I have a friend who is too ill to participate in the group, but I thought I'd help her with some research and then let her read the posts. She's not a member here yet. Her Dr. has suggested Cytoxan, but from what she knows of the drug, she is so seriously ill, she doesn't think she could survive the side effects. What other chemo drugs have you taken for lupus, and are there some effective ones without near fatal side effects? Thanks so much for any help you can offer my friend. She also got diagnosed with MS a few days ago which explains why she has been so very sick with more than just lupus.
Cytoxan can be a life saver for critically ill- its the "big guns" so she may actually be better off Cytoxan has been around for many decades and the doctors are familiar with the side effects and how to manage them. Be careful in reading about side effects- Tylenol can be fatal too
Hi. I’m so sorry to hear about your friend. I have SLE and my mother-in-law has MS, so I’m familiar with both. I’ve never been on cytoxan, but I’m taking methotrexate. The first line if the pharmacy description says it can be fatal. The second line says it’s used to treat cancer patients and the severely, chronically ill. It scared me so much, I didn’t agree to take it for a long time. What changed my mind was all the other drugs and treatments weren’t working. I felt I’d eventually die from the side effects of all the meds before I’d die of a lupus-related illness. It’s a hard call to make. Your friend will have to seriously weigh the pros and cons. It sounds like she’s so sick she may need to try something else to help her, and maybe cytoxan is the answer. I would think the doctor wouldn’t prescribe it unless he thought she was in real need of it. And, as my doctor told me, if she really can’t tolerate it, she can come off of it. I’m not 100% sure about cytoxan, but that’s been my experience so far with methotrexate. I wish I could be more help. It’s likely nausea and vomiting may be the most common side effects as is the case with methotrexate. But, remember, most of the side effects you’ll read are rare occurances. It’s good to know what to watch out for, but I wouldn’t let that stand in the way of trying something that might eventually give your friend a better quality of life. I know it seems contradictory to take something with such bad side effects to make one better. That’s why it’s usually only used on those with acute illness. I hope someone on cytoxan can reply and give you some useful information. I can only lend support. Please keep us posted.
My daughter's Dr. wanted to use Cytoxan, but tested her IL 6 level first. Her IL 6 level was 10 times normal, so they started her on Actemra. The Actemra works and she did not need to go on Cytoxan. My daughter was bedridden at the time. Best of luck to your friend.
Sheila what an amazing friend you are!!! We all need support at this time and your friend is blessed to have you there for her! I’m on methotrexate. The outcome has been good, and am glad i decided to take it. I was scared at first after reading the side effects. I would try what the doctor suggests first and then be taken off if its not working for your friend as these medicines effect us all differently. Good luck to you and your friend
Thanks Stella, Poobie, Kim and Carolyn/
I was severely ill when they gave me cytoxan.
I had kidney failure (functioning at about 30%), congestive heart failure, peripheral neuropathy, pleurisy, anemia... Cytoxan was not all they gave me. I was on 9 drugs, transfusions, and cytoxan. The cytoxan make me feel bad in a different way- nauseous- and when the other drugs started working their magic, I quit the cytoxan. The normal course, at least at that time was 6 treatments total, one per month. I only did 2.
Bottom line, ya gotta do what ya gotta do to get the diseases under control.
FWIW, I stay in remission by getting enough sleep and avoiding all the foods I now realize I am allergic to. Here s a place to learn about fighting autoimmunity naturally, if she's interested:
Thanks Carla, I'm,sure my friend will appreciate your comments and the link a lot! I'll read it too.