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29 March 2012 @ 07:25 pm
Howdy gang. Anyone on/ever taken Duloxetine? (aka Cymbalta) Its looking like that's the next med on deck for me and I'd like a little more info from people who have used it before before I'll feel comfortable giving the doc's the go-ahead. Cheers!
23 December 2011 @ 09:48 am
Hi there fellow lupies...I've got a question for you all about hair loss...lately my hair is falling out in handfuls, just from the running water in the shower...its getting kind of scary and I now have noticeably thinner (less) hair. I know I'm not the only one, so what do you or have you done about it? I keep my long hair tied up *all* the time because if I don't, it just falls out as I walk around. Help!

Thanks and happy holidays!
Current Mood: worriedworried
22 December 2011 @ 06:19 pm
Hello, everyone. I hope winter is treating you kindly. We've had a pretty mild one so far in northern IL which probably means we're getting dumped on later on in the season lol. I just wanted to come here to rave about the arm warmers I ordered from Sock Dreams. I bought the Microfiber Chenille arm warmers and they are absolutely heavenly. They are so soft and stretch very easily so I can hardly tell I'm wearing them, and they are also very cozy. I have a few pairs of microfiber socks that I love (I really hope my Aunt sent me another pair for Christmas!! =D ), so when I saw these I just had to get them. I'm so glad I did! They also have Microfiber Chenille fingerless gloves available.
11 October 2011 @ 10:32 am
Hi, I'm Alie. I'm 20 years old I've just recently beean diagnosed with Lupus Nephritis. I've been feeling better for a about a week. I was in the hospital for 16 days. I'm on a bunch of medications and I don't know. I don't know what to expect day to day. I understand what's happening in my body but I'm still lost. Emotionally I'm a wreck. How do I deal now?
Current Location: home
Current Mood: confusedconfused
07 September 2011 @ 02:04 pm
Hello, my name is Alicia and I thought that some of you might be interested in knowing that there is a clinical study now enrolling people who have skin lupus.  The study is investigating an investigational medication to determine if it helps to control skin lupus symptoms.  To see if you qualify for the study or to get more information go to http://www.lupusskin.net/sns.htm.  If you’re unfamiliar with research studies, be sure to read up on all the facts.  A good resource is http://clinicaltrials.gov/ct2/info/understand.

20 August 2011 @ 07:43 am
This morning I woke with a feeling of pressure in my left ear and some slight hearing loss. I tried flushing my ear out with Swimmer's Ear in case I had water trapped in my ear from showering, but it was no help. I'm planning to go to the urgent care clinic that is linked to my hospital/doctors in a few hours when I can drop my daughter off at a babysitter, but for now I'm just wondering if anyone in this community has experienced anything like this. Apparently sudden hearing loss can be related to lupus and other autoimmune conditions, but my Google Fu hasn't yielded any results that were especially helpful. Hopefully the doctor(s) I see today will be able to do something about it!
Current Location: New Orleans
Current Mood: curiouscurious
28 July 2011 @ 07:12 pm
Hello! I posted a while ago on here about my upcoming Rituxan treatment, it had all went well and not as horrible as I was imagining it to be, but something weird has happened about 3 weeks ago (I think around the time of my last treatment)

My gums were getting a little swollen for a few weeks and I didn't really notice it at all until one day when I was sucking through a straw, two of my teeth felt reallllly weird, and loose. So I looked into the mirror and discovered my gum had a black blister/scab on it and all the way down my top gum were swollen and red. I thought maybe I just wasn't taking care of my teeth like I should be and brushed it off as gengivitis. Ive had it before when I had braces, but there were no black blisters or anything like that.

So I regularly brushed my teeth twice a day and used mouth wash and even salt water (thought that would help but thats mostly for the throat) and still the blister is there, my gums would bleed when I brush them but its not as bad as before.

I finally looked online as a last alternative to having to go to the Indian Health Center to see a dentist (the only way I could, thank god Im enrolled) But when I was looking online I noticed one of the causes for swollen/bleeding gums was chemotherapy.....then I remembered that I had Rituxan and it all clicked.

Has anyone had a weird gum related side effect like this with ANY form of lupus treatment? Im seeing my doctor next week and will tell him about it, but if not then ill have to make an appointment with a dentist (not really sure how that would help though)
10 May 2011 @ 04:39 pm
So I saw my doctor today and he told me I should no be taking prednisone for this long amount of time, but every time they take me off of it my hemoletic animea flares up and...you get the idea.

So he suggested either taking my spleen out, or something called Rituxan. He said it was like chemotherapy, but...not. Its for treating blood disorders, and its a 6 hour sitting through an iv or something like that. I havent looked anything up on it yet.

But I wanted to know if ANYONE has/is taking this? I have no clue what to expect, apparently I will be able to go off of the prednisone after taking this.
10 May 2011 @ 12:44 pm
Today is World Lupus Day!

Are you doing anything special for today?

I'm going to try and stay out of bed as much as possible, maybe play piano.  :)

25 March 2011 @ 12:47 pm
Hi, I am a CFS/ME sufferer who has just created a community for sufferers of chronic illness' to share their creative works.

If anyone is interested in joining and sharing their work, the com is here: chronic_creator 

(Promotional post approved by mod/owner [info]javabean)