View Full Version : My Lupus Education today...

02-25-2009, 03:43 PM
Here is the lesson learned today from my Rheumatologist. Essentially if you have Lupus, you have Lupus. If there is no organ involvement, it's not a flare and certainly not a flare they do much more than Plaquenil for.

If you don't have organ involvement, then you just need to learn how to cope with the fact that you have a non-curable, chronic illness. You must not be defined by the disease and rise up and accept that you don't feel great and go on.

Further, they don't treat non-organ involved Lupus. Certainly not with Imuran or other cytoxic medicine. They treat symptoms, so it doesn't matter what your experiencing as far as whether you have lupus or not.

I need to go to Lupus support groups, so I can see how sick the really sick are...that will essentially make me feel better about how I'm feeling.

Next, with lupus, the number one killer (especially of men) is depression. Number 2 is heart issues.

It was an interesting appointment.

02-25-2009, 04:07 PM
Good lesson, Larz.

I look at lupus as a condition, not a disease. A disease says I'm not "at ease" with myself. Lupus is a part of me, but I am not lupus. I live life a bit slower than I did at 35. But then, I probably would even without lupus being part of my life. And a little slower means I can sit back and enjoy the garden - even with the weeds.

It is a transition, an acceptance, a new outlook. And I'm thankful for this community, where I've learned so much about myself, my condition. And where the strength and sharing is so very strong. Together we are so much more than each of us alone.

Hugs, Larz, I'm glad you're part of our lives here.

02-25-2009, 05:16 PM
Wow...that's a gem of a rheumy there. The useless seem to be everywhere, while the good ones seem to be few and far between. I found one a couple of years ago when I had to switch rheumy's due to insurance issues. She was questioning my pain level now, the fact that I had full mobility and seemed clueless to the fact of what medically controlled actually means to a lupie. She treated me like a drug seeker who faked her diagnoses (like we do it for fun) and refused to give me copies of my labwork when I walked out because "she doesn't like it when patients call her with questions". I reported her to my medical group and found a new rheumy ASAP. I nicely informed the office assitants that refused to give me my labwork why I would never step foot back in the office LOUDLY in front of all the people waiting to be seen. I turned and told them if they want someone to actually care for their health, they need to take their services elsewhere. Oh btw..the only medication I'm on is Plaquneil..you know the one ALL the druggies sell on the street. ::rolls eyes::


02-25-2009, 07:17 PM
What a gem is right?! If it were me, I'd be on the phone with my health group in a New York minute!

When I was first diagnosed I had a doctor I really did not like. And even though he was the only one in my medical group, they got me another one when I explained how patronizing and uncompassionate he was.

Good luck -

02-26-2009, 06:10 AM
It's really funny to read the reactions. Two people think that the Rheumy was right on, two think that she was awful. I'll be honest, I am on the awful side and am intrigued by those who thing it was something good. The whole appointment started when I came in, I wrote a synopsis of what was going on. Why, because I get forgetful (especially in a flare) and I always feel stupid when I rapid fire my responses out. I had my wife read it on the way in (she came with because she is frustrated too) and thought it was good.

The appointment came in with the doctor carrying the note (unread) and said it was too long to read. If she won't take the time to read it, when does she have the time to listen to me. This really got my wife angry. She then said essentially that there is no sign that I have a lupus flare going on. In fact, my complements were "high" and they are low with lupus patients. Also, my sed-rate was low and I didn't have a positive ANA. The fact that my anti DNA test was high was irrelevant and what I was experience as far as fatigue, sore joints etc. was just evidence that I have lupus...lupus is chronic so I should expect to feel crappy to a certain extent all the time.

My wife got more and more angry and started getting sarcastic with the doctor. It was ugly and I just wanted to get out of there. She then went on to tell me that suicide was the number one killer of lupus patients. Nice. Let's drop that in my head. Maybe because of having poor care provided.

She also told me that as a "specialist" she shouldn't have to be dealing with some of the things bothering me. I need to see my primary. My primary thinks my lupus is flaring and sent me to her! I told her that. She then started punching orders up. I need to lose weight, I should go to infectious disease (because antibiotics always give me a pick-me-up). If I want ANOTHER opinion, I could go to the University. It was just awful.

I'm feeling down today. Do I have to accept that I'll never feel better unless I get organ failure. Do you have to have a heart attack or stroke or have my kidney's fail before I can get treatment that knocks me into remission? I fight through every day of work, hoping that tomorrow will be a better day.

So, to those that see how awful she was, thanks. For those who thought she was great, boy, I don't know. I'm sorry I wrote it in such a way that indicated it was good. Right now I have a wife that's down on me and a lack of direction (other than lose weight and take vitamin D).


02-26-2009, 08:01 AM
Agggggggg, you are living my nightmare! That is just exactly how I am hoping my appt coming next week will NOT go, and very afraid it will. My rheumy is very non-comunicative, and dismissive of my complaints. Granted, I am not so debilitated that I am not able to walk into the appointment, and I have not had any major organ involvement diagnosed so far ( thank goodness ). But, am I just supposed to accept that I wake up EVERY morning in pain, then have to get out of bed and walk on feet that hurt so bad that I have to hold onto the bed just to take some of the pressure off of them. Yes, I have told him this, but the fact that if I keep moving the pain does get better(not go away), seems to negate the fact that I had pain at all. Am I supposed to accept the fact that I am short of breath almost all of the time, to the point that if I walk up the stairs, I start to wheeze. "Go see your asthma doctor" - I did, she says it is not my asthma, she thinks it is the lupus. Am I supposed to accept the afternoon headaches 3-4 times a week. Should I ignor the mouth sores? Is it OK that I am so fatigued most of the time, that I get done the day to day required things, but do not do and of the 'fun' stuff I used to enjoy doing. My spouse, like yours, is very unhappy with the way my rheumy has treated (or should I say NOT treated ) me. He will be coming to my appointment with me. I also wrote a list of the the stuff that I have been experiencing so that I don't forget them and am better able to communicate with the MD. I also called his nurse earlier this week to see if he wanted any lab work done before he sees me and to let him know I want to discuss some new treatment options. I am hoping for better, but in my mind's eye I see him telling me that 'you have lupus and you will just have to live with it' or ' go see (insert other doctor here)' and come back and see me in 4 months. which I interpret as "I am too important to really pay any attention to you, but am happy to charge you for being here"
I am not saying that I am expecting a cure. I do not expect to be able to run around like a 10 year old. I don't expect to never have a crappy day. But it would be nice if every day was not crappy. It would be nice to be able to move well enough that I could lose weight. And it is really frustrating to be trying to be proactive about my health by writing stuff down so I can be intelligent and accurate when asked what is going on with me, then be dismissed as if I have no idea what I am talking about. So, what am I supposed to do, ignor all my symptoms until I am on my deathbed? Is it so unreasonable to expect SOME quality of life? I realize this is a chronic disease and 'I have to learn to live with it'. I refuse to believe that that means I need to 'shut up and deal with it'. As far as lupus support groups are concered, I seriously doubt that the point of going to a support group is so that you can see how much worse than you everyone else is.

Well, if nothing else your experience has fired me up. I have already promised my husband I will find another rheumy to get another opinion about my treatment, but I am keeping my appt with my current MD and keeping my fingers crossed that it is not a repeat of your experience. Maybe that lupus support group is not a bad suggestion. Perhaps someone there could reccomend a doctor who is actually willing to listen to you and treat you.

Wishing you better days!


02-26-2009, 11:38 AM

Don't try to get too down. Like I said before there is alot of doctors out there that tell us all the same thing. We are depressed, need to lose weight, etc. They refuse to actually look for something wrong with you, it's easier to brush things off and tell you to go somewhere else. If she can't be bothered to even look at the list of symptoms you brought with you, she isn't worth your time. I'm not sure how many rheumy's you have in your area, but I would ask my primary to refer me to another one. I had a great pediatriction that diagnosed me when I was first sick, but my experience with female doctors has gone downhill from there. Not that I'm saying all my male doctors have been good, but I find they tend to listen more to you and not brush stuff off. I'm not sure if you have tried them yet, but I found when I was sick Aleve is a great anti-inflamatory. I used to get NSAID's prescribed to me but it ended up being cheaper to buy the bigger bottle of Aleve over the counter. Might help a little with your pain and inflamation until you can find a real doctor. Good luck, we are here for you.


BTW - I wouldn't be so hard on the others who didn't get it at first, I'm great with sarcasm. :)

02-26-2009, 12:46 PM
She sounds like a specialist who doesn't want to work! So, basically she was telling you that you are going to feel crappy all of the time because you have Lupus and that you were not to bother her with your crappy feelings because she was not going to treat them. That you needed to wait until one of more of your organs shut down before you called her for treatment. All in all...she sounds like an inept doctor who wants to get paid, but doesn't want to keep her Hippocratic oath!
I am right there with your wife...I know that I would not have been able to keep my mouth shut either and that doctor would have known exactly what I thought of her. You are also right that if she didn't have time to read your list, she certainly was not going to devote any time to listening to you and she'd much rather just dismiss you.
Can you request another specialist? I mean, I can understand that her caseload may be filled with individuals who are suffering greatly from auto-immune diseases that may be crippling them or destroying their organs. But, that does not mean that your pain, fatigue, and other symptoms should be pushed under the table as irrelevant! Her job is to treat EVERYONE under her care with the same concern, compassion, and diligence. If she does not want to do that, then you might be better served finding someone else who does. And don't forget to let her know exactly why you refuse to be treated (or not treated as the case is) by her.

Peace and Blessings

02-26-2009, 02:42 PM
Thanks everyone. I probably didn't elaborate enough on the appointment for others to know how really ugly that appointment got. I'm not sure about the whole "Compliments" thing and that they fall rather than go up with Lupus patients. My C4 Compliment is high. My Anti DNA is up, but she says that ANA Negative (while my other Rheumy has seen my tests as recent at December be positive. My Sed Rate was "high" but she said that it's within norm for my age..?

She believes in "holistic" treatment and as I'm Vitamin D deficient, she wants to see me get that up there by taking 2000mg per day. Then she mentions fishoils. This is about the time my wife blows up and says, "yes honey, let's go take the fishoils and they will make everything better." To which the doctor responds that this is no place for sarcasm and that if she wants to be sarcastic, she should not come to the appointment. I think it was about there that my wife got up and said that she would be in the waiting room....

The whole "suidcide being the leading cause of death among male lupus patients (women deal with it better)" was the next thing she hit me with and wanted to know if I wanted antidepressants because it doesn't look like I'm getting much support at home.

Then notices I have an ear infection (I'm like catching everything that comes along these days and they turn into secondary infections...I've been on more antibiotics in the last three months than any year period of my life to this point). Then asks me if I want to go to the University for "yet another opinion" (she knows I was there for a second opinion).

Like I said, it was ugly and sad. When I went to get my antibiotic prescription, low and behold, there is a prescription for Imuran??? What the heck? I didn't know what to make of that....I wouldn't think a doctor would give a prescription of something like that to someone if they really didn't feel they needed it. Perplexing.

Thanks for all your well wishes!

02-26-2009, 03:00 PM
hi larzz

I was so glad to see your response qualifying your post. I was questioning my own resading skills because i thought your dr. was deplorable at that visit. Has your rheumy tried a medrol injection. I got one a few months ago during a terrible flare, and I got relief and continue to feel better than i did. They use the medrol injection both as a treatment and a diagnostic tool. Other diseases do not respond positively like lupus does. \

Anyway, i thought i would throw this idea out....maybe even your pcp could give you the injection. So sorry you had such a bad experience. I am glad that your wife was with you so that you at least don't question your own sanity. By the way....I don't see suicide as an option....what a dummie dr.

sick n tired
02-27-2009, 11:11 PM

I suggest you jettison this idiot. She is a lazy *#@#* It really irks me when there so many insensitive jerks. Do they have a measuring stick in medical school and they stick the majority or the male and female pr1cks in Rheumatology?
Why doesn't your general care physician just treat you. That may be a good option if you can convince her. She at least doesn't think you are making something up or all in your head.

sick n tired
02-28-2009, 11:02 PM
Hey Larz,

One thing your rheumy said I found interesting...my doc calls the dsDNA a Lupus marker...if mine is high and I am having symptoms he is concerned. Your doc is full of prunes...also why would you be put on Imuran if you don't have some organ involvement or at least something that is not all in your head.

Find another doc...this one is a jerk...I loved the crack about your wife not supporting you. What a dip...Her reaction is just what I would have done if that were my hubby.

Angel Oliver
03-01-2009, 08:33 AM
Angel just reads this post and begins to bend over and shows her butt to this insensitive doctor...........close your eyes everyone....it's not a pleasant sight :)

I hope you find a caring Doctor soon.xxxx