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A never ending flare

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Posted 6/26/2013 6:40 PM (GMT 0)
Hi Everyone. For over a year now I have been flaring. I saw my rheumy yesterday and told him the increased Cellcept he prescribed gave me several good days during the past two months. Prior to the increase my hubby described my days not as good and bad, but bad and worse. I'm thankful for the good days, but even on the good days I have this underlying flare. Always some pain and always some fatigue. I asked rheumy if it's possible to have a constant flare and he said, "Absolutely." Benslysta didn't work for me, so I'll stay on the Cellcept and appreciate the good days. I hope none of you have the never ending flare, but I'd like  to know if I'm alone on this. Love, Butterflake
Posted 6/26/2013 11:16 PM (GMT 0)
Butterflake, I'm always fatigued and hurting in some degree, some days more than others.
My rhuemy is always slow to give me anything beyond plaquenil, gabapentin, and tramadol. Even then he's reluctant to go higher on any of it. He won't give me more than a predisone pack during bad flares. He blames a lot of my pains on the fibromyalgia I've developed.

Sometimes I think it's good he's not piling tons of meds on me, but then I wonder if he's really that great of a doctor.
Posted 6/27/2013 1:00 AM (GMT 0)
 

Hi Butterflake,

     There have been times when I have had a similar experience.  The flare never blossoms into one of those full force Lupus storms, but always seems to lurk just beneath the surface.  I have constant aches and fatigue that wax and wane over a 24 hour period.  I might get a little relief here and there, but for the most part, the presence of those symptoms are always there.  When that happens, I feel myself getting more run down and frustrated because I feel "off kilter" and "icky".  Not horrible, like I do when I have a monster flare, but just not right.  The last one I had like that lasted almost a year.  Thankfully, that hasn't happened in a while.  Hang in there Butterflake!!!   I will keep you in my thoughts.

Laura

 

Posted 6/27/2013 7:01 AM (GMT 0)
Butterflake,

I'm so glad you posted this (however not glad you're feeling terrible). I was diagnosed a year and a half ago and I feel like I've never stopped "flaring." I've been on so many meds and prednisone up and down but have never gotten to that happy place of feeling pretty good. I do have some good days, usually after I've been in bed the entire day before but at least I do have a few. I was on cellcept until I had a scary blacking out/confusion incident where I drove and shopped and remember nothing about it. My rheumy stopped my cellcept hoping it was just that but now all I'm on is plaquenil and prednisone and feel even worse than before. I feel like I tackle one symptom and another shows up. I can just never get ahead of it and am always hurting somewhere. I hope you start to have more good days than bad but know on your bad days you are not alone.

Nicole

Posted 6/28/2013 4:14 PM (GMT 0)
Thank you so much for the replies!

Joy, I have fibromyalgia also so it adds to my discomfort. I also have Sjogren's that currently is really flaring.

Laura, I'm so glad to hear your mega flare subsided. It gives me hope!

Nicole, usually rheumies try plaquenil, then methotrexate, Imuran, and then, if those don't work, they pull out the big guns (biologics). Plaquenil takes up to six months to work and my rheumy has kept me on plaquenil for years and adds other meds to it. CellCept actually helps my cognitive function.

Yes, it sounds bad to say this, but I'm glad I'm not alone. Love, Donna

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