Cognitive meltdown & IgG

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Butterflake
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Date Joined Jun 2006
Total Posts : 1650
   Posted 12/7/2013 10:25 AM (GMT -6)   
Hi Everyone. I've been having unusual problems for months and finally decided to let you join my pity party. We all have lupus fog which is very frustrating, but my problems have surpassed fog. (Interestingly, I can write better than I can speak.) I now have my adult daughter on my checking account so she can pay my bills, balance, etc. I've been overdrawn way too many times simply because I can't do the math. I have difficulty doing every day tasks. Couple of weeks ago I stood in the kitchen several seconds trying to figure out how to get oatmeal from the container into the pot of boiling water. These things happen often. On a positive note my dermatologist got me in to see her rheumatologist. I really like him. He's intelligent and caring. He wants me to get a functional MRI (the kind that lights up). The waiting list is long, but I've come to terms with this.

Besides my brain issues, I've been so incredibly fatigued for so long that I can barely function. Pain is also a problem. I recently had pneumonia again, this past fall I got influenza even though I had the shot, and I have frequent sinus pain. I had a prednisone taper with the pneumonia which helped, but now at 15mg pred I can't tell that it works at all.

My rheumy ordered many blood tests and found that my IgG was low. He then ordered IgG subgroups and 3 out of 4 were low. I'm now scheduled to see one of the docs who runs an infusion center so I can get IV IG (gamma globulin) infusions. Rheumy says it's often given to lupies with low IgG and most lupies feel better very quickly. IgG works with complement, antigen-antibody reactions, and helps neutralize toxins and viruses. Unfortunately I can't start the infusions until January and I'm so tired of being so tired.

My previous rheumy never ordered IgG levels. I'm trying to be thankful that I have a new rheumy who works hard to find the source of every problem. Thanks for listening. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/7/2013 2:58 PM (GMT -6)   
Feel better, Donna.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 12/7/2013 8:32 PM (GMT -6)   
 
Hi Joy,
 
     I am so sorry that you are not feeling well.  It's interesting reading what you wrote because years ago (before I was even diagnosed), they had run an IGG on me and found that it was low, but no one ever said it was a big deal.  At that time I had fatigue that was debilitating and kept getting infections.  I also had bouts of bronchitis and eventually, pneumonia.  I wonder if other Lupus patients have ever experienced this.  I am sending you a warm, gentle hug, Joy.  Take care and do feel better.
 
Love,
Laura

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 12/8/2013 12:41 AM (GMT -6)   
Donna:

(((((hugs)))))) sweetie I'm so sorry that you're having such a hard time with things. I so get it and I know that you're sick and tired of being sick and tired. I wish I had a magic cure for you, but I don't. Our Lupus fog really can hit us badly, I'm sure it's been really upsetting to you.

It's interesting about your IGG counts being low. I hope the infusion help you and help keep you from getting any infections in the future. I know with the holidays and such you just want to feel better.

Fatigue is such a bummer, for a bit I took medication that was meant for folks with narcolepsy to try to help with my fatigue. It didn't do a lot so I came off the stuff. I hope once they get your IGG levels up maybe your fatigue will resolve itself.

I'm praying for you hang in there. Come and vent whenever you need, you know where here for you.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 12/8/2013 6:01 PM (GMT -6)   
Thank you Ladies. My rheumy said lupus is one of the few conditions approved for IV IG. The expected range for IgG (in the lab he uses) is 900 to 1600 and mine was 700. He said it's not common for lupies to run low, but when they do it's about 550. All I know is he said I should have more energy almost immediately. Thanks again. Love, Donna
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

EnglishSue
Regular Member


Date Joined Nov 2013
Total Posts : 22
   Posted 12/9/2013 2:16 PM (GMT -6)   
Just empathizing here, past two weeks of 'feeling tired' and not sleeping more than 4 or 5 hours a night - usually need 8 to 10 to get restorative sleep. Can usually sleep ok with my sleep meds but for some reason, it's taking forever to get to sleep. I wonder if it's because I start my new Lupus med on Friday and I'm worried. I didn't think I was but maybe I'm pretending not to be. Brain fog is matching the weather -very foggy.. Sucks that I have to keep working 9 hours a day with a 45 minute commute each way. Yep, I understand what you're going through. Hope you get to feeling better.
Sue - English transplant living my American Dream.
Living with undiagnosed disease since about 2005. Many symptoms including joint and muscle pain, inflammation and pain everywhere from scalp to ankles.Large intestine not working - removed. Right sided weakness, frequently unable to walk, memory problems, restless legs, body cramps esp in back and legs, eye and facial twitches. Also fibromyalgia.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/9/2013 3:11 PM (GMT -6)   
Sorry your brain is still giving you issues. I know I've already told you that although my MRI's never found anything in my head, an all-day neuro-psych exam told me I was performing about 20 IQ points below normal.

It can get better from there -- I think my coping skills improved, my Lupus retreated some, and getting more B12 and other brain foods all helped. Then the Lupus became even less active and I feel about 90% of past-normal now.

I hope & pray you will find similar results soon. Hugs always.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 1/23/2014 7:40 PM (GMT -6)   
Hi Everyone. I just wanted to let you know that I'm getting my first IV IG infusion tomorrow. It will be the first of three infusions, will take 3 to 4 hours, and costs $30,000. I'm on Medicare and continue to pay premiums on my federal health insurance from work, so everything is covered. I've been very sick with an upper respiratory infection for over a month. Antibiotics helped briefly. Hopefully I'll be feeling better soon. Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/23/2014 8:34 PM (GMT -6)   
Good luck on it helping you. :)
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/23/2014 9:31 PM (GMT -6)   
Hi Donna,

Good-luck tomorrow Donna. I will be very curious to see how it works for you!

Love,
Laura

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/23/2014 9:41 PM (GMT -6)   
Good luck with the new treatment, Donna. You are worth it!

I'm sorry to hear that you've had respiratory issues for so long, you should have let us know.

Sending healing thoughts your way.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 1/24/2014 6:47 PM (GMT -6)   
Hi Donna, I hope it went well today for you and you see some relief quickly!

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 1/25/2014 3:51 PM (GMT -6)   
Hi Everyone. Thank you for your well wishes. I didn't sleep well Thursday night, just anxious. Yesterday, after the IV IG infusion I had some diarrhea, but I get that fairly often. I slept 12 hours last night and I thought it was because I didn't sleep well Thur, but 3 hours later I went right back to sleep. I'm tired now. I guess that so far, the IV IG makes me tired. I'm looking for energy soon. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator
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