View Full Version : Have you ever JUST SAID NO to seeing your doctor?

07-24-2007, 02:36 PM
Ok, this feels like a confessional booth, but here goes....
As many of you know, I spent the last year being REALLY sick with Lupus and undergoing chemotherapy. At last, my numbers came down, and I'm on "maintenance dosage" now. I've been feeling pretty great. I had actually forgotten what that felt like.
So I have just been moving my life along, as we are meant to do. I get out of the house more and more, I've even done some traveling with my husband--THAT was awesome after being homebound for so long.
I ran out of Plaquenil, but didn't notice any difference, so I stopped taking it. I am still taking a minimal dosage of 5mg of Prednisone every other day, and still doing 2.5 mg of methotrexate each week. Still taking gabapentin for my leg. Still taking trazodone to help me sleep.
But I just let my doc appointments go by. I was feeling good and busy. The thing is, the longer you wait to go, the harder it is to go back. What if he does the blood tests and I'm not doing as well as I think I am?
When I called in on a refill, his office refused, so I sighed, said, ok, and called to make the appointment for tomorrow morning. I know he's going to bawl me out. Y'all can feel free to as well. What on earth is the matter with me that I do this?

07-24-2007, 02:47 PM
ive done it also, then managed to put myself into a major flare, i guess when your feelling halfway decent you just dont want to find out that your not doing as well a person thinks, but we just have to grit our teet and go see the dad gum doctors so that they can keep track of whats going on

good luck littlered, have fun at the doctors, they take all the rubber gloves out of the room when im there, because i tie all the fingers in knots and put them back in the box

does the sleepines were off with the neurontin (gabapentin )

07-24-2007, 07:28 PM
Littlered... Just try to remember how bad you felt when you were flaring... You could end up there again and not gradually. it can hit you all at once. Go to the doctor, he may leave your meds as they are since you are doing well. Sometimes we don't feel the difference when we quit taking a drug right away, it can take 6 or more weeks until it is completely out of your system. Then BAM!

07-25-2007, 07:22 PM
Geez, this is a timely post. I've been feeling soooo good, and have 'skipped' some meds (not intentionally, at first, but then.....) And I was considering blowing off my next doctors appointment. Now you've got me thinking....

I think you've made good points. It's not good to mess with the 'plan' - a flare is too big a risk, right?

Teriod, you are a riot....I love the rubber glove trick. Yes, the sleepiness wears off with the gabapentin (at least it did for me.)


07-25-2007, 08:13 PM

07-26-2007, 06:27 AM
I went yesterday morning to see him. He was a little concerned but told me it's understandable from time to time, but if I wanted to keep healthy, yada yada yada.
Ran more blood tests. Then took another test that shows I have significant CNS involvement. Something to do with moving/tracking objects and depth perception. Would anyone like to explain this to me? The implications, the treatment, etc?
Oh and he put me back on Plaquenil, because he says it helps with fatigue. I'm not fatigued now, but I have got a lot ahead of me, with substitute teaching this year planned. All other meds have stayed the same. Love, Kathy

07-26-2007, 07:43 PM
Hi Littlered,

Oh, how I can relate with your posts. Having spent over a year's time in and out of the hospital the last 18 months...I so completely can understand those feelings. I've had those few bright shining moments in life when I feel so good, I forget for just a moment that I have lupus.

I loved Teriod's rubber glove comment, that was hilarious.!!

About Gabapentin, I have extensive CNS, Brain, lung, and heart involvement. It is very very very important to keep your medication routine steady....especially gabapentin; as it takes time to build up a
resevoir in your body to keep the pain, (for me seizures) to a minimum. I have made the mistake before of feeling so good and thinking that if I cut back on meds, I'll be fine. Those flares throw me back in the hospital every time, and this last one was enough to scare me so that I never stop taking my meds.

I know it's a nuisance, a pain in the bazooka, etc., but my friend, what feels like a "just one day, it happened moment" which in reality is a build up of going without meds that really turns lupus in a flare that can take weeks and/or months to calm down again.

Out of love, and compassion; I want to encourage you to stay on your meds. Remember, it's the meds that are helping you feel so great. So many of us forget that (including me). Keep on your meds, so you can keep feeling good!!

With lots of love, I encourage you to stay on your routine of meds, lots of rest, minimal stress and remember how much you are loved.

Much love,

07-28-2007, 09:12 AM
Hi Kathy! So glad you are felling so much better.

I've been doing a bit of the same. I'm so much better now, the plaquenil isn't making that much of a difference, oops I missed my meds, oh well, etc. I've had some guilty feelings over it, like I don't care about my health all of the sudden when I worked so hard to get to where I am now.

Reading about others having the same feelings, it makes me see that it's just a recurrance of denial in me. I want to be ALL better, not partially better. It feels like I am on SO much less medication now, that it's not the focal point of my life, like it was for so long.........anyway, your posts make me feel (like always) in good company with my feelings!

I saw the docs yesterday, and I'm going to re-commit to timely taking my meds. I mean I KNOW BETTER, right? I really don't think the plaquenil does anything for me, but the Rheumy said there have been some studies showing that if you are taking plaquenil and get a flare, the flare is usually less than it would be if you hadn't been on it...........so I resigned my goal of getting off all meds.

07-30-2007, 04:06 PM
Hi Missy,

I'm certain that the universal "denial" feeling comes when we're dealing with lupus. We always think there will come a day when we won't have to keep the regimine of doctors, labs, medicine, etc. and etc. Don't you feel like maintaining the maintenance program is more work than anything else you do during the day? I sure do. It seems like I plan my day around my medications and doctor appointments.

But all in all, as my grandfather used to say "as long as I'm on this side of the dirt, I'm the happiest girl in the world" :D

Come out, come out wherever you are Littlered!!! We haven't heard from you in a while, I hope you are okay.

Much love,

07-30-2007, 08:44 PM
Love your grandpa's saying, Browneyedgirl............I've been doing better since I "re-committed." Sound like I'm married to my meds, well, sometimes it feels that way, huh?

07-30-2007, 09:22 PM

08-01-2007, 05:02 AM
Yeah, guess we all have to be thankful to be on 'this side of the dirt' (that's great...I'm gonna' use that one!!)

I have my labs today; doctor tomorrow...not going to 'skip out on it' even though I'd lovvvvvve to. Forgot my evening meds again day before yesterday, but none the worse for it. I know that I need my docs blessing before I can stop taking anything. Would be nice to be captain of my own ship for a while though.

Whine, whine, whine...I feel good and my symptoms are minimal. What in the world do I have to whine about!!!!

Hope you are all doing well - I keep many, many of you in my prayers.


08-04-2007, 01:50 AM
I'm glad it's not only me who skips medication from time to time. But I've been doing it for so long I can't remember.
Unlike most of you, I have not seen the downside of this yet. So naturally, I still can't get back on schedule. I'm supposed to be taking 5mg of prednisone along with the 2g of CellCept but truth is I stopped the prednisone months ago. My nephrologist doesn't know that. But I think the CellCept is doing its job perfectly. I think I'm afraid to start the prednisone again and start gaining weight and have that moon face I simply hate!! But think of it, if I've been doing great for months now without taking ALL meds as prescribed, doesn't that mean I don't need some of them anymore? Problem is I can't tell my doctor that. Last time I went for labs was a month ago. No significant problems, but he was a bit worried that one of the complement levels (either C3 or C4) was slightly low. I mean even the Adalat (for hypertension), I haven't swallowed a tablet of that in months. But my b.p. is normal.
How can you explain all that??
I guess the effects of that will show in my next labs, scheduled in about 3 weeks.
Sorry that was long!! Just found an opportunity to spill it all!!

08-05-2007, 04:41 AM
Wow, dandoon_88! True confessions, huh? I'm glad to hear you're doing OK without the meds. Everytime I miss a dose it's like waiting to get hit by lightening...like the 'medication gods' are going to get me! My doc only did my LFT to be sure the Imuran wasn't doing a number on my liver again. Don't get all my lupus meds for another three weeks or so. Then "we'll see" (she says.) When I pushed her on reducing meds she said "wait a moment...you've been very, very sick this past year...give it time." Feels like a LOT of time has passed already, but I suppose I'll be the good girl and wait it out. Down to 7mg prednisone next week - 1 mg a month reduction she tells me. Grrrrrr.

Any other 'bad boys and girls' out there who skip their meds? What happens when you do? Not that I'm prying...just curious!


08-05-2007, 06:13 AM
skipping meds----that aint gonna happen, I just took my meds wrong on friday morning, and had some kind of seizure friday night, for some people its too touch and go to miss meds

08-05-2007, 08:13 AM
Sorry to hear that, Teriod. Yeah, for some it's just not in the cards. When I get my lupus blood work done, I'll be anxious to hear the verdict - until then I'm staying on the straight and narrow, medication-wise. No more Russian roulette! Hope you're doing OK now, Teriod.


08-05-2007, 08:09 PM
im ok now

08-06-2007, 10:58 AM
Glad to hear you're ok, Teriod.

I think it was easier to remember to take all my meds all the time when I was on more meds. Now, I'm down to Lisinopril and Plaquenil only, and it just seems like so little compared to what I was on, that it's almost forgettable. I do make sure to tell my docs what I'm doing/want to do. In case something happens to me (like hospitalization), I want them to know what they'll need to give me.

Dandoon - I felt like you do at times. I think the Cellcept was the main source of my improvements in health, but of course the docs wanted to keep me on the other meds a bit longer, just in case. I've been off prednisone for a long time now (I keep some around for illnesses and emergencies on my doctors approval), but I remember when I first wanted to go off of it all together, my Rheumy told me I should be happy to have it down to 5 mg a day. He humored me, though, saying that everyone should have a chance to try to get off of it! And it worked for me. But, everyone is different. I just knew that the Cellcept was what was making the big difference.

08-13-2007, 09:02 PM
Hi Jody,

I am new to this forum and it has been really great reading the posts of people going through the same problems I am (that sounds really bad doesn't it?). This year for some reason I am particularly resentful about taking my meds. It's been a long time since my last remission and a long time since I've felt remotely good. I skip my plaquenil fairly often and truthfully have been off of it for about a month now. I too don't think it really does anything significant for me. I skip other meds too occasionally, but those seem to have an immediate backlash so I am usually forced back into towing the line. It seems that I have developed this sort of small self-destructive streak I think as a way of having some control over my life.