How often do you all flare (on average)?

TiBoBi

Regular Member

Joined : Mar 2008

Posts : 89

Posted 3/24/2008 11:06 PM (GMT 0)

I feel as if I am always in a flare. If I really think about it, there is only about

1 week out of each month when I am not. To me, that is not a flare if it happens

all the time. Maybe I am so new that I have not really had a flare yet but this

is just the norm for me?? When I say "flare", I am talking about severe exhaustion,

arms and legs that feel like lead, feels as if my "plug" has been pulled and there

are various aches and pains and creaking of things. Would you describe that as

a flare?

okie

Veteran Member

Joined : Dec 2006

Posts : 2818

Posted 3/24/2008 11:33 PM (GMT 0)

Hi Ti, when I first got sick I had a continueous flare like you are talking about. I don't normally have a (flare anymore) I have things come up but nothing like when I first got sick. What you are saying I would have to say your lupus is not being controled very well. Are you on plaquenil? if so it can take a good 6 months before it starts to help. As for the tire part I'm afraid that is somthing you will pretty much have to live with. Predisone does help to a point. I have to stay on 5mg. for what they call quality of life. Unless I get really sick and than I have to take a higher dose.
It sounds like you need to discuss this with your rheumy and tell them that you aren't feel better and what else can they suggest. If they don't help it's time to get a new rheumy. You shouldn't have to live like this all the time.
let us know
hugs
carol

jhmom

Veteran Member

Joined : Oct 2004

Posts : 2244

Posted 3/24/2008 11:57 PM (GMT 0)

Hi Ti, in my opinion if you feel like you are in a continual flare, your lupus is not under control. You need to talk to your doctor about it, it may be time for some more meds. What meds are you on? You were recently dx right? It may take some time to see an improvement, it took several years for me to feel better with the right "cocktail" of meds.

A flare is usually an increase in your symptoms (fatigue, joint pain, etc) or new ones. For me I get mouth sores, GI issues, increased fatigue and joint pain. I sure hope you start feeling better soon! Hugs

Jenny S.

Regular Member

Joined : Oct 2007

Posts : 80

Posted 3/25/2008 12:15 AM (GMT 0)

Ti, I was disagnosed with Lupus in 2001, but didn't start having the extreme fatigue and constant flares until 2007. At that time my Rhumey put me on 10mg Prednizone a day. Now I've tapered down to a 5mg doseage. That med was the answer for me. I'm not cured by any means, but I feel much better having more energy but still have to pace myself. Hope this helps. :)

TiBoBi

Regular Member

Joined : Mar 2008

Posts : 89

Posted 3/25/2008 2:58 PM (GMT 0)

Thanks you for your replies. I am on on the following meds:

Hydroxychloroquine

Prednisone (tapered to 3 mg and about to drop to 2 mg)

Fosamax

Hydrochlorothiazide

Liprosil

I have not been on the meds all that long..and I guess it does take time to get
the cocktail right but even with the increased Pred... i still felt the same.

I will talk to my doc about it more.

Thanks,

Ti

hippimom2

Veteran Member

Joined : Jul 2005

Posts : 5403

Posted 3/25/2008 8:06 PM (GMT 0)

Hi Ti, I agree with the others in that it sounds like your lupus is not well under control yet. No one likes to be on prednisone, but you are on a really low dose - a little higher dose might help you feel a little better. Also the hydroxychloroquine takes a long time to get into your system and start to work. A few times we have talked on here about what it feels like to have lupus and what is everyone's "normal" and what type of quality of life we should expect to have. I think for myself, I'll always have pain and fatigue, but as long as I can manage to do a few things through the course of a day, then it's a pretty good day. Every so often, I have some really good days. It's so hard to judge what we should accept as far as how good or bad we are feeling. It can take a while to learn to pace yourself too. I do remember feeling like I was in a constant flare before I started on prednisone though. So far, if I try to go below 7.5mg I start feeling really rotten again. Please do talk to your doc - they might want to adjust a few meds. Take care

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