I feel so embarassed about this thing here.....looking for some help

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PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 12/5/2011 8:20 PM (GMT -6)   
I recently started Plaquenil and was on a 3 wk taper down on prednisone.  I was within 5 days stiff like the tin man the mouth dryness is so bad and painful and I have to put eyedrops in my eyes every hour because my eyes are so dry my contacts are ripping while they are in my eye.  So.....I went to my internist and he said he wants me on a small dose of steroids for a long time once we get this flare back under control.  But at the visit he gave me a huge injection of steroids and definitely increased my steroid dosage for two weeks because my symptoms came back so bad it was awful.  He also gave me this stuff for my mouth called Dukes you swish it around in your mouth and then swallow it.  Ok....here goes......late that night when I was home I began having conversations with patients in our dr office but I was at home.  I would finally come back to reality but I would have problems coming all the way back.  I got onto this website that offers different types of medical conditions that can cause this type of behavior..  and what did I find......Lupus.  One of the reasons they offered was that during flares we are given steroids and sometimes higher doses which makes things worse. 
it hasn't happened again since but I still feel pretty funny, I am so tired, foggy and fuzzy .  So......any thoughts anyone?  

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 12/5/2011 11:00 PM (GMT -6)   
The Dukes is one teaspoon before meals and at bedtime -- did you maybe have too much?

Otherwise I never had the "fogginess" from Plaquenil or Prednisone, but did have it when the lupus was flaring. My guess is that you just reached your limits for the day and needed to stop, rest & regroup. When I was flaring I'd only be good for 3-4 hours before I'd start loosing reality sorta' like that.

Don't be embarrassed....life happens and lupus happens and sometimes it just sucks.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

whatdabuck
New Member


Date Joined Dec 2011
Total Posts : 2
   Posted 12/12/2011 8:01 PM (GMT -6)   
Hi!

I have Lupus too and I get really confused or forget where I am. Sometimes this causes not hallucinations but like you said I get kinda locked out of reality. It's kinda scary and I find it really embarrassing too because there's not much I can do about it. I'm 20 and it feels like I have Alzheimer's and no one understands. I forget where I've been for the last couple hours or I forget how to random things. Also, I have issues with subconscious activity, like if someone leaves the room and then comes back I'll notice that they left and not that they came back and it'll take me a while to figure out that there's not an extra person in the room. I'll get randomly scared that there's an imposter or something haha. I've talked to my rheumy and he said this is all common and not to be worried about. I know it can be embarrassing and that it's frustrating but you're not alone! We're all a little "Luppie" togther =D

-Andrea

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/13/2011 6:50 PM (GMT -6)   
Try being an elementary teacher with short term memory quirks. I'll forget a child asked me if they can go to the bathroom. When they come back I fuss at them for leaving the class without my permission! If I don't write down stuff don't count on me remembering it later.
It's very frustrating!
Joy

GARDEN CHEF
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/18/2012 10:59 PM (GMT -6)   
Joy, Thanks for your post. Hearing your words makes me feel sane. I have always been at the top of my game as a teacher/administrator. All of a sudden...I can't remember squat. If a student leaves my office and another comes in, the first student is forgotten unless I make a detailed note. Not possible with the frantic revolving door of phone calls, parents, teachers, etc. At home... Is the dog still out in the rain? Who was boiling eggs in here? Why is the milk on the counter? You know when you go to another room to do something and can't remember what it was? Pretty normal for everyone occasionally. Well how about going into another room to get something and not even realizing you forgot what it was because you just start doing something else. How bad is that to not even realize you forgot? This is totally not me who is used to being a type A in control of all situations. So this is the Lupus fog?? Shew!!

NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 541
   Posted 1/19/2012 6:26 PM (GMT -6)   
I'm currently in a minor flare and last night my husband was teasing me about how he took a bath in RO water and I looked at him and asked him if he took a bath in the fish tank. He busted up laughing and this morning I didn't even remember the conversation. I was just so tired and out of it that I couldn't comprehend what he was saying. I, too, am a supervisor in an elementary school and I have memory problems alot. Thankfully, the team I supervise know me well enough to help me at those times. It gets pretty frustrating when I can't remember things and very embarrasing since I am supposed to be a leader.

:-)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/19/2012 8:08 PM (GMT -6)   
I had two episodes today that will make you die laughing. I cracked up when I realized what had happened.
 
This morning I climbed into my car to go to work. I started taking things out of my hands to put on the seat beside me. Suddenly I looked at my hand and realized I had the house phone in my hand! shocked
I took it back inside laughing my head off. My mother looked shocked at me and I handed her the phone and said, "I guess I was going to use the house phone today!" turn turn turn turn turn turn turn turn
 
After work I stopped at the restroom and laid my coat, hat, and sunglasses in a chair next to the bathroom. I went in, came out, washed my hands and went on down the hall to a meeting. Later, I was in another teacher's class helping her and a parapro popped her head in the room. She said, "Don't forget your coat."
"My coat?" I said. "Yeah, it's in the teacher's lounge. Isn't yours brown and furry?"
 
I had totally forgotten my stuff! smhair
 
But what makes me really mad is one of my co-workers! devil
Yesterday, we were doing plans together and my brain was very foggy. Since I'm the only one who knows the format we type them in I've been deemed the typist. I'm also considered the lead teacher by the principal. Well, I'm digressing... I'm very foggy...I'm having to listen to the other two dictating to me what to type...brain's slow.... They start giving me these long techinical words that required me to think on how to spell them. After stumbling over how to spell two of the words my co-worker spits out, "Did you ever pass spelling?" mad mad mad mad
I turn to her and say, "I can spell, but my brain's not working right now!" mad
I'm still steaming!
 
As a child I had a terrible speech impediment. I was in speech for four years. Today you wouldn't know it unless I'm tired. But that impediment, paired with a terrible first grade teacher, has handicapped my phonics and spelling. Foggy mind doesn't help either! I believe I'm becomed a better speller over the years and also they have invented Spell check!
Joy
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