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Discussion Starter #1
I had to leave work early Friday because I was feeling so bad. I called my rhuemy and of course with it being Friday his office is closed. So his nurse told me to go see my primary care physician so I did and come to find out I have a UTI and they put me on a really high dose of antibiotics for the infection and upped my prednisone so fight the flare. I am so disgusted. I have gained 65 lbs since I was diagnosed in Dec and now they are going to up the steriods so I can gain more. I am hurting all over and forced myself to go to work today. I am so sick and tired of being sick and tired. I could not do anything this weekend.
 

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Don't be disgusted, the pred will help limit the damage to your internal organs and shorten the flare...it could be just a short term dose..in fact you could ask to make sure they do just a quick sharp shock course of pred... I can understand how sick of it you are but you will get to the end of this flare and still perhaps feel fed up, but a bit more on an even keel...sorry you feel so rough, just give yourself a bit of pampering, take care and hope you feel brighter soon...
sending you lotsa hugs.
Claire X
 

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((((Mississippigirl))))

Sorry that you are feeling so rotten.:(
I hope your antibiotics kick in fast for you and you will be feeling better in no time.

Pred is the love/hate med. Love how it makes you feel and hate the side effects. Have you been on pred since Dec?

Take care and give yourself lots of TLC,
Love,
Lyn
 

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Hello,

I'm just wondering, apart from the pred, what other meds you are on?

Most rheumies will only want to see you on higher doses of pred for the minimum length of time and I'm thinking that maybe your rheumy might want to try introducing some other "steroid sparing" medication such as immunosuppressants if he/she feels that your disease activity is not being sufficiently controlled. Maybe the rheumy feels it is too early to be doing that and is "waiting" for plaquenil to kick in?

When is your next rheumy appointment due? Is there any way you could get in and see him/her earlier?

Just some thoughts...

hugs :hug:
Katharine
 

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Discussion Starter #6
I am taking imuran, diflusinal, b complex, vit d, and pred. My next rhuemy appointment is May 28th. I really think I am going to change drs I finally found one in my area that just started taking my insurance on May 1st. When I go into my current rhuemy and I tell him something is wrong his answer is always the same which is "its the lupus" no explanation or nothing just "its the lupus'
 

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Hello,

I am so sorry, your feeling so badly. Please don't feel disgusted with yourself.
You can't help being so ill.

I know it is frustrating to go to the dr, and tell him how badly your feeling,
only to be told "it's the lupus." Like we aren't aware of that fact...already.
I hear that too, and get frustrated hearing it.

Please just focus on getting past this infection, and take the Pred as prescribed, then when your feeling able, and ready. Maybe, do something to pamper yourself.

Go buy yourself some pretty shoes or a new purse, get your hair done, or have a manicure, or pedicure. Just do something for you, as a personal boost.
You deserve it, and much more!

I know the weight gain is awful from the pred. I am fighting the battle and losing that one, also..I guess, we can only take one day at a time with the weight battle. Some days we win, and other's we don't. I do understand how hard it is to maintain a healthy body image while on pred. I am sorry we have to go through it, to have some quality of feeling better.

Take good care of yourself friend.

Love,
Sandy
 

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Before you decide to change doctors, since you have an appt on the 28th, I would suggest you give this doctor one more consideration.

Take a piece of paper, and on one side, write down the things you need FROM a physician. On the other side, write down what you will bring TO a physician. Take this list to the doctor's with you. Go thru it with your doctor and if his reaction is not supportive, then go thru with plans to change to a new doctor.
I used this method before I switched to the rheumy I have been going to for many years. It gave us both a clear idea of what we each had and needed from each other. Obviously, it has been a good thing as we have been together for a long time. BUT he is the 4th rheumy I have gone to.
Good luck and I hope you feel better soon.
Sally
 

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Miss girl,
It seems that you are going to need a letter on a script (this is very important) to hand into your work. I know I have already been through this and they have to listen to what is on the script. You will have to be able to be home when you don't feel well. You have to talk to your rhuemy about this and get him involved with this.

The UTI's can really be painful and having lupus and other problems just makes it all that much worse. Honey as for your weight, you have a real medical reason for it. I struggle with my weight everyday and have decided that my weight at this point is not a medical issue right now so it is at the bottom of the list. I loved to walk and often did for 5 miles a day just for exercise before all of this hit me. I remember doing some old richard simons exercises when I was a teenager that I have started and they are pretty easy on my body. The hardest part is getting to the floor and getting back up again lol. It is not from the weight, just the joints. You do what you can and it still works the same that is the beauty of it all. They are 2 times a day, first thing in the morning and again just before bed. They take about 5-10minutes to do and most are stretching.

I do hope that you feel well enough to decrease the steriods soon.
 

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Discussion Starter #10
Thanks to everyone. I seem to be feeling a little better slowly but surely. I just hate the set backs. You think you are doing ok and then something else hits and throws you for a loop. My goal at this point is just to clean my house that is all I want out of this week. Luckily my work is very understanding and if I need to go home I can. Unfortunately financially I can not always afford to go home.
 

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a little better is better then nothing and im sure you,ll get your house work done soon if i could i would do it for you or at lease help you take care and keep your chin up


huggs of plenty
donna
 
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