A friend with Lupus.

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New Member

Date Joined Apr 2007
Total Posts : 2
   Posted 4/19/2007 5:46 PM (GMT -6)   
I have a very good friend who has lupus, she has been sick for about 8 years, but was just offically diagnosed one year ago.  Over the least 18 months she has had some very very sever flare-ups.  The last one was in march when she was hospitallized for over a week, andmany people didn't not beleive she would live.  Well while in the hospital she got a new doctor and lots of new medicines.  And within a week of being released from the hospital she was a new person, she described it as waking up from a coma.  we about 3 weeks ago she started having exteme mood changes.  She has left her husband (who just 2 months ago thought was the greatest man in the world) and her 4 kids, she got a boyfriend, a new job (she was a stay at home), quit her church, and has turned on ALL of her friends.  (I didn't know about most of the changes until today, i have been trying to get hold of her but she wouldn't retun my calls, when i talked to her husband today he informed me.  the last time we talked about 2-3 weeks ago our relationship was the same, and now she would talk to me and has nothing to do with me).  She is also drinking heavily (she used to not drink at all), and smoking (she had quit years ago), and partying. 
I know very little about lupus, and i am worried.  I don't know what to do for her and i am very worried what she will do to herself.  Her husband is afraid that she is Bipolar, but can't get her to get help.  is there anyone out there with advice. 

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 4/19/2007 6:18 PM (GMT -6)   
Becci, so sorry to hear your friend is going through so much. I don't know what would cause her mood swings and make her make the choices she has made, you are a good friend to try to help her. ((((( hugs ))))) I have no advise to offer you but wanted you to know you, your friend and her family will be in my thoughts and prayers. Take care

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (gluten sensitivity)2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds:Imuran, Plaquenil, Flexeril, Sulindac, Levoxyl, Folic Acid and magic mouthwash (as needed)

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 4/19/2007 6:35 PM (GMT -6)   
Becci, I am so sorry to hear about the change in your friend's personality - that has to be so hard on her friends and family. Like Stacie, I have no idea what could have caused the change in personality. It's hard to know if the meds had anything to do with it - do you happen to know what she was put on? Lupus can sometimes attack the central nervous system, causing problems like psychosis and seizures. Or maybe her near death experience and then new found health had something to do with this - it's just really hard to say. One thing for sure is that she really probably shouldn't be drinking - it really doesn't go well with most of the meds used to treat lupus.

You sound like a very good friend and I hope your friend will talk to you soon and be able to talk to you about some of this. I wish I could help more or have more answers for you. Let us know if you have any other questions.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 4/19/2007 7:49 PM (GMT -6)   
I really do not have anything to offer. If you can talk to her, dun preach to her at all. Be there for her and let her gain enough trusts in u. Let her be the initiatier.

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 4/19/2007 9:00 PM (GMT -6)   
Some of the meds used for lupus are very well known for causing mood changes, particularly large amounts of prednisone. Unfortunately, it's usually not addressed unless the patient reports the issue to the doctor -- some patients do not even realize that they are not acting like themselves.

The only suggestion I can come up with is that her husband inform the treating dr of all the changes in her behavior. And even that can't be done unless the husband has already been actively involved in dr/patient conversations.

Besides letting her know that you still are there for her, care for her, and are not going to judge her, I'm afraid there isn't much more to be done.

Take care,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
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Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 4/20/2007 4:39 AM (GMT -6)   
When you mentioned her symptoms it reminded me of someone I know that is bi polar. Than again like somone else said here high does prednisone can cause the same symptoms. Unfortunately as long as she isn't doing anything illegal there isn't much that can be done. If she is doing all this stuff than chances are she will become very ill again and end up in the hospital. Hopfully when that happens you and her husband will be in a position to help her. She has changed so fast it has to be caused from somthing.

I hope you get to the bottom of it and continue to come here if you have questions
good luck
god bles
God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Regular Member

Date Joined Apr 2007
Total Posts : 104
   Posted 4/20/2007 7:44 AM (GMT -6)   
Hi Becci - that is quite the change. I can only offer this advice to you. Stick with your friend and SUPPORT her decisions no matter what!!!! I was married to a decent guy some years ago but I truly wasn't happy. I was planning to leave him but I got sick. I had a terrible bout with hepatitis and really did think I was going to die. While I was sick, I leaned on hiim for support and forgot all about leaving. As soon as I was well again, I realized that life was too short to continue living a lie and I left. I too shocked everyone and people assumed that my reasons were invalid but they were very valid. Sometimes it takes a nudge (or thinking we're going to die) to move us forward and this is what may have happened to your friend. Lupus isn't fun to deal with at all. The pain itself can be very hard to deal with so who knows - maybe that has led to some unhappiness in their marriage too... my (new) husband says I'm grouchy (well, he has a better choice for a word...LOL)
Anyway - Be there for her!!!

New Member

Date Joined Apr 2007
Total Posts : 2
   Posted 4/20/2007 12:42 PM (GMT -6)   
The hardest part of this situation is that i am moving from El Paso Texas to Lynchburg Virginia next week. She has been a very key person (up until she dropped out of my world) in helping with the move. She has been my emitional support and an advice giver. I miss it and feel almost as if she died in a way.

Also I want everyone to know I don't plan on preaching to her. I will not deny to her that I love God and that He has helped me, but she is going through something I can't even explain. I just want her to know that no matter what happens I love her. Even if she makes ALL the wrong desicions (and i have no idea what they may be). She is always going to be my sister. She doesn't want God, and I know I can't force it on her. Jesus is HER personal savior, and she is the only one who can turn to Him. It is so weird having her go from being a leader in the church, to hating the church and everyone in the church. According to her husband there are times where she desires change and help from Pastor but those are only monents and then she goes into rages and starts yelling and cussing at people. Everyone is trying to back off and let her deal with what she needs to. People are worried that she will have an affair (while not thinking clearly), and hurt her relationship with her kids.

Her husband beleives that she is bipolar. He told me that she did this once before when she was a teen (before he know her). Other friends that have talked to me about her keep telling me that I don't know her. I just know the person she wanted me to know. I think that is what she is telling them (That she had been putting on a show), but we spent hours and hours every week talking for the last 2 years, and she confided in me about many things. To me it seems like she suddenly started feeling this strongly, and she now sees feelings from her past and contects then. They may actually totally unrelated. Like she Has been a stay at home mom by choice for about 6 years, and now has a job and says she has hated being home with the kids and blames her husband for forcing her to stay home. But over the last 2 years there were times when he has encouraged her to get a job to get out of the house and do things (these are times she told me about and said she just wanted to be with the kids).

Her husband has been very very involved with her Doctors. He is actually the one how got her the Doctor that was finally able to help her. I think it is really hard for him. He loves her so much, and keeps trying. He also has been trying to hide this from people, except from her close friends that love her any way and want to help. He is also an Active Duty army officer, and now full time mom. He is starting to have trouble with the kids (ages 4, 5, 8, & 11), they don't know what is going on and feel abandoned.

Thank you for your posts.

Regular Member

Date Joined Jul 2006
Total Posts : 245
   Posted 4/20/2007 2:45 PM (GMT -6)   
Please do not take this wrong but it sounds like she has allready been judged by church members & friends. I know you are worried & you are a good friend for that. I can tell you there is times in life when you don't want to hear another word about god or you feel like you could just scream. I personally do not feel this way but have in the past when I had a baby son die at the age of 7 days old. It took me a long time to even want to hear the word god. You also have to understand that having lupus & having to adjust to the illness could have sent her into this. Please do not think I'm terrible, I'm just letting you know how my mind worked at the lowest point in my life, Who knows it could be hers. Just please do not judge her in this & try to let her know you are there for her.

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 4/21/2007 4:55 PM (GMT -6)   
Hi Becci,
   I'm so sorry to hear about this sudden change in your friend. This must be hard for you since you were so close and she isn't letting you in right now.
   Like the others said, it would be hard to say what is causing her to make these lifestyle changes, whether it be meds, lupus, or her own personal issues.
   I know someone who did the same things your friend is doing and she was a preachers wife but, she doesn't have lupus. In her case, she married at a young age and was under alot of pressure as a preachers wife and had so sow her wild oats. Once she got that all out of her system, she remarried, got a degree in teaching, got back in another church and she's very happy now.
   I hope your friend will get the help she needs if it is a medical problem or if this is a wild hair or some other deep issue she has been dealing with, maybe she will get it out of her system soon.
   Hang in there! I'm sure you are very worried about her. You are a good friend to want to help her with this. I'm sure she knows how lucky she is to have you as a friend. I'm sorry her husband is going through this as well. Please keep us updated. You all will be in my thoughts and prayers.
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Regular Member

Date Joined Apr 2007
Total Posts : 81
   Posted 4/22/2007 8:16 AM (GMT -6)   

Hi there,

I think a few words you wrote initially count for a lot "waking up from a coma".  Maybe your friend, after being unwell for so long and then finally getting the correct treatment and help is now living her life to the fullest in the way that she personally feels is right for her.

That kind of life it isn't right for you and for us here reading about it.  Thing is though, drinking hard and smoking - who knows what really - can and do have a huge impact of our brains.
The feeling that she only ever did what she was "supposed" to do by others e.g. go to church, stay at home, be a mum and all of those thing meant maybe to her that she wasn't being her true self.  Not saying being the way she is now being her true self, but she is totally rebelling isn't she ?
We all know that sometimes we can feel so alone.  Not only with an illness of any type, but that we are taken for granted in our lives.  We get on with things the same way every day and then - snap !!  We kick up a bit of a fuss and we feel better.  Things might change for a little time but then normally go back into the same routine.
By getting totally away from all of it, your friend seems to be shutting out the chance that she will be forced back into the life she so desperately wanted to change. What is expected of us and what we really want to do are so very diferent.  We all need to be heard.
I do so hope that things improve for her and that you or indeed her husband can sit her down and have a long and meaningful talk with her.  Just face to face, not involving other people, just to listen to her and actually "hear" what she is saying.  
Take care
goldenwings  yeah   
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