NEW TO THE BOARD I HAVE LUPUS

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DENISEK319
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/18/2008 6:11 AM (GMT -7)   
HI MY NAME IS DENISE, I'M NEW TO THE BOARD . I JUST WANNA TO SAY I HAVE LUPUS FOR OVER A YEAR NOW. I ALSO HAVE AUTO AMMUNE HEP AND I HAVE SUGAR PROBLEMS.  SOMETIMES I NEED PEOPLE WHO HAVE THE SAME THING GOING ON TO TALK TO . THIS IS THE FIRST TIME I WAS EVER IN A BOARD LIKE THIS... SO I HOPE I CAN MAKE SOME FRIENDS
WHO CAN UNDERSTAND .
                                             GOD BLESS
                                               DENISE yeah   

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/18/2008 6:34 AM (GMT -7)   
Hi Denise and welcome. I'm sorry about your diagnosis - it can take a while for it to all sink in. I'm glad you found us - this is a great forum and we have very supportive members here. I'm sure you'll make some friends here. We also have a chat feature that some of the people use.

Feel free to ask any questions or just vent if you are having a bad day or a flare. I look forward to hearing more from you. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



DENISEK319
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/18/2008 7:36 AM (GMT -7)   
THANKS SO MUCH  FOR MAKING ME FEEL WELCOME HERE.. MY FLARES ARE OUT OF
 CONTROL .. MY PLAQUENIL  IS NOT WORKING TO WELL FOR  ME... HOPEFULLY THEY FIND A
DRUG THAT WILL WORK WITH ME.
                                              DENISE

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 6/18/2008 7:41 AM (GMT -7)   
Hi Denise,
 
Welcome to the forum. I"m sorry you're not having success with Plaquenil.  For many people it takes some experimentation of different combinations of meds, before the right ones are found.  There are lots of options for you out there.  How is your relationship with your rheumatologists and specialists?  Are you taking any other meds?
 
I look forward to getting to know you!  This is a great place to share and ask questions. 
 
Blessings,
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

34 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, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


DENISEK319
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/18/2008 8:07 AM (GMT -7)   
 HI GINNY..
     I HAVE GREAT DOCTORS , THEY ALL TRY TO WORK TOGETHER..
  I TAKE ALL KINDS OF MED'S
  LYRICA , ZOCOR,VITAMIN D, PREDNISONE,OMEPAZOLE,ATENOLOL,ACTONEL,
  AND TWO DIFFRENT TYPES OF INSULIN  AND SOMETIMES SOME PAIN PILLS
 IF I'M IN ALOT OF PAIN.. I HAVE FOUR DIFFRENT DOCTORS.. I GET TO GO TO MY LUPUS DOCTOR
 ON THURSDAY.. I GO EVERY MONTH BECAUSE OF ALL MY PROBLEMS...  RIGHT NOW THE LUPUS IS ATACKING MY HEART THEY WANT TO GET THAT UNDER CONTROL... BUT I'M SURE I WILL MAKE IT
                                                            GOD BLESS
                                                              DENISE

joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 6/18/2008 8:54 AM (GMT -7)   
Hello DENISE, I also want to welcome you to the forum. You sound like you like your docs. that is a big plus. I'm sorry you are not doing well with the plaq. I hope they can get things under control for you. Good Luck tomorrow. Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/18/2008 10:56 AM (GMT -7)   
Hi Denise,

Adding my welcome!! (((((( Denise )))))))) It sounds like you are dealing with A LOT right now. I hope your doctors find a perfect combination of meds/treatment to get everything stable.

Keep us posted!!

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, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 6/18/2008 8:56 PM (GMT -7)   
Greetings and Welcome, denise!

I am so happy to see you have joined! This is a great website and lots of the members have such great information or they can help you find the answers! I am happy that you seem to like and trust your doctors. Good luck, and I will keep you in my thoughts and prayers!

Audrey
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/19/2008 6:12 PM (GMT -7)   
Hi Denise,

I'm glad you have found us, there is a *huge* amount of support and fellowship available here!

I did want to mention that normally in a forum like this a word in all capital letters is considered shouting and bad manners. So it's one of our little rules that we avoid doing the all-cap thing. Though you'd want to know before someone gets upset at you!

What other medications besides Plaquenil are you on? There are a handful of common meds used to get lupus under control, hopefully you have good rheumys who can help you out so you feel better soon.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


chrissy
New Member


Date Joined Jun 2008
Total Posts : 7
   Posted 6/22/2008 2:22 PM (GMT -7)   
Hello Denise, I'm also new to the board. This only my second day. I'm not new to Lupus it's will be 14 years in Sept. I do like to read how other deal with some problem I have. I have been told I have a mild case, but after read the board I cansay that I am very lucky. I never thought I'd say that about Lupus. I am on Plaqunil Vit D , B. I get blood test done every 6 month before my rheumy visit. Does anyone else who takes Plaqunil get a special eye test. I get one once a year to seei if it has done any damage to my eyes. After almost 14 years ther is no damage.l Good health to all. uni-corn

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 6/22/2008 4:08 PM (GMT -7)   
Hi Denise,
 
What part of your heart is involved right now?  It's pretty common to have that happen, with all the inflammation going on.  I have mitral valve prolapse caused by inflammation.  with lupus the condition is called Libman Sach's Endocardi***.  Mine is pretty much gone now because we've hit it hard with prednisone.  I get an echocardiogram every year to make sure it's not coming back.
 
If you have any questions about it, let me know. I might be able to help.
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

34 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, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 6/24/2008 12:49 PM (GMT -7)   
Denise, I'm sorry that you are having so many problems... I hope you can get it all under control soon...

DQueen
Regular Member


Date Joined Jun 2008
Total Posts : 90
   Posted 7/21/2008 11:40 AM (GMT -7)   
Hi Denise! Welcome to the forum. I'm sorry you are having so many problems right now. I had the same kind of issues a couple years back. I went into congestive heart failure and kidney failure all at once. I am doing much better now, thanks to wonderful drs and the right combination of meds. You are lucky to have good drs as well it sounds like. I'm sure that they will make things better for you. It's good that they have found these things and are treating them now. The sooner the better, especially with problems like yours. Hang in there. We are all thinking about you and praying for you.
Lots of Love!
DQueen
 
 
 
Lupus, Rheumatoid Arthritis, High Blood Pressure, Anemia, Congestive Heart Failure, Kidney Failure


DQueen
Regular Member


Date Joined Jun 2008
Total Posts : 90
   Posted 7/21/2008 11:42 AM (GMT -7)   
Sorry it took me so long to welcome you. I wasn't trying to be a snob or anything, its just been awhile since I've been to the forum. Hope everything is going well for you.
Lots of Love!
DQueen
 
 
 
Lupus, Rheumatoid Arthritis, High Blood Pressure, Anemia, Congestive Heart Failure, Kidney Failure

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