Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
I should introduce myself a bit. I am a 21 year old college senior. I've had health problems for most of my life but until recently the doctors didn't under stand why. They are currently testing me for Lupus and RA, but my Rheumatologist is feeling its more lupus than RA, however she wants to make sure she isnt missing something.
This whole thing started about a month and a half ago. I had an asthma attack which sent me to the hospital, where they gave me the treatment i needed, which included a steroid shot. Two days later i wake up my face is swollen, and all red. My mom even asked me why i was crying..i wasnt. So we went to the minute clinic and they said it was an unknown allergic reaction and gave me a stepping stone amount of prednisone at 60mgs. The face cleared up and so did a lot of the other problems i had that i ignored. Mostly my fatigue and my joint pain and the various rashes i get on sun exposed part of my body.
I went and saw my PCP the following week who wanted to get blood work started and recommended i saw a Rheumatologist. The blood work he ran showed high ESR, high WBC and positive ANA and he was still thinking it was lupus. My grandmother had it on my fathers side.
I saw the new doctor thursday and she listened to me for over an hour and gave her reccomendations. And is running additional tests. She wanted to start me on Plaquanil but due to my vision problems she wishes that i speak with my Opthamologist first for his advice. I also see a dermatologist to get a skin biopsy done to see what the rash on my hands is.
Overall, im just exhausted, my joints hurt a lot. I get headaches. My face has the butterfly rash on it. Im wishing the medical community worked faster and i could start feeling better. I have school to focus on and some days i find it hard to even roll out of bed for my classes in the morning.
^.^ Teu
This whole thing started about a month and a half ago. I had an asthma attack which sent me to the hospital, where they gave me the treatment i needed, which included a steroid shot. Two days later i wake up my face is swollen, and all red. My mom even asked me why i was crying..i wasnt. So we went to the minute clinic and they said it was an unknown allergic reaction and gave me a stepping stone amount of prednisone at 60mgs. The face cleared up and so did a lot of the other problems i had that i ignored. Mostly my fatigue and my joint pain and the various rashes i get on sun exposed part of my body.
I went and saw my PCP the following week who wanted to get blood work started and recommended i saw a Rheumatologist. The blood work he ran showed high ESR, high WBC and positive ANA and he was still thinking it was lupus. My grandmother had it on my fathers side.
I saw the new doctor thursday and she listened to me for over an hour and gave her reccomendations. And is running additional tests. She wanted to start me on Plaquanil but due to my vision problems she wishes that i speak with my Opthamologist first for his advice. I also see a dermatologist to get a skin biopsy done to see what the rash on my hands is.
Overall, im just exhausted, my joints hurt a lot. I get headaches. My face has the butterfly rash on it. Im wishing the medical community worked faster and i could start feeling better. I have school to focus on and some days i find it hard to even roll out of bed for my classes in the morning.
^.^ Teu
I was in your shoes around this same time last year. I was afraid, I had to go through a series of blood work before I was finally diagnosed with Lupus. I had all the symptoms you had-for years! And yes, I too, ignored them...I thought it was just my body and I was just aging, I'm 25 BTW. I had the joint pain, the butterfly skin rash, the fatigue sine I was about 14 but never did anything about until one day I woke up and could turn or flex my wrist. It was SO bad, the pain prevented me from starting the ignition in my car!! I was force to go to ER because I couldn't bare the pain anymore. The ER said it was tendinitis, gave me a splint and Naproxen and sent me on my way. A few days later, I had the same issue in my opposite wrist! Then a fees days after that, it was my shoulder joint! I couldn't even snap my own bra because of the pain. My PCP didn't know what was going on with me. It finally took a visit to the gynecologist to open up a new chapter in my life-weird, right? The gynecologist!? When tested for STDs, at first, I showed positive for syphilis, then a second test came back negative. My gyn told me that a false positive for syphilis is usually indicative of Lupus and she referred me to a Reumy. I am thankful that she caught on to that, because when I finally made it to the Reumy, just one look at my physical appearance and blood work, my Reumy started me on 40mg. She said my inflammation levels were so high that I could've ended up in the hospital with life-threatening conditions had I waited a few weeks later without treatment!
I know how you feel, once I was told that it may be "Lupus" I freaked out! I had no idea about the disease or what was going to happen to me. I wanted to hurry up and find out. I cried. I couldn't sleep, you name it! But I can say that once I was diagnosed and treated, I felt much better!
My advice, is to find support-here. For me, this site has been the best support!! And try to learn to accept a new way of living. If on predinose, limit salt intake and food intake because it WILL increase your appetite!!, vitamins, exercise, plenty of water, plenty of sunscreen when out in the sun, and take extra care of yourself. Get the hair and nails done regularly! I've been told-and it works-that if you replenish your body and appearance, you'll feel better and will avoid stress that you don't need!! I wish you strength and happiness,
Best,
Jess
The results this week showed vitamin d defiency, she said the number wad 12. So I am being put on a 12 week once a week supplement. I also have another lab sheet being called in with a chest xray attached, apperanrly my numbers are off there. And I have a steroid taper to be started after the blood work is completed.
I go back in November for a follow up. I see a dermatologist tuesday for a skin biopsy. I still have to bug my opthamologist about plaquanil. I have minor reservations about that. I have 10% retinal thinning in plaves in my right eye and I'm blind in my left. -.-
^.^ Teu