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Sandra
05-24-2009, 06:59 AM
Hello everyone I am new to all this, I am not new to symptoms but i never knew what it was before, now since I have been reading your posts I am well aware.
I started into a flare a few weeks ago, I had no idea that this is how a real flare starts, the puffy eyes, aching hands and brain fog....today I am a mess I hurt so bad everywhere, I can hardly move, my kidney's hurt and I'm having a terrible time with my lungs and throat.
So from what I gather I am supposed to go to my dr to stop the flare?
These symptoms have been happening off and on this way for years, but in the last two years the flares as i called them are much more significant and can last for months.
But my family practitioner was an irresponsible and abusive man who has a practice I am sure just to pay for further schooling, his new home and the perks (thousands of dollars) to join our healthcare. You see here there just are not nearly enough drs and we get care at the local ER where we go an wait with all the other people without dr'sfor 6 to 8 hours at a time just to se a ER dr.
I left my family practitioner and signed up with a nurse practitioner but she can't really do much. So what do I do? What if I just keep living through the flares and waiting them out?
I take medication but nothing for lupus. Prednisone in 7.5 mg dose for Addison's disease, a replacement dose for adrenal failure. I hate double dosing prednisone but it does work for this if I double, but I am only supposed to double in case of acute illness for the addison;s disease for a short time, and then the lupus falre comes right back anyway.
Trying to get into my rheumy right away who is 2 hours away is impossible, my next app is the end of June.
Boy getting the care I need for this is harder on me that just staying in bed and riding the flare out. Sandra

debbie-b
05-24-2009, 08:20 AM
Hi Sandra,

I am sorry that you are having such a hard time right now. I have stopped, seing a doc, when I am in a flare, because nothing they do for me has helped. So I just ride out the flare. I am in one right now, with alot of joint pain, my right hand is swollen and very painful, my fingers look like sausages, I can't make a fist. I also have, what I call tissue pain, it is located right under the skin. My back and my neck is killing me, can't stand up straight. But last night my husband said something, that makes alot of sense, he thinks I should see the doc every time I have a flare, so that there is a record of it, because sooner than later I am going to have to go on disability.
We wanted to go to Niagara Falls today, but I can't walk for a long time, but we only live an hour from there, so maybe we can go next week.
Hope we can all have a painfree weekend.

Debbie

Delphinia981
05-24-2009, 03:35 PM
Hi Sandra,

Sorry you're having a flare today. I'm with you, unfortunately.

The best advice I have gotten from other people with Lupus (and my doc) is to rest and take it easy when you have a flare. Listen to your body. It will tell you what it can and cannot do.

I'm new at this, so I don't know as much as some of the senior members...but I know this works for me, at least at this stage of the game.

Hoping you feel better soon. Remember...it will pass. Always does!!

mountaindreamer
05-24-2009, 05:59 PM
hi sandra,

so sorry you are dealing with such a bad flare...every day i wish we could make miracles happen and our flares would be gone.

i usually ride out most flares, but when they have just kept me down for extended time, i can go to my dr. and she gives me a medrol injection which seems to really help. Can your nurse practitioner give you meds?

Also, see if the nurse practitioner can call in a prescription for Plaquenil? it takes 4 to 6 months to totally work, but it really helps many of us. The end of June is a long time to wait, but don't let anything keep you from keeping this appointment. Keep a journal betweeen now and then and each day write down what was hurting.

In the mean time, protect yourself from the sun and other uv rays, get plenty of rest, and please take care of yourself.....

there is some great information about life-style changes that we can make to help control flares, these can be found in some of the "stickys" and it might help to follow some of these guidelines.

some one is always around, so call on us whenever you need to.

Sandra
05-25-2009, 08:01 AM
Thanks everyone, it's kind of the idea I had too, just to do the TLC thing until things settle.
But the point was made about how will a dr know about progression if I don't go in to be accessed at least? Not that I want to go in, or that I can go in without finding a driver even if I can get an appointment...Gees!
This too shall pass, thanks Sandra

Saysusie
05-25-2009, 02:03 PM
Hi Sandra;
One of the primary purpose of treatment for our disease is to prevent flare-ups or exacerbation of our symptoms. This disease is replete with relapse/remission (periods when disease activity is lessened and periods when disease activity is worsened). As this relapse/remission can happen so frequently, going to see your doctor each time will probably not do much in the way of assessment. However, your doctor should have you scheduled for lab work at intervals, in order to see if your treatment regimen is providing clinical evidence of lessened symptomology. When you are having an active flare-up, it wouldn't hurt to advise your doctor of this in the event that he may want you to adjust some of your meds.
If your doctor has not put you on a schedule for regular lab work, then perhaps you can have this discussion with him. Your point and your husband's point is one that is very well taken and is one that should be discussed with your doctor so that a visit each time you flare may not be necessary.
I wish you the very best!

Peace and Blessings
Namaste
Saysusie