I have had pretty good reasons for wanting to visit him.

12-19-2006, 06:00 PM
Red, have you asked about a referral to a nephrologist (kidney specialist)? Because this doctor doesn't seem to be taking you seriously. All the things you're describing, foamy-looking urine, swelling of the feet, face, and ankles, the fatigue - they are also consistent with having too much protein in your urine. A small amount of protein is normal (less than 150 mg.) but anything more than that needs to be checked out. And a small amount wouldn't cause the symptoms you are having. Although this could be caused by something minor like a bladder infection - any type of potential kidney problem in a lupus patient needs to be evaluated because we are at high risk for kidney problems. If you habitually eat your meat rare, it can cause both blood and protein to appear in your urine - the test doesn't distinguish between human proteins and animal proteins. And some medicines can cause a false-positive protein reading on a urine dipstick test, But your doctor doesn't know that it's something innocuous like that - so he needs to find out before making assumptions. It sounds like he may be getting impatient with treating your illness, which is not a good development. Fair or not, most doctors prefer patients they can "cure" and most of them don't deal well with patients who have chronic conditions like lupus, with multiple medical problems. And doctors who get impatient often get careless and practice bad medicine. If you like this doctor and want to stay with him, it might be time for a little assertiveness - tell him up front how he is making you feel. If you don't like him, or think he's shortchanging your very valid medical concerns, then a change might be a good idea. But in any case, you probably need that referral to a kidney specialist just to be safe.

12-20-2006, 03:04 PM
I took my hubby along for the visit yesterday...Now HE thinks I "want to be sick." :mad:
I will ask for a referral to a nephrologist.

I have had it up to HERE with doctors and their patronizing, dismissive ways. I mean, THESE are the people who make SO MUCH MONEY????

A pox on all bad doctors. :twisted:

12-20-2006, 03:25 PM
It sounds like your husband and your doctor are living back in the dark ages when "doctors" thought that taking out a woman's uterus would cure "hysteria" (which is where the term hysterectomy comes from in the first place). Coming from a husband that attitude is incredibly hurtful -coming from a doctor it's downright dangerous. Maybe it's time to share the "spoon theory" with your husband so he knows what it's really like for you to live with lupus. I'm not sure what you do to educate your doctor.

12-20-2006, 06:59 PM
I'm with MaryCain - your pee sounds like my pee before I was dx with Lupus Nephritis.

Better safe than sorry......however, even an internist and a rheumy should be able to order some kidney labs - it doesn't take much to figure out if something is wrong or not.

01-01-2007, 01:51 PM
Well, I now have a referral to a nephrologist, after the holidays. AND apparently he listened regarding refills, because all I had to do was call and *BOOM* they were refilled immediately. I do think a major part of it was his staff. A few of them are nice people, but some of them have such a dismissive attitude. Makes me want to slap them and blame the prednisone. :twisted:
Hubby is ok. He has seen me sick enough in flare to know that NO one "wants" to be sick this way. He doesn't go back to work til the 4th. Oh---his science teacher quit over the holidays, so I will probably be subbing until he can hire another. Do I LIKE science??? No. Can I TEACH it??? Heck yes! I am, however, a little nervous about teaching with my bald head with these kids. These are tough kids...kids who have been ejected for one reason or another out of regular public high schools and this is their last chance to earn credits to graduate. I have handled tough kids before(In fact, I like the tough ones the best), but not BALD. Any advice?

01-01-2007, 03:49 PM
Littlered -

I'm so glad to hear that you will be seeing a kidney doc - I hope all goes well.

Good luck with the teaching - sounds like my own personal hell, but I admire you for being able to do it. Tough teenagers and science......a double whammy! Take care of yourself.......and maybe your bald head will kill them with curiosity?

01-01-2007, 06:41 PM
Kathy, I'd beat 'em to the punch. Find a couple of the best 'bald jokes' you can find (use the Internet) and open your class with those jokes. Gets the topic out in the open and that's gotta' be better than having them whispering about it. Besides, you look soooo great bald, I can't imagine anyone not seeing that 'bald is beautiful.'

01-02-2007, 11:35 AM
thank you....I think I will draw an eye in makeup on the back of my head, under my coolest beret. Then, as I face the board, if I hear any movement, without turning around, I will whip off the beret and point to the class and say, "HEY! I SAW THAT! SIDDOWN!" Most of them will gasp or laugh, then I'll turn around, sit on my desk and say, "Ok. Let's get some things out of the way. First of all, YES, I am bald. YES, I have a disease called Lupus, and YES, my hair will come back. NO, you can't catch the disease from me. Questions, anyone?" If they ask questions, I will answer them honestly (hopefully they'll learn a little about Lupus) and then I'll tell them, "We all have the same goal here....to get you to graduation. We have to get past science, and it's NOT my favorite subject either, but we'll get past it. I graduated cum laude NOT because I was the smartest but because I knew how to beat the tests without cheating. And I'll teach YOU...if you'll treat me with the care and respect I treat YOU with. Fair enough?" These kids are street smart. You can't trick em or use the normal razzle-dazzle, so I think honesty is best.
Wish me luck. Science teachers are so hard to find, we may well be together for a month or two.

01-02-2007, 11:37 AM
wow....it changed it from "c*um laude" to "cream soda laude"....LOL!
Actually, it was closer to "Thanks, oh Lawd!"

01-03-2007, 11:46 AM
I think that's a great idea! Those kids are lucky to have you!