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I would love some "real world" advice form those who have been through this as opposed to physicians telling me childbirth "isn't a good idea" with no evidence to back it up even though I have been in remission for over 3 years and and am doing great clinically with GFR of 70, Creatinine of 0.7- 1.0, ANA of 10 and dsDNA of 1:40- 1:160. Thank you in advance!
Im so sorry you even have to ponder that. But after reading these responses, my take away is they seem to prove out something I told my own daughter…
That whatever decision you make will be the right… read more
since having my 6 doses of cytoxan ive had a really hard time urinating. Like i have to sit there and really cconsintrate and wait for the urge. even when i have to go really bad and nothing will come out. Its like the muscle isnt working and my urge isnt working. Its really hard to explain. But its causing me pain bc when i have to go really bad and cant it hurts. Nothing is blocking it its just like my brain isnt grtting the message to my bladder that i have to pee so tge muscle wont work. And… read more
Just a heads up, I drink water all the time and my doctor sent me to Er. My sodium levels were way to low. They wanted me to decrease to 32 oz. in a day. I chose to salt everything so I could drink… read more
Hello, I start my cytoxan infusion in two weeks for nerve issues. Is there anything to look forward to.? pros and cons.
Thank you
thank you for your answer
I haven't had a monthly period since a really bad flare that started in Jan of 2015. I feel better now but no periods still. Doctors cant figure out why. Has this happened to any women out there? What did they do for you? I am only 40 years old.
I haven't had a period since i first started Plaquenil. Before I started taking it I was very regular. The doctor told me it wasn't the medicine but I don't believe it
Has anyone done rituxan (rituxmab) treatment for lupus nephritis in addition to the normal everyday lulupus nephritis medications? I just want to know about only this medication. Thank you
Not offended at all. I've been saying ineed to move back to Europe for years Lol. Yeah its costing me ~$3800 and that's the estimated price right now so I'm sure it'll end up being higher 😑
How many on here suffer from lupus nephritis? If so what are your current treatments. My symptoms right now include lower body edema and high blood pressure. I am taking cyclosporine but want to seek out other treatments with my nephrologist. What are your symptoms and other medications that you take for a nephritis?
I've had edena in the past. My doctor has me on Maxide and Plaquenil. It works very well for me
I have some questions as to those with severe SLE. I’m supposed to be going in for my second dose of cytoxan sometime this month and I’m very unsure if I would like to continue. I recently had a really bad flare up and had a seizure, I was sent to the hospital where they dosed me up on lots of ‘medication. They had me on mycophenalate(cellcept) but took me off because it was affecting my liver. They then decided to give me the first dose of cytoxan 500mg. After being released and coming back… read more
Maybe try to continue it? You’re taking a very low dose, max is 1000mg. Honestly for my ILD it was a wonder drug. It mostly makes you feel like shit But can also cause infertility in young women on it… read more
RI was diagnosed last week with hypogammaglobulinemia. I'm trying to figure it out. The only thing I know is what the nurse said and that's that I have it. I know they are in the process of trying to get the IVIG approved. Any information about treatment, supplements, diet and whatever helps you is greatly appreciated. And please share your first IV infusion experience. I'm just trying to find my way.