View Full Version : NEWcomer-when is the right time to go to the Emergency Room?

07-31-2005, 10:51 PM
New to this and am overwhelmed with the posts.
I don't know where to start.
or stop - - for that matter.

Unfortunately I finally figured out this is what i have....I have been battling doctors and misdiagnosis' for 4 years now.

Am 100% convinced it is Lupus
. Relief in finally being able to stop LOOKING and testing........is grand.

On all the drugs you all are talking about......"cytoxan" ( what is this briefly) and the "cellcept" ( this too?) are these the ones that everyone has had success with?
It would take me days to siphen through all the info here....and i am not doing well at all.......
so am wondering if someone wouldn't mind breifly summarizing what i should look for and a what i should "look-OUT" for too.....
I'd like to know from the "patients point of view" before I go into to see the doctors....
as doctors give you things for weird reasons sometimes.
my main problems now are severe chest pain and breathing difficulties
I am positive i have pleurisy......and both my legs are swollen the size of watermelons.....I am not overweight ...but am swollen more than when i was pregnant........!!
I would bet a whole lot of money i have kidney disease....or whatever its called...
is that something I should be concerned about?
I don't have my Rheumotologist appt. for 2 weeks....and don't feel like i can make it that long....
I have wanted to go to the ER every day for the past week........I feel so miserable...I cannot stand as my legs get so swollen...

can someone tell me when is it reccomended to need to go to the ER?.....

as for all the other symptoms i have had them for years.... and was told i had pancreatic disease.........

and thanks for it....
blue skies,

08-01-2005, 04:40 AM
Oh dear Dakota! you are in a difficult spot at the moment!

We aren't doctors here, we cannot diagnose. Nor can we definitively say when is the right time to go to the ER. So many things factor into that decision - comfort/pain level, how far off from your "norm" you are, and so on. We can't know htat. I've known people to go to the ER needlessly, using it as an outpatinet clinic. I've also known people who waited too long, and did not have good outcomes because of it. That is a decision you need to make.

I'm not an expert on meds, I'm only on plaquenil, a mainstay for those with lupus. Read through a few of the recent posts on meds, you should glean some information there.

I'd suggest a visit to WebMD, lupus.org and to the other sites bookmarked on this board -- they'll give you some good information and insight.

Hugs dear, and welcome.

08-01-2005, 11:26 AM
Dakota, hatlady had some great advice for you and I'm not sure I can add musch to it. I'm sorry you're having so many problems. Since your rheumy appointment isn't for 2 weeks and you are having so many problems, maybe you could see your family doc or go to an outpatient clinic especially if you are worried about kidney problems. I don't think you want to put something that xould be serious off too long. Any doctor you go to can run some tests for your kidney function. Take care and I hope you get some relief. Keep us posted on what you find out.

08-02-2005, 02:00 AM
boy after reading a lot more....
there sure isn't a whole lot of very encouraging news here.........
has anyone ever beat this disease???
Is there a "Lance Armstrong" of Lupus?
I was a professional ahtlete for 25 years...this is sure the opposite end of the spectrum for me......

I'm worried about the sounds of all the med's everyone uses...I am so sensitive to medicines...I am a redhead and have been told that is the reason....( who knows !!)

The Cellcept and Plaquenil...are considered what type of medications? ( please use laymans terms, I don't get the other ones yet...) please...

how frequent is dialysis done? Is that a proper treatment for this as I read somewhere although I don't see any posts for it here........??

all help is much appreciated....I am very glad I found this forum....so I don't feel alone.....
thank you,

08-03-2005, 04:14 AM
You're not alone Dakota, we're all on this road together. It isn't all bumps and hills, though.

Many of us live with and THRIVE with lupus for years. THere are people on this board and another board I post to that have had this condition for 20 years or more. They've married, had children, had careers, in spite of the uncertainty of living every day. Remember, lupus may add a layer of uncertainty, but just getting out of bed every day is a risk. We have a reminder that each day is precious, that we should treasure the color of the sky just before sunrise. That a yellow swallowtail butterfly on a purple coneflower is something to be watched, not passed by.

Not all the news about lupus is bad. Many go into remission or have their symptoms controlled for many many years. I don't know that anyone is every "cured" - but remission seems about the same as a cure to me. There are also advances all the time that speak to some of the worst things that can go wrong with lupus. It isn't a hopeless slide into illness, it is a road we can walk and live productively.

Dialysis is for those who have kidney involvement, how often and what type dialysis probably depends on the involvement levels. It is not a given for all lupus patients.

Meds? I'm on plaquenil and have used assorted pain meds over time. Your rheumy will work with you. Knowing you're a redhead, she/he'll adjust -- you ARE more sensitive! Back before celebrex was on the "BAD" list, I was on it for a bit. Switched after 3 weeks, as it did nothing. But it was an attempt by my doc to find the least problematic med to control pain. Now I take tylenol arthritis from time to time, and manage pain by massage, and other therapies - fish oil capsules, turmeric, flax seed - things my doc doesn't have a problem with, but that are homeopathic in nature. They aren't as quick as tylenol, but over time they add up to lowered pain and better overall health.

Hugs, Dakota, and know that your fear is OK. We've all been there, and probably revisited that stage regularly over the years. But also know that there is a sunrise, actually I just watched one here, and that living with a condition like lupus is actually a gift. It makes you realize the specialness of those around you, and of the miracle of each new day.

10-26-2005, 11:17 AM
Hi Dakota

I'm so sorry your having a rough time with this, but I've learned since my diagnosis staying calm is a really good thing to do on a daily basis. When I was first diagnosed I used to freak out easy any little thing that I would feel or hear would put me into a vortex of emotions. But now that I"ve had it for a bit I'm doing better. I've learned that staying calm is the best thing because stress can cause a flare up and your trying to reduce that now. My advice would be to talk to your doc about meds i'm on prednsoine which is a cortical-steriod and that's a fancy word for anti-inflamitory. As for going to the ER that really depends on you, you know how you feel on a daily basis, I usually look for red flags in my symptoms before treking off to the ER,

like changes in my urine, or bowel movements,
Increased pain (other then my ordinary pain)
unusual rashes
really bad chest pain and or shortness of breath
ect... and really only you truly know your body so when you feel like it's just to much then you go to the ER.

I know being diagnosed is hard especially after having the run around for four years, but hang in there it really does get better and who knows maybe they'll come out with a cure and we'll all beat this!!!!!!!

hang in there and stay positive!