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BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 3/7/2009 1:02 AM (GMT -7)   

The last 5 weeks have been horrible to say the least.  My Rheumy told me at my last visit that he needed off my prednisone plaquenil and celebrex to get an unmasked look at my condition.   I have been slowly coming off everything with the pain, stiffness, fatigue and now brain fog coming on stronger.   I’ve been off everything for 5 days now and it’s at its worst.  I’m just glad I’m in to see the rheumy on Tuesday.  Every joint hurts the muscle pain is horrible and my hands feet and nose are freezing.   I sound like a bowl of Rice Krispies with every joint cracking and popping.

 

Does anyone else get the brain fog feeling with MCTD, Lupus or UCTD?  I had never thought of it as a symptom before but I realized I haven’t had it since I was on prednisone and now I have it when I’m off it.   I used to get it all the time and never thought much about it.  


DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, ?????  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg and Amitriptyline 10mg
Life is what you make of it.  Just something I try to remind myself every day.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/7/2009 9:18 AM (GMT -7)   
Hey Bryan,
 
Oh, I feel your pain. These unmasked looks of your condition are so very hard to live with, but so necessary.  I'm glad your rheumy is doing this.  I think you'll get some profound answers.
 
Yes. Brain fog is incredibly prevalent in Lupus.  I think we all have it in varying degrees! 
 
Your freezing hands, feet and nose is probably Raynaud's Phenomenon.  Very common in Lupus.  Same with the cracking/popping joints. I often refer to myself as having a Rice Krispie body!
 
Also to note, the Raynaud's, brain fog, and the joint issues can also be Fibromyalgia. Ask your rheumy to give you the physical test for Fibromyalgia. He'll press on certain places to gage if you have a lot of pain. Ever feel like your body is one big bruise?  Or if you bump into something, does it hurt like heck?  Fibro is very prevelant in Lupus, MCTD, UCTD, Sjogren's, and amazingly, GERD is a symptom of Fibro too! 
 
Make sure you ask about it.  Just to be sure. Let us know how you make out okay?
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/7/2009 6:16 PM (GMT -7)   
Oh I feel for you, I wouldn't know what to do if my doc took me off all my meds. I understand why your doctor is doing it and I can only hope he/she figures this out quickly for you and you can start back on your meds and feel better! You are in my prayers.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 3/7/2009 7:13 PM (GMT -7)   

Sounds awful, Bryan - so sorry you're having to go through it.  I don't really understand the reasons - but it sounds like others do.  Hang in there - hope you get some relief very soon.

lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 3/7/2009 9:34 PM (GMT -7)   
Hi Bry,

I was wondering how things were going with you, I remember you posting that the doc was wanting you to come off of what I thought was prednisone, I didn't realize it was all your meds. OUCH! I know you must be absolutely miserable to say the least, but as the others have said it really is a good thing that your doc is doing these meds mask our blood work and do not give the doctors true readings of our true condition. So, I will be praying that all this pain they are putting you through will give them so clear answers on your blood work and give you some answers on your overall condition.

Please keep us posted!

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 3/8/2009 3:28 PM (GMT -7)   
Thanks again for all your support and the great info.

Folks like you keep my spirits up.

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, ?????  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg and Amitriptyline 10mg
Life is what you make of it.  Just something I try to remind myself every day.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/9/2009 8:05 AM (GMT -7)   
Hey Bryan,
 
We have a new member, Red83hd. He's looking for a diagnosis. Just thought you two might appreciate sharing your experiences, etc, from a guy's point of view.
 
I hope you're doing okay. Check in with us when you can, okay?
 
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums

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