Diagnoise with Sle Lupus

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littleCookie
New Member


Date Joined Mar 2008
Total Posts : 8
   Posted 3/15/2008 5:22 PM (GMT -7)   
Hi I'm new to the HealingWell, and I can tell you it is so nice to see a website such has this one, I have SLE Lupus now for thirteen years, when I was first diagnoise I had no many doctors tell me that this was wrong and that was wrong with me they thought I was losing my mind, because the blood work would always be negative and it never got any better, well finally a doctor finally found out what it was! SLE Lupus, buy that time my body was getting full blow to the disease that I became paralzed and could not speak or do anything for myself, but stay in bed and pray to get better it was a long 5 months before the steriod finally kicked in the doctor could not believe that it took that long for steriod to kick in, that just how bad it was, I have not had any internal organ damage yet but I have had so many other things to go wrong, not only do I have lupus but also a l5 and l4 disc, two kinds of pain, it like my whole body hurts, I also drive school bus, I left a very good job working for the goverment in the business and clerical work only because working full-time just did not work out so well, but driving the bus help me in between my route, to just good home and try to rest, but arthur lol....just won't let you sometimes, now I'm going to have to go on disability because of the two illness and driving the bus is just getting harder.  Being diagnoised with lupus has really changed my life, it like this is a disease with a thousand or more faces, there is always something different going on.  But if anyone can give me some information about the disabilty thing, I live in South Carolina, it would be appreciated.  I'm also taking methotrexate and the folic acid and numerous other medication.  Can someone else tell me how the medication is doing with them.  I did not list all of the symptom, what I have listed is just the mild side of the disease along with hospitalization for days and weeks.
 
 

littleCookie
New Member


Date Joined Mar 2008
Total Posts : 8
   Posted 3/15/2008 5:44 PM (GMT -7)   
RX Methotrexate, Folic Acid, Prednisone, Warfarin, Hydrocodone, Lyrica, Zyrtec and flexeril

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/15/2008 6:00 PM (GMT -7)   
Hi Littlecookie, welcome. It sure sounds like you've been through a lot over the years. Glad you found us, I think you will like it here.

I don't know much about disability as thankfully I am still able to work a full time (32 hours a week) job. I was 40 hrs a week until this time last year, at first I didn't like the idea of losing that extra money but God has a way of working things out for us, doesn't he? It's been a blessing to a have a day off a week, it allows me to rest up. I am sure there will be other along shortly to help you with that, but just to let you know the boards can be kinda slow on the weekends.

I just took my 5th dose of Methotrexate and waiting for it to kick in and start helping my joint pain. I am take 3 2.5 mg tabs a week. What dose did your doctor start you out on?

Take care, feel free to ask more questions and keep us posted on how you are doing. You will be in my thoughts and prayers.
Stacie

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

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 3/15/2008 6:02 PM (GMT -7)   
Hello cookie, It's so frustering when you know your sick and the docs. don't know what is wrong. It's ashame that we have to get so sick before we are diagnose.I'm not on methotrexate but I know there are people on this forum that are taking it. I'm sorry you have been so sick I hope the meds. are starting to help you. Did they put you on plaquenil. Hope things get better for you. 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.     
 
 
 
 


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 3/15/2008 6:23 PM (GMT -7)   
I'm sorry cookie I forgot to answer your question about disabitly. I'm on disabitly my docs. help me with all the paper work. But I'm not sure if you are talking about ssd. or from your work. Your docs. should have put you out of work. 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 3/15/2008 9:29 PM (GMT -7)   
Hi cookie . . .welcome to the forum.

These meds are a trial and error thing . . . some have great success with the MTX and others less success. How long have you been taking it?? It does take a few weeks to really kick in. and sometimes the doc needs to adjust the dose to a higher level for it to really kick in. You will be the judge of how well it works. Are you feeling any better yet??? even a little???

I don't know much about the disability end of things . . . sorry.

There is a bit of info in "Lupus Resources" about disability. There is a link in my signature.

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

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


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/16/2008 11:37 AM (GMT -7)   
Hi cookie,
   Welcome to the forum. I'm sorry to hear you have been through so much over the years. Hopefully, now that you have been diagnosed your doctor will get you on a good treatment plan to help you feel better. Sometimes they have to try different meds to find the right ones for you.
   Getting SSD can take 1 to 3 years, sometimes longer or shorter. It took me just a little over a year. If you have good doctors pushing for you and a good lawyer maybe it won't take very long. I wish you luck with this and hope you get some relief soon. Please keep us updated and take care. You will be in my thoughts and prayers.
                                                                                Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/16/2008 5:29 PM (GMT -7)   
Welcome to the forum. I really hate to hear stories about people who have to get so sick before they get help. It is a sad commentary on the medical community! I got social security disability. Get ready for a fight and enlist everyone you can to help. Keep good records of you doctor appointments, hospitilizations, lab work, everything! My state senator was a big help for me! God luck and God bless you, Judy
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