Good Morning my friends,

Well Vee... You were right!! I was diagnosed with SCLE yesterday. The rhume said I was textbook with my symptoms. She said the Anti Ro was a marker for the SCLE. I started on Plaquanil last night and I have to have my blood tests repeated every 4 weeks. It was wonderful going to a Doctor who could understand and believe everything I was telling her. She never even used the word idiopathic!! Yea for me!
She also diagnosed me with Hereditary Angioedema. This is something to do with C1 esterase inhibitor. I am lacking this in my blood which is what has been causing my throat to swell. I guess my body can't control swelling. I told her as long as the swelling stays out of my *** then I won't complain about it. Ha Ha.. Leave it to me to make a joke about life threatning diseases. Anyway I have to keep my epi-pen close to avoid big complications with this. She also thinks I might have Sjogrens also. She is going to continue the tests to confirm that.

I also noticed on my blood test that my C1Q binding assay was 4.4. It was above the normal range so the lab slip kicked up an explanation that involved renal impairment. Do any of you know more about this? I didn't notice it until after the appointment so I didn't get to ask her.

Anyway I am sad that I have this stuff but in a way I am happy because I know what's wrong with me and I know that I am surrounded by all of you. I know that you are all here and I don't feel alone in this.

Because I am kind of a chatter box and I happen to be a Paramedic, I plan to make a lot of noise about Lupus. I will tell everyone I know about it and hopefully this will increase awareness in a personal way for people I know.

Oh and one other thing. When I met my Grandma for lunch after my appoinment, she gave me a beautiful butterfly necklace. I will proudly wear it to remind me of all of you out there who have been in the exact place that I am right now.

Thank you

Jamie
Jamie

Jamie, Hi! It's a good news/bad new thing, huh?! I'm sorry you've gotten the problems confirmed, but I'm very glad you got to see such a fast-moving rheumatologist & are headed straight to treatment. Glad she's following thru on all other angles, too. (Gotta ADMIRE those thorough doctors!)

Because that "C1Q binding assay" seems to have something to do with kidney function, why be shy? Call! (I certainly would.)

Take extra good care, OK? Hope to see updates from you. All best wishes, Vee P.S. Were you warned about sun protection? People with anti-Ro can be excruciatingly photosensitive. I wear block, foundation with more block, hats, slacks, etc.

I bought 6 really cute hats yesterday. I am in 70 spf and ready to roll. I am VERY Photosensitive. It usually turns into a red world map on my chest in the summer. It started 2 summers ago and it was worst last year. Me being in such denial would just cover the ugly until it went away and then jump right back into a strapless. Ughh. What was I thinking? Hey just think... pale = less wrinkles. I am guessing with this huge flare this winter I will be more Photosensitive than before so I just plan to keep covered. I'm not sure how I am going to work it into my April trip to Jamaica but I will think of something.
Thanks again for everything
Jamie

Jamie, re: your upcoming holiday, there are sun umbrellas made. Some styles compact & fold, like rain umbrellas.

If you do venture out during daytime sun, consider staying close to shade, so you can duck & cover if you find the sun is too much. A full year after Dx, when Plaquenil presumably had reached max effect, I went kayaking W-A-Y out on a large lake, never considering that it would take me just as long to get back to shore as it did to get W-A-Y out there. :rolleyes:

Keep feeling better! Vee