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Discussion Starter · #1 ·
This flare is really kicking my backside. I feel like I got hit by a bus, or maybe even something bigger. I started a pred. taper pack 9 days ago, toomorrow will be the first day down to 10 mg and will stay there. But I don't think it's helping at all. If anything maybe it's making things worse.

I've run a fever, up to 100.something and back to just above normal and back up since night before last. I ache all over, but don't hurt anyplace specific. No symptoms but misery. I can't sleep and can't stay awake. My thermostat is totally broken. I'm shivering and then burning up.

And on top of it all, I've got pred cravings for ..... just about everything. Only problem is that actually eating anything other than white bread makes me nauseated.

Yes, I'll call my doctor Tuesday morning (they don't come in on Memorial Day and I hate to make them touchy by calling on a day off). But until then I'm just sort of trying to stay out of everybody else's way in the house and pretend I don't feel as sick as I do.

I'm open to suggestions. I'm swilling cool water and sleeping with a cool cloth on my head. I'm taking NSAIDs for aches and fever. Can't really think right now, but I feel the fever starting back up.

Oh yeah, I have screaming reflux for the first time since.... oh, that's right, for the first time since I went off pred around 8-9 months ago.

I hesitate to call my doctor when I don't know what to ask for or to complain of. "I feel like I was hit by a bus" doesn't really work with him. He's literal. I'm just too sick not to call if I still feel like this Tuesday.

Thanks for listening to the whine,
Sunny
 

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Hi Sunny,

I also have chronic fevers that then set off all my symptoms. I purchased these head bands from Home Shopping that I keep in the refrigerator. They stay cold for quite a while. They come in sets of three.

I hope you begin to feel better soon.

Take care,

Susan
 

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Discussion Starter · #3 ·
Susan, has anyone ever given you a medical reason for the fevers? I've had problems with it always, but lately I seem to keep a fever almost all the time.

Thanks for the idea about the headbands. I'm looking that up right now. It just sounds so soothing.

Sunny
 

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(((((((Sunny)))))))

Im really sorry you feel so awful. I hope there is someone keeping an eye on you? In afraid I cant offer any advice other than what you are doing, i.e. drinking plenty of water and trying to stay cool, etc.

Its just miserable feeling so rotten for so long. I think you are right about contacting your doctor tomorrow. I know its very hard to explain to someone how sick you feel, but pick out those symptoms that you can clearly describe. Tell him you feel like you have a very bad dose of flu with temperatures going up and down (maybe keep a record of those temps), all over aches, etc. Also tell him about the acid reflux.

Ask him if there is anything else you can take or do to help you through this. If you are having problems carrying out basic self-care tasks like bathing, cooking, eating, etc let him know. You could also ask him at what point should you seek more help from him - say if this doesnt improve in a certain number of days for example.

Im really sorry I cant give you any better advice Sunny. I truly hope you will start to feel better from today onwards. Let us know how you are and if the doctor has any words of wisdom or other help for you.

Lots of love and strength
Joan:rose:
 

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Hi Sunny,

I am so sorry you are suffering so much... I know where you are at I have been there before...
If I were you I would put down all the symptoms and if your pain feels like you were run over by a bus then tell your doctor that... Tell him about everything...I am sure they have heard it all... And being run over by a bus.. is extreme so he or she will know you are not kidding around...
I hope you get through real quick and they are able to get something into you that will help you feel better...
Sucking on ice cubes when you have a fever helps... Take good care of yourself and get lots of rest... Good luck... and please let us know what happens...

love Penny
 

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I can completely relate with how you feel. I also am struggling at this time with prednisone weaning and the flareup is back then back to 60mg of pred etc....Im down to 10mg and the lupus is back....the prednisone just starts to make me feel better when its time to wean to a lesser dose. The weight gain is another issue. There is no happy in between....I have fevers also. I wish you well!!
 

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Lol. I totally understand how u feel. When my sister asks me how I feel everyday, my answers are either I feel like I got run over by a car, bus or train. Train being the worst. Lately I wake up feeling like I was bulldosed by a war tank! Best wishes. Hope you feel better soon.
 

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Hi Sunny,

I'm sorry you are going through such a rough time. Did you manage to get hold of your doctor today?

Sending you gentle hugs and hope you feel better soon :hugbetter:

Lots'a'luv,

Pam xxx
 

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Sunny((((((hugs))))))

It sure does seemt o never ending with this disease and you also have been through so much ((((hugs)))) already.I feel the same way about doctors and calling them when you know you are ill but feel like they will do absolutley nothing for you or look at you like what is your problem(((hugs)).I am there with you but you need to put your foot down and go see him and not leave until he does something for you.I been having a real bad time with my hands for like a year but slowly getting worse.They told me that i have osteo arthritis in my wrist anf between that and the carpell tunnel oh and the raynaunds it is nothing they can do for it.Sorry i did not mean to go off on me :rotfl:.I sure am hoping you got something resolved by now and please let us know.

Tammy
 

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Hi,

Regarding my fevers, my doctor feels it is a symptom of my lupus. I can have 10 to 20 episodes daily or on a good day, 5. I blast the air conditioner and where my ice pack head bands. Prednisone has no effect on me so I'm on plaquenil, methotrexate and host of other drugs. My doctor sent me to an infectious disease specialist to see if there was a secondary issue causing the fevers, but nothing else was found.

Take care and keep cool,

Susan
 

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Discussion Starter · #11 ·
Thanks for all the concern. As I posted elsewhere, dr. decided I have a lung infection, probably there for a long time. I'm taking doxycycline (will be done Saturday -- Yay!) and back on 10 mg a day pred for the duration. Yuck.

My reflux is going full strength again. Hadn't had even a tiny problem with it since going off pred months ago. But I'm taking um, can't remember the name. It's OTC now but used to be Rx. Take it once a day and it's supposed to kill the acid. I took it by Rx for years. I guess I'll take it a bit longer.

I'm feeling better. Fevers gone. Mostly. But I still can feel "something" wrong in the bottom of my chest. It will just take time I think.

Anyway, it 's good to know that something can help. I get so used to believing nothing will make a difference that I forget to look for a solution.

Hope all of you are feeling well.

Susan, I feel for you. What a miserable symptom. You would think they could come up with some way to control your temperatures. Although, it takes nearly nothing to make me "lose my thermostat control" and I have frequent fevers. When I'm stressed or tired it can swing by two degrees in a few minutes, either direction.

Please keep looking for a solution. Even if it means going to different kinds of specialists and getting second, third and fourth opinions.

Sunny
 
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