Newly diagnosed

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Kadey
New Member


Date Joined Jan 2008
Total Posts : 4
   Posted 1/8/2008 12:46 PM (GMT -7)   
I was diagnosed with mild lupus in November-07.  I have been reading posts here since then and you have already answered alot of questions I have had, but this disease just has me totally overwhelmed.  
 
Since my diagnosis I have been experiencing the anxiety this can bring--and over some very odd things.  Recently, every time I get in the car I get this very overwhelming feeling that at any minute I am going to get hit by another car.  It plays like a picture repeatedly in my mind--makes my heart race and everything.  Does that sound odd?  I can make myself "overcome" it and just "ignore" it, but it is still there.
 
I have been under treatment since mid November and the Plaq seemed to start working after about 4 weeks _ my painful joints were hurting 2-3 days a week instead of everyday and the moring stiffness was gone.  For the past week and a half I have been having my joints start to ache again everyday and morning stiffness came back.  Today I woke up and all of joints are painful that were  bothering me on my inital diagnosis, but now also a couple new joints are aching, too.  Couldn't make a fist until after my shower, but still very mild swelling.
 
I am familiar with the flares since my daughter has JRA and I am comfortable about when to call for her, but now that is me, I question calling too soon. I'm not sure the Plaq. has had a full chance to kick in yet, so I don't know what to think.  I didn't intend for this to be so long, sorry.
Lupus 11/07,hypertension    7yo duaghter with JRA
 
Meds:  Plaquenil 800mg, Lisinopril


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/8/2008 5:54 PM (GMT -7)   
Hi Mom . . . .

I think it would be fine to call your rheumatologist (is that who you are seeing?). They could easily add an anti-inflammatory to your meds. . . and you are flaring so that would be appropriate. Don't let it go too long it can take more meds to pull out of a worsening flare.

I have to stay on 600 mg plaq + 600 mg ibuprofin 3x/day. I will have spells of feeling fairly well, but if I back off on the meds, I will flare again. Every couple months, I flare anyway and the doc is working with me on using a prednisone taper to see if that will help.

It seems that we each take a a fair amount of time to figure out a good med routine.

I hope you feel better soon.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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texasrose
New Member


Date Joined Dec 2007
Total Posts : 14
   Posted 1/8/2008 7:01 PM (GMT -7)   
Mom, hang in there. It will be o.k. I'm with Rosie call the doctor and see if they can help. I've had Lupus for 13 years and honestly other than being tired, stiff joints and some other things nothing serious happen until this year so with that I considered it a blessing. However, I would rather do without where I am now. Hang in there. :)

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/9/2008 7:47 AM (GMT -7)   
Hi mom and welcome. I'm sorry to hear about your recent diagnosis - I can relate to how overwhelming it can be. I remember when I first got sick and lupus was mentioned, I felt completely overwhelmed and pretty scared too. Coming here and joining the forum has helped so much. I wouldn't cope as well as I do without all the people here. It's a real relief to be able to come here and be among people who truly understand what you are going through. I'm sure you can tell from reading the forum that we are very supportive of each other.

I agree with Rosie and texasrose about calling your rheumy, especially since things are getting worse for you. I also struggle with when to call my rheumy and sometimes I try to ride things out when I should probably call. Your rheumy might want to add something to help you be more comfortable and to hopefully stop you from going into a flare.

On a side note, I have a 10yr old son who has some kind of arthritis or connective tissue disease. We've been struggling to figure out what he really has since he's been 7. He's had a positive ANA on and off and his sed rate is always high and he has some other labs that are off. Specialists can't agree what is wrong with him, so we're still floundering in the dark a bit, but at least some of his symptoms are being treated.

Please feel free to ask any questions you have - being newly diagnosed can be pretty overwhelming.

Take care and I'm glad you joine us.
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; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/9/2008 9:37 AM (GMT -7)   
Hi Mom,
 
Welcome to the forum.  Oh yes, anxiety is a major player in this disease.  I struggle with it too.  I get the obsessive compulsive thoughts as well.  It's all part and parcel with anxiety, to have those uncontrollable thoughts that just drive you nutty.  It's totally normal.  What you need to do is get that anxiety under control.  Doing it with medication is common, but if you can do it drug-free, what an amazing accomplishment. 
 
Check out this link.  This website has been instrumental in me being able to taper down (and hopefully off) of my anti-anxiety medication.  Many of which are very addictive.  I even had an opportunity to talk one on one with the wife of the founder of this company.  They live in my city, so it was handy! Lots of brilliant information and encouragement here.  Here's the link..
 
 
I know how hard it is to have this diagnosis, and NOT be anxious.  I think it's perfectly human and reasonable to have these feelings.  We just need to know how to control them and not let them take over our lives.
 
All the best, talk to you soon,
 
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

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Kadey
New Member


Date Joined Jan 2008
Total Posts : 4
   Posted 1/9/2008 2:22 PM (GMT -7)   
Thank you for all the welcomes.  It really helps knowing that what I am experiencing is normal for this disease. And knowing I can talk to someone who gets what I am going through!
 
I did call the rheumy today.  He wants me to go back on Naproxen (it wasn't helping before the Plaquenil so he stopped it) and is calling in Tramadol to use if needed.  This is just all so much.  I used to never even get headaches but 3-4 times a year and when I did--one tylenol would kick it--yikes.  I just remid myself to take one day at a time as I did when we went through this with my daughter. 
SLE 11/07,hypertension    7yo duaghter with JRA
 
Meds:  Plaquenil 800mg, Lisinopril


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/9/2008 4:04 PM (GMT -7)   
Hi Mom,
 
You are never alone here with your questions or concerns!  We're glad to be here for you, and for you to be here for us!!  We can all learn from each other.
 
I'm on Naproxen as well.  I take it for my period cramps mainly, but they do work well for headaches!  Takes the edge off my arthritis pain too. 
 
We do get what you're going through.  Isn't it great to have support you can count on!  I love this forum and everyone here ((((hugs))) to all!
 
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

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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