Hey everyone! Wow it has been a long time since I've posted on here! Glad to see that this site is still doing well and helping others. I am in the process of switching from my pediatric...
Thanks for the reply! I am not sure what I am going to do yet but it looks like I'm not going to get it for my safety. I know my doctor will definitely say no because she even said no to me using...
Hey Earnest! I have actually been on Benlysta for the last 3 months and it seems to be helping me. My energy levels have improved and I have now gotten down to 4mg. of prednisone. This is my lowest...
Hey Everyone! I know it has been a very long time since I have posted in here but I have a question about getting my belly button pierced and lupus. I am 18 and if I wanted to I could go get one but...
Thanks for all your replies. I am finally able to sleep, and hopefully that will be the only side effect. I'm still nervous about getting the swine flu even with the shot.. 7 people in one of my...
So there offering the H1N1 shot at my rhumeys office, and I got it two days ago. Has anyone else got their shot? Are you even worried about it? After the shot though I was not able to sleep. I went...
Hey everyone, I have a question about people with lupus and lymphoma. My doctor ordered a chest cat scan because my hands and arms have been turning blue (not raynauds, vascular problems that she has...
AIH mom, I know exactly how your daughter feels, its not fun at all. I have SLE lupus and I am now 16. I was diagnosed with lupus at 14. For the first year of my diagnosis I completely avoided the...
Thanks for all the great advice! If I do take the wish I am going to donate monthly and volunteer whenever I am able to. Im still not sure if Im going to take the wish though.. still deciding what to...
So first off, this week has not been to great for me but I'm pushing by. I hope everyone else is doing alright. As some of you saw I was in the newspaper, front page in the Review Journal about my...
So my mom has been trying so hard to get awareness for lupus, and she contacted the newspaper and the editor was interested in my story.. I ended up getting on the front page of the newspaper, just...
Hey everyone... I was having a lot of trouble with my Raynaud's and my arms were even turning blue from the raynauds. My dad really looked into and found this Herb called ginkgo biloba and it has...
Hey Everyone... I have been having recent symptoms of my back of my hands and my outer arms are turning blue... there is a sort of throbbing pain along with this and I have also been very light...
Hi lettuce, I just want to put in my input because I am 16 and suffering from both lupus and fibromyalgia. Actually when I was 14 I began having joint pain, fatigue, myalgia, and a year after that I...
Mine's bigsanfer because that is basically what my parents used to call me before I hit my teens. lol. When I was 2 I got on my big girl bike so I said me bigsanfer now! So its kinda my way of not...
I was just wondering has anyone here been in Remission from Lupus? If you have how long? and when did it begin? Just curious....
Thanks everyone for the reply, I appreciate your help! Today I am actually worse but Im starting to learn what is more related to lupus or fibro. I dont think my doctor knows much about Fibro but my...
Hey Everyone.. Im actually from the Lupus form but I have a few questions about Fibromyalgia again. I have been experiencing major skin tenderness everywhere. I can feel it while just sitting down...
Hi Singing... I know Im a little late for the post but I have a similar situation where my doctor basically told me to quit my dreams. I was diagnosed with lupus at 14, and I am now 16. I am now...
Hey Everyone, I have been having signs of Fibro and I thought I would come over to this form and see what you think. I actually have Lupus and I was diagnosed with that last year. I am only 16 and I...
Thanks for the reply ! The pain is a lot better now but my family and I just want to make sure. I have an appointment comming up and the ER doctor kept in touch with my doctor while I was there. I...
Hey Everyone. I have recently been experiencing heart pain and It got pretty servere the other day. So my mom called my rhuemy and she told me to go the the hospital right away.. So we did and then...
Hello everyone. Hope you all are doing well. I just wanted to ask if anyone has experienced stomach pain with their lupus? Lately I have had an upset stomach and abdominal pain and I know Im not...
Just wanted to let you all know I did make varsity basketball on my school team ! my family and I are very excited and I cant wait for the season to start. Ive been pretty good practicing everyday.....
Hey Everyone ! I just wanted to let you know that I have my basketball try-outs this Saturday!! Im so excited and very nervous. I have tried so hard, and fought every day to get where I am now at....
Hey everyone, I just wanted to share my thoughts about my lupus. I did struggle.. and I still am but I believe it is comming to an end, when I really know it isnt. I have been playing basketball...
Hey Everyone ! So like in the last post.. I noticed how there is no Lupus Awarness. And I want to get awarness. As most of you know.. Im only 15.. and its horrible how there is no cure for all of...
Hey Everyone.. I was just wondering when exactly is lupus awarness month? I know it is in either October or May.....
Does anyone else get hand numbness? I seem to get this alot. Im pretty sure its a symptom but I just want to make sure. I end up waking up early everyday because my hands fall asleep and therefore, I...
Hey Everyone.. Just thought Id update because I havent been on in awhile. I have now been on Methotrexate for a few months and its working great. I am now not as tired as I used to be and the joint...
Hey Everyone! just wanted to let you know the Disneyland trip went great ! It was lots of fun and I felt pretty good. The morning we left my feet were really swollen.. and I was really tired but that...
Hey everyone just wanted to let you know Im going to Disneyland in 2 days. Hopefully the sun wont affect me. I dont get a butterfly rash, but Im going to wear a UV Ray hat , jacket and sun tan...
Does anyone here have that? I am going to a gynotologist on Monday to check if I have this. I always have horrible cramps.. and I know it is normal to have cramps but mine are so bad that I end up...
I noticed I have one too.. but are they white.. like skin colorish or are yours brown? I also have one on my hand.. I brought it up to my rhuemy and she said not to worry about it. My mom is going to...
Thanks for the Reply! Yes, I have told my mom, and the dizziness gets better as the day goes on. And I have been keeping a log so that my rhumey will be able to rule everything out....
Hey everyone, I have a question on plaquenil.. I have been on it for about 2 months.. I have been on 200 mg. just started on 300 about 3 weeks ago. I have been very dizzy in the morning and extremly...
Is any one here from NV?? I have a rhumey here and she is okay.. but she has so many patients im pretty sure she does not remember me.. I think she is the only one.. she flies in from California...
Hey Everyone I was just wondering if any one had tried any certain diets with lupus? I have mild SLE. I still am not sure of why I got this. Im going to try to eliminate dairy from my diet for about...
I just wanted to tell everyone thank you.. the advice was great! I will update you on how it goes. Thanks!!...
Hey Everyone! My parents want to take me to Disneyland Cali this August for 2 days.. Im so excited! But we are all a little nervous about me having lupus. I am going to wear a hat and apply tons of...
Hello, I just wanted to let you know that I to get lots of pain in my hands, ecspecially during the nights and in the mornings from lupus. If I have time I try to take a bath everynight to help the...
Im having the same problem right now... I am tapering to 7.5 from 10mg of pred. Not fun at all.. Within one day I gained 5lb. in swelling and had very bad joint pain. Now I have been alternating the...
Hey Tcorr.. I just wanted to give you some of my support. I know it is not easy being so young. I am 15 and have been trying to get a diagnosis of Lupus for about two months, not that I want that....
Thank you everyone this helped me a and my family a big deal! We are going to try it out. Right now I am slowly getting off the prednisone and as i am doing this I am starting to swell up basically...
My rhemy wants to start me up on this drug now. It seems pretty safe, me and my family have been looking it up and we are going to put me on it. Is that a good choice?...
Thank you both so much! I will definitaly ask my Rhuemy about it when I see her next time! The pain is no fun, and I did get my Thyoid checked out... I apparently have some type of thyroid disorder...
Hey Everyone, One of my first symptoms were arm weakness and pain.. In my arms I seem to get shocking pains and whenever I move them a certain way or lift something they give that pain, or they...
So I have had most of the symptoms for Lupus... but I have never actually gotten a rash yet. Does the sun affect me no matter what? My rhuemy told me to stay out of the sun so I havent gone out in...
Hello I just wanted to let you know that Im 15 years old and I have been dealing with Lupus. I know I am not as young as your daughter but it is very rare for children so young to have Lupus. I...
So things are looking better! Im going down to 7.5 mg of Pred on Tuesday.. wish me luck. I just went down to 10 mg today but since I now have Shingles (which is very painful) I have to go down on my...