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I HATE PREDNISONE!! but when I am feeling so terrible and in a flare-up, OMG it is fantastic....I feel so much better after 3 days on Prednisone. Tomorrow I go from 80mg to 60mg and will wean 5mg every 3 days....until I am off, or lets say if I am that easy to wean this time. Last time I was on it for 7 almost 8 months. I gained 50+ pounds. Took me just as long to lose the weight. Well, I wanted to tell all, I feel much better. I still feel terrible but a few days ago I was unable to function at all. I just hope I can get diagnosed with something just a basic connective tissue disease if nothing. So I can get some sort of daily treatment to prevent me from getting this bad. I do not think i can take the anti-malaria drug as detachment of the retinas and many eye problems run in my family. Also strokes in the eyes run in my family. OK well, I am happy I am feeling better, in a few days, the side effects from the prednisone will have me feeling not so happy....they are much better than not being able to function at all. :wave:

A question? How come some get diagnosed without any postive blood tests, and I have 2 different blood tests positive for lupus (ANA 1:2560 - SSA 68.4) and several of the other physical signs, 6 out of the 11, and I cant get diagnosed? I know the criteria, I brought that up to the doctors, they still insist on positive ana and positive anti-sm or anti-dna...without one of the other positive tests, they tell me no lupus....and I talked to several doctors at this teaching hospital....frustrating I guess....it is not like I am negative in everything...

Red cheeks butterfly rash
High Blood Pressure (160:100 & 158:110) it is good except during a flare up
Fevers 100.4 approx, Night sweats
Central Nervous System- Cognitive function-dizziness, off balance
Headaches, severe, and stiff neck,Vasculitis of vessels in brain, neck?
Swollen glands in neck
Raynauds Phenomenom
Eye problems, vision, blurry, depth perception. doubled
Very bad droopy eyelids during a flare up, and I had surgery 2 times for it
Hair loss, thinning
Severe pain in joints, bones, nerves, stiff to stand up from sit position
Debilitating Fatigue, too tired to move, not sleepy just extreme exhaustion
Tremors in hands, sometimes my head shakes neck shakes
Numbness in hands, lower arms, legs, feet,
Arms & Legs are heavy like I got concrete blocks tied to each arm
Muscles Myopathy, weakness and spasticity with clonus
I also had catarac surgery 3 1/2 years ago, a rare kind of catarac
I get mouth sores and throat sores Ulcers, I always said they ran in my family
My face had become stiff, disproportionate, one side drooped
??
anyone have any ideas?
I believe this sounds alot like lupus to me, every test you can imagine done on me otherwise is normal or not relevant, including MRIs
Each Flare-Up I am worse off on a daily basis with less recovery...it is like the flare never goes away just a little easier to deal with.





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