The Joy of Lupus. Pt 1

My personal struggle with Lupus nephritis.

Category:

People & Blogs

Tags:

• Lupus Nephritis
• systemic lupus erythematosus
• Kidney

[bmviola310]

i am 23 yrs old too and was diagnosed with 2 types of lupus 3yrs ago, i have Discoid Lupus and Systemic Lupus...my flares are mostly brought on by the sun. i HATE predisone as well girl! i have been on high doses for along time so i know how you feel. i take plaquenil, predisone, fosamax 2 protect my bones, cyclosporine cuz affects my bone marrow. i really like your blog cuz i know what your going thru. i wish you good luck!!

[Zhidalgo]

@bmviola310 I do not have discoid, only SL. Im sorry to hear that you are having a rough time. IM gonna state the obvious, STAY OUT OF THE SUN!> but since thats completely impossible, I know there are plenty of companies that make sun resistant clothes. I would google it and look at your options, and a hat never hurts get a fabulous one and rock it :) good luck, and thank you for following my blog :)

[bronxemsmedic]

In response to the Cellcept and the nasty side effect in has on the stomach, I had the same problem in the beginning. It was the most horrible pain in the world. The interactions that the medicine has with antacids made it impossible tio take thiose as it would defeat the purpose. But I continue to take Cellcept- I just take acidophilus in the morning with my morning meds. Pain all gone, plus no constipation or bloating from the iron or prednisone. I am currently in remission...good luck 2 ya

[Zhidalgo]

@bronxemsmedic thank you for your message, I have not taken Cellcept in a couple of years . 1. its very very expensive, and also, for me, the pain was just unbearable. I am now on Imuran and I have no side effects, so I take that.

[dooners2u]

I have been put on prednisone along with plaquenil, next cellcept too! You are so strong and in my prayers! I have followed you! Way to go girl! Sending hope for tommorrow!

[Zhidalgo]

@dooners2u Thanks for your words of encouragement! I am on alot of the same meds, but I cant tolerate Cellcept too well so they are going to put me on Imuran. Im waiting to meet with my doctors more, then I will post a follow up video. Did you know that I have a facebook page: The Joy of Lupus? if so, add me :)

[ilovenoy]

I have SLE and diagnosed with lupus nephritis also. I was on dialysis for 2 years and recently got a kidney transplant and my donor is also my boyfriend of almost a decade. Oh, I also live in NC. Stay strong!

[loriwho89]

Hello. I was diagnosed with lupus nephritis as well and i have so many questions. I was wondering if i could add you on facebook. My name is Lori Gaeta. I am 20 years old and had lupus for almost 3 years. I used to weight around 126 and right now i'm 160. My legs and feet are huge and my face is super swollen. Right now they have me on cytoxan to prevent kidney failure. Turns out only 50 percent of my kidneys work. I also have anemia and hypertension. I just feel soo alone.

[MELODYAMOUR]

Hello ... Call me I have some info for you

646-884-3225..

[Zhidalgo]

@TheMuneka6 I got the book on Amazon.com. you can probably find used copies for cheap. However, be careful. It is tricky to put your self on a strict diet not only bc you crave food, but bc it can actually be harmful if its not the right thing for you. Ill say that during the time I did the diet wich was over a week( its really really hard to keep it up) I felt better than I had in a very long time, I would just be careful, but if you do try it, PLEASE let me know how it worked out for you. GL

[GladstoneTV]

i was talking to this girl that had lupus. i miss her. stay up ma. i want to start a charity or foundation for lupus. i want to know how to start. i will pray for you. and you are very pretty

[carolharden7689]

Thank you. I was diagnosed when I was 5 1/2 months pregnant. My son had neonatal complete heart block because of it. At two months he had a pace maker put in. I now have no insurance and am wondering if my kidneys are acting up. This is a very unpredictable psychotic disease. I hate it.

[ILUVHORSES1981]

you are absolutely adorable, I have Lupus, I was diagnosed with it last year after ten years of unexplained symptoms and many many doctors. I was wondering is it the typical Lupus Nephritis that you have? What are the symptoms for that? I am just curious because recently they found protein in my urine and I have been getting really puffy legs/ankles/feet. Also my bp is elevated...I wish you the best int he future and I hope you feel better!!