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Thinking Positive
New Member

Date Joined Jun 2011
Total Posts : 1
   Posted 6/13/2011 10:56 PM (GMT -6)   
Hello Everyone :-)

Its been almost 3yrs since I first got hospitalized because I started feeling sick. My first symptom was that my eyelid started getting swollen and my eye would hurt every time I would look sideways well long story short I went to the ER thinking it was something with my vision rolleyes but when the Ophthalmologist seen me they said nothing was wrong confused so all they did was draw blood out and send me home which got me a lil worried and wondering what could it be confused so when I get home I got called from the hospital that my blood work was abnormal so they needed to admit me into the hospital ASAP so I went back to the ER and got hospitalized started getting all kinds of test done I even got a bone marrow because my Dr thought it was Leukemia sad the results got back and luckily there was no cancer and I was apparently good, I was in the hospital for 3 days until I got released, unfortunately after that day I started feeling very weak, my joints started hurting, I started getting shortness of breath which got really bad to the point that to cross from one side of the street to the other I would feel like if had run 2 miles sad I went back to the hospital for a check up and thats when I first heard the word Lupus confused the Dr said I had some of the symptoms and that some of the test I got done had came out positive but that he couldn't officially say I had Lupus because there was more to it and that Lupus was very hard to diagnose but that I had 3 of the main symptoms cry ever since I started on Prednisone, Imuran and Plaquenil and it really did help but recently my doctor decide to get me off Prednisone and lately my joints hurt a lot cry my feet get swollen, my hips hurt that It makes it hard for me to walk and not only that even my eyelid gets so swollen it seems like if someone hit me and to top it off its not just my eye now its my lips too sad I just dont know what to do to make this things better confused the worst thing is i was on disability but since its been a year I dont qualify for disability anymore and now I need to start working I have rent and a car to pay and with these symptoms I see it hard for me to find anything cry any advice anyone confused

AZ N8ive
New Member

Date Joined May 2011
Total Posts : 11
   Posted 6/14/2011 12:35 AM (GMT -6)   
Maybe your Doc will let you take prednisone, less for awhile, if he/she knows you need to work? To be able to pay bills, including doctor bills!
Try having an atty file SSD foryou?
Just few quick thoughts! Hang in there...

New Member

Date Joined Jan 2011
Total Posts : 12
   Posted 6/16/2011 5:27 PM (GMT -6)   
Hi, have you looked up "Odema" - i've suffered with Chronic Urticaria/Hives for a few years and with it comes a lot of painful swelling, which is hot to touch and aches.  It came up daily, anywhere and everywhere, face, arms, legs, feet, hands, joints - literally each day it can come up anywhere.   It is Angio Odema - have a look and see if it could be that and then you may find a connection or what may be causing the Odema.

Good luck poor you, wishing you better confused

Post Edited (unhappyhen) : 6/16/2011 4:30:19 PM (GMT-6)

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 6/16/2011 7:11 PM (GMT -6)   
I think you mean Angioedema? This is an allergic reaction.

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 6/16/2011 8:32 PM (GMT -6)   
Angioedema was actually one of my first symptoms. Took quite a bit of prednisone before the swelling was under control. Any more, swelling is still one of the first things that happens if I overdue my activity level. My allergist treated me for about 5 years before enough other symptoms became apparent and I finally ended up at a rheumatologist and the diagnosis of lupus was made. If you are experiencing worsening symptoms, it might be a good idea to go back to the doctor for more evaluation. Sometimes it takes quite a while and a lot of trial and error to find the right medications to keep the symptoms under control. Good Luck, I hope you start to feel better.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.
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