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Hi, My name is Stef. My Niece was diagnosed with Lupus at the age of 14. She is now 18 and has stage IV and V of Lupus Nephritis. She began her treatment today:mad: I'm scared. My sister is a mess. I am just not sure I totally understand what this means. Will it never go away? She has to take cytoxan once a month for 6 months. She can't have children? Ahhh..i'm frustrated..feel helpless and so sad. I hope that I can better understand all of this with all of your help. Thank you :)
 

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Dear Stephenee,
I am not very informed about Nephritis, but I am sure other people here will be along to help you.
All the Best,
x Lola
 

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Hi Stef,

Welcome to the forum, although I am sorry to hear of your niece. It is tough to have severe lupus at such a young age:(.

Lupus is a chronic condition, so your niece will have it for the rest of her life. That doesn't mean though that it will always be this bad. The aim of the cytoxan infusions is to stop the progression of the kidney damage and to get the disease back under control. It usually works quite well and she should feel better soon.

Sometimes with severe stage 4 or 5 nephritis the kidneys do go on to fail completely. If that happens then your niece will need dialysis and would be eligible for a kidney transplant. Kidney transplants are usually very succesful for people with lupus. So, even if the worst happens, there is still hope.

There is a risk that having cytoxan infusions can trigger an early menopause, hence the risk of not being able to have kids. But at 18 the chance that this happens is pretty small. It is usually women in their 30's and 40's who have premature menopause from cytoxan. For your niece there is a good chance that once the treatments are over and the lupus is under control that her fertility will return. If it looks like she is going to need repeated cycles of cytoxan she might want to talk to a fertility specialist about the possibility of collecting and freezing her eggs (or embryos if she already has a long term partner). Even if she needs a kidney transplant it may still be possible to have babies. These days it can happen, and we've learnt which anti rejection drugs can be safely used in pregnancy.

So, your niece and your sister are in for a tough time in the following few months, but there is good reason to hope that there are also better times to come.

Feel free to ask any questions you may have, and of course your niece and sister are also welcome to join. We have a special forum for teens with lupus. Your niece isn't alone:blush:

X C X
 
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