Not doing well

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Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 9/3/2010 11:34 PM (GMT -6)   
The fatigue is still a constant problem but right now I am frustrated because I tried to read for 1/2 an hour and got a headache. I just went down to 15mg prednisone Wednesday and am wondering if it is too much to ask of my body right now. But the doctor was adament that I lower my dose to 15mg at my last visit. He said if I didn't do well at first give it more time. I am afraid my neurological problems will all flare up again though. I see the rheumy the 15th he is out of the country right now. I see the neurologist the last Monday this month. I am taking forever to make this post and am sitting in the dark. I had to get away from hubby's snoring. I wish I had better news. Anyone have any ideas on why I would be so tired I am literally sleeping more than I am awake? I feel weak and feverish often. My foot hurts like back when I had plantar faciitis in both feet (sp) only it is just the right foot this time around. My joints are all slightly inflammed. My checks are slightly pink. I know the lupus is trying to flare but being this tired just doesn't make sense. I am awake now only because of the head ache. I am doing treatment for another yeast infection of the skin under my arms this is the second time since July that this has happened. I am worried I am going down hill with nothing to stop me because my rheumy wants my prednisone dose lowered. I need advice any help you can offer.

Forum Moderator

Date Joined May 2005
Total Posts : 6935
   Posted 9/3/2010 11:42 PM (GMT -6)   
Don't worry. There was a point for me when I was also literally sleeping more than I was awake. What happens is something is keeping you from getting a deep restorative sleep, so the time you spend sleeping is a low quality sleep. Sometimes reducing prednisone can help your body get back to a more normal level of arousal & help you get a deeper sleep.

I also suggest taking ibuprofen or whatever anti-inflammatory you can use with a small snack right before bed, as well as lower the temperature in the bedroom a few degrees & getting snugly with clean fresh clothes & sheets.

It isn't good to rely only on prednisone...if you can get the dosage down your rheumy may have some other ideas about how to control your symptoms.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 9/4/2010 7:42 AM (GMT -6)   
What dose were you on before you dropped down to 15 mg? Could up maybe go back up half of what you were taking for a few weeks? then go back down to 15? For example...I was on 10 mg went to 5, couldnt tolerate it so went to 7.5 for a few weeks and then when I went do to 5 I was ok. Not great but much better than before!

So sorry you are having such a rough time redrose, i hope you and rhuemy can get something figured out to get you down on the pred and feel better
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

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

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 9/4/2010 7:10 PM (GMT -6)   
I was on 17.5mg before dropping down to 15 so no real way to go up a step before dropping back down again at least not with 5mg pills. I am just hoping we can figure out what is wrong with me before it gets much worse. I keep spiking a low grade fever which I know means something is happening. Just not sure what.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence
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