New Flare, Prednisone Withdrawal...or Just Good 'ol Lupus?

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topaz731
New Member


Date Joined Jun 2011
Total Posts : 14
   Posted 7/20/2011 3:03 AM (GMT -6)   
Hello All,
 
    I'm new to this forum and new to the disease. I was diagnosed with lupus nephritis in March of this year and kidney disease in May as a result. I'm having a hard time figuring out when exactly my flare is over and when a new one might be starting. I was discharged from the hospital at the end of April and could see and feel myself getting better until I plateued. I didn't know at that point whether I was still in a flare- more tired than usual, didn't seem to have great stamina, still achy. I expected some of this to a point of course, but maybe not to this degree- I thought I'd be able to walk up a flight of stairs without my legs feeling like they were going to buckle let's put it that way. It just seems no matter what I do I can't strengthen past a certain point. Mid-May I began tapering from 60mg of prednisone down (now 15) so that CellCept (1500 2x a day) could take over.
     So about a month ago I started experiencing EXTREME fatigue. Just sleeping whenever I could get it, and the only time I could recall doing that in recent time was right before my first flare. Sometimes it will turn into me sleeping for 16 hours. It's a physical effort for me to get out of bed sometimes. It has nothing to do with motivation or not wanting to. My appetite started to decrease around the same time. Now I'm to the point where I eat about once a day. My stomach is a complete mess. I have had loose stools for 2 weeks straight without missing a day and nausea for a week straight and taking phenergen everyday at least once. I've also had achiness in my hands, wrists and elbows which are usually not my worst spots (again, mostly happened before my first flare). Hair has also been coming out it seems in much greater quantities in my brush.
     Now, my primary care dr's (who I've only been with since May, post-hospital) first thought was that maybe I was having a reaction to coming off the prednisone. And at that point I had just gone from 20 to 17.5 when the real stomach upset started. My nephrologist, who's been with me through this entire process from pre-diagnosis on- believes it may be the beginnings of a flare. I've yet to be able to see my rheumatologist, but via email she expresses that these aren't all symptoms of the active disease ( I also urinate quite frequently and get "the spins")- so I do assume some of it has to do with the kidneys and probably also the meds.
     My questions are- does anyone have experience with prednisone withdrawal and do any of these symptoms fit? Also, as silly as I feel asking this- how do you know when your flares are over? My bloodwork is stable but obviously not 100%. I know everyone's different, but do you have patterns with your flares? Do any of you have symptoms like this but aren't in a flare? I feel like sometimes I'm looking too hard for something that isn't there. I certainly don't WANT to go into a flare, but I'd like to know the reason for all these extreme symptoms. Anyone's past experiences would be so much appreciated- I'm trying to learn as much as I can. Thank you!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 7/20/2011 7:04 AM (GMT -6)   
Hair loss and loss of appetite are side effects of Cellcept. Just try to eat 3 meals, n0 matter what it is -- you need the energy from food. Try for as much protein as you can tolerate. In my case Cellcept gave me back my brain, which was going...neuropsych tests indicated 15 IQ points lost (which came back with Cellcept, YAY!) Your stomach may be confused as it isn't getting enough food. Also make sure you aren't getting dehydrated, that can cause nausea.

I'm not sure who has prescribed the Cellcept but these are mostly side effects of it. The only thing that sounds even close to a prednisone issue is the need for extra sleep -- you might try going back to about 20-25 and see how you feel. If you've been on pred very long, lower than that point your taper off should be of smaller increments depending on how you feel. Some people can tolerate going down by 5 until 10mg, then go down by 1 after that (1 per week, 1 every 2 weeks, it varies.) Make sure that lower than 15 mg is watched by a dr who is very familiar w/prednisone - it is supplementing your adrenal glands where adrenaline is produced and going off it too quickly can cause you heart to stop.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1341
   Posted 7/20/2011 12:52 PM (GMT -6)   
Pred tapering can cause a wide range of problems.  It could be due to your immune system acting up and it could be that your adrenals are adjusting to the lower dose of pred.  The longer and higher the dose the more difficult it is to taper.  Taper symptoms typically only last a few days and then go away.  Flares....who knows.
 
The most common mistake in tapering is doing it too fast.  Many start tapering as soon as symptoms disappear but in reality your immune system can take a long time to adjust if at all.  There are standard protocols but in severe cases a much slower taper is usually the best strategy.
 
Here is a link discussing the problems:
 
 
Bill

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 7/20/2011 2:32 PM (GMT -6)   
Hey there! I am having a lot of the same issues you are. Everything was and is from the cellcept in my case. the sleep might be a mixture of prednisone and cellcept. It is horrible on the GI system. Maybe you can talk to your doctor about trying Myfortic. It is exactly the same things as Cellcept except it has a coating on it that causes it to pass through the stomach before being digested. the only bad side is Myfortic is name brand, so might be alittle more expensive. So instead of paying 10 bucks, I pay 40 with insurance.

As Lynn said, please make sure you are keeping youself well nourished. Your body needs the proper nourshments to stay as healthy as it can! My nephrologist has me tapering 20mg a week until I get to 20 mg and then it will be taken at a much slower rate! If you are hesitant about how quick your taper is, please talk it over with your rhuemy who deals with it so often!
Amy
Lupus Moderater
Myfortic, Prednisone, carvedilol, Eliphos, furosemide, sodium bicarbonate, Celexa
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

topaz731
New Member


Date Joined Jun 2011
Total Posts : 14
   Posted 7/20/2011 9:46 PM (GMT -6)   
My nephrologist prescribed the CellCept and I've been on that dose since March, and have had no noticeable stomach issues with it until now. For my stomach I'm taking Reglan and Protonix daily and phenergen as needed. The prednisone decrease was from 60, 5mg every week until we got to 20, and then 2.5 mg. Right now though I'm stuck at 15, as we're not quite sure what my system's doing.
I guess I'm just surprised that I would be having these reactions to the meds at this point in time after being on them for so long- like the CellCept, which is I guess why my neph was thinking it was a flare coming on. I'm still having a hard time distinguishing flares (or the beginnings of one) from just bad days.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 7/21/2011 8:08 AM (GMT -6)   
that's about how long it took the cellcept to start with my hair & lack of appetite.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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