View Full Version : hello. im new to this site.

08-13-2012, 09:01 PM
Hello everyone.
I'm new to this site. I've been living with lupus for 6 years but only recently have I been getting complications with kidneys. Kyle rheumatologist and nephrologist, though they are great doctors, have different views on how to treat my lupus. The nephrologist wants to put me on cytoxan but my rheumatologist says that staying consistent with cellcept, I won't need to go onto cytoxan. What should I do? I have read that cytoxan affects your ability to bear children. And I would like to have kids one day. Should I listen to the nephrologist and go on cytoxan and risk becoming sterile, or risk staying on cellcept and possibly go into renal failure/ dialysis?

08-14-2012, 03:46 AM
Boy, that is a hard question to answer. I wouldn't know what to do either. Maybe you should get another opinion.
I am sorry, that I am no help at all.


08-14-2012, 04:40 AM
that is a very hard question indeed.

can i suggest that you go to your primary doctor.
ask for a long appointment.
take the time to discuss it properly.

this doctor should be able to help with answers to your concerns.
as he is not pushing either option.... he should be able to offer unbiassed advice.

also welcome to the site.
(wow, what a first post).
please keep us informed on your desission, and its reasons.
we are here to help each other, i wish i could offer more!!!!

08-14-2012, 06:15 AM
Sorry I can't help with your question, but welcome to the site. Look forward to reading more of your posts.


08-14-2012, 07:44 AM
Hi kasemsouk, and welcome to whl forum. My opinion (for what that's worth in today's modern economy... tic) is the same as the others. Another opinion, preferably your pcp, since they should know you rather well, would be desireable. Your decision would be based upon considering all the doctors' opinions, and where you are with your kidneys, ie: How involved they are, and how well they and the lupus are responding to the cellcept... Have the rheumetologist and the nephrologist talked to each other yet? To your pcp? Also, modern medicine has made great inroads into being able to "harvest" eggs and "save" them for your later use, if necessary. It's not inexpensive by any stretch of the imagination, and if your insurance is anything like mine, it most likely won't cover the expense, or at the least the "maintenance" fees. But it is something to consider, if it does become necessary to use stronger meds. Those two handsome boys in my avatar pic are miracles of modern medicine, from similar, necessary means (cancer, in my case)...

08-14-2012, 09:00 AM
Went to see my family physician. He recommends that I get a second opinion as well. So I'm gonna be driving to the next town to see a different nephrologist. (The town I live in only has 2, and insurance only covers 1). I spoke with my rheumatologist and he says that yea cytoxan is a very strong medication, it has serious side effects, but it is the most reliable when it comes to kidney control for patients with lupus.
I am thinking about this long and hard. Doctor says that for people who have been on cytoxan, they are still able to have kids in the future. It is just a CHANCE that I may become sterile.
I have only come to a support group because I couldn't find anyone that u could help me with my concerns. I am really grateful for being able to find much a group. Thank you all for the excellent advice.

08-19-2012, 05:41 PM
hello and welcome i am so sorry that you have to make such hard decision i have and so has my daughter and she is now suffering with affects to her kidneys and has to see specialist. her bloods were not good. she has no children is single but wants them. so this is just another complication she to is very upset. hope everything is sorted for you hugs kim

08-22-2012, 03:36 PM
Hi and welcome to WHL.
Let us know what the new nephrologist tells you. It's very important to take care of your kidneys.

09-05-2012, 09:44 AM
This is a really big issue, and one I faced 20 years ago. I actually changed rheumatologists because my female doc (who I thought would be understanding of my hesitation to use cytoxan as I had just gotten married and wanted a child)tried to rush me. Talk through all options thoroughly..do what is best for your body and your life. Feel free to message me if you want to. Best of good luck to you.

09-05-2012, 10:06 AM
Hi and welcome to WHL. I have to agree with everyone else about the 2nd opinion. Please let us know how it goes

The Survivor
09-05-2012, 10:36 AM
Hello kasemsouk and welcome to the WHL forums!

I'm sorry to hear about your situation. I had to make a choice like that as well. I chose the cellcept and now I am on dialysis. But I believe I would be on dialysis anyways because the lupus was attacking my kidneys in the first place. I'm not saying that you should make the same decision. I just want you to know that there are others who had to make this life-altering choice and that you are not alone. I suggest that you really think about what's more important to you; the ability to have children or your kidney function. Of course this won't be easy. I wish I could be more help to you.....