Has anyone ever had Chemo treatment due to there lupus? I feel like no one understands & I’m thinking about stopping treatment because I feel as though is slowing me down. I go to college and I’m a single mother. I just do not like the treatment & all the meds. I’m leaning towards going to see a holistic doctor. So if anyone has any advice please share it would be great. :smiley:

Hi Sandra. I am not diagnosed with lupus but I do have fibro and suspect lupus.

The thing is, lupus can damage your joints and your organs. Kidneys for one. Eyes for another. Plus your heart. Another member on here stated that the chemotherapy treatments lupus people get are much lower amounts than people with cancer get. And you have to have something to stop the joint and organ damage. Holistic medicine is helpful in some cases, like for relaxation, but I don't think that it would cut the mustard for fighting lupus. Your load is hard, I know, but I don't think that quitting your medicines will lessen it.

Do you have someone who can help you out with your child like your mother or sister? Can you lessen your college-work load?

Obviously, the best person to talk to would be your doctor because I have zero medical training.

Here's thinking of you and hoping for the best,


Are you talking about cytoxin or methotrexate? ? I’ve been on both but cytoxin is full on intervenous chemo therapy, i did a 6 month round at the highest dose… it was rough, i was down for about a week after treatment but I’d get the decent weeks out of the month :slight_smile: cytoxin isn’t usually used unless you have severe kidney damage or in my case systemic organ damage due to untreatable connective tissues disease.

I've done the cytoxin and methotrexate, for me it didn't help for very long, the short time it did help wasn't enough to make it worth my while to continue as it made me very sick, and brought on a whole host of other problems, but that was me. I strongly urge you to talk to your doctor before doing anything. Everyone's lupus is different, and everyone responds differently to treatment.

Please don’t give up on traditional medical treatment because you are frustrated. I’m not ruling out other methods, like nutrition, acupuncture, etc., but your dr may come up with a medicine that allows you to go into remission.

Hi I have Lupus since 1999. I went 3 yrs having Chemotherapy Cytoxin every week for 3 months and then every 3 months for 3 yrs I did this. Everyone gets frustrated and everyone is different. Chemo is so hard but here it is 2015 and I am still here and my kidneys are still functioning, not 100% they fluctuate I am at 47%. Don't give up there's always hope!

If you want to chat or have any questions please don't hesitate to shout out to meQ

I’m doing a research study with biologics. Have you tried any? I know about one that has been approved for lupus.

I have 4 more months of chemotherapy and in a sense things get better trust me.I’m in high school and managing chemotherapy and school is quite a challenge

I did 2 years of methotrexate, I’m in remission, in my case it was so worth it

Yes, I was on Cytoxan (chemo) for 6 months when I was first diagnosed. Then I was switched to Cellcept and have been on it ever since. That was almost 12 years ago! Do not stop treatments, trust me!!

I have severely damaged lungs and liver from not being diagnosed for Lupus and 2 secondary autoimmune diseases=no meds. You need to discuss your meds with your doctor.

You can use an wholistic approach along with the lupus meds. I have adjusted my lifestyle to a more "healthy" routine since my diagnoses. I walk at least an hour every day, eat nothing but organic food, lost 50 lbs even on prednsone, take supplements such as vitamins and herbal teas when they don't adversely affect me with the meds that I'm already taking. It's your own choice, but be aware of what brought you to see the doctor in the first place.

You got to hold on.

My sister was given a natural product by a doctor at ohsu that keeps her lupus in remission. If you want more info let me know . Take care, Jeff

My rheumy told me the possible side effects of methotrexate aren't worth it unless you have organ involvement. If you do though you have to treat it.

Always always ALWAYS talk to your doctor about your medication. If you feel it isn't doing what it should, or if you feel it's making life MORE difficult, TELL YOUR DOCTOR. There are options, shifts, adjustments that are possible.

I am currently on two chemo drugs. My doc started me slowly on them, so I know exactly what they are doing to improve my life, and I refuse to forget that. I am on Imuran and methotrexate, along with prednisone. Because of the first two, I am finally starting to work off of the third. My painful days are much less now! And all with limited side effects.

But that's MY story. It's different for everyone. But the one who can do the most to help you find the right drugs to get the most out of life is your doctor. He or she knows (or should know) the ins and outs of the different meds, how to adjust them and what to replace them with. Please don't ever change your medications without talking to your rheumy!

Sandra which chemo medication ? Methotrexate Imuran or something else they have vastly different side effects for me so just wondering which one you are doing?

Yes I am on chemo for my SLE. Plus I am on benlysta which isn’t chemo but it is an immune suppresent. I am here if you need to talk! I’m in college too (online because I’m too sick to go the other route) but I know how frustrating it is to have friends who are out doing everything you want to be doing. College is supposed to be an exciting time and for us It can seem like we are being robbed of it. Don’t give up on chemo. I know it sucks and the side effects are horrible but unless it’s not working stick with it! If you wanna talk more I can give you my email address! I’m 22 btw! Hang in there!

I have Lupus, Sjorn. Syn., narcolespy, insominia, chronic anemia, & major depression which has been controlled with antidep. & Abilify which has been a miracle drug for me. Presidone stopped working for me......I take chemo., Benlysta infusions monthly (luckily I was able to get prescript. assistance $9,000 per yr. because BCBS did not cover it all - of course I have the copays which I struggle with). Since I had started the Ben. I do not have the horrible rashes so bad with the flareups and hardly ever get swollen joints like before. I get Procrit shots weekly ($1,200 - $1,000 ea. Without the Pro. shots to help bring up my blood counts up otherwise I would be so tired that I would fall asleep eating, driving, etc. These shots are my lifeline and I can work parttime (to help pay my medical) as a companion (just imagine). I am always dead tired but I try to think of it as a good tired., I take 22 pills per day the very BEST MEDICINE for me is gratitude. I thank God that I am able to be alive after the last 5 yrs. As a retired teacher, I just tell myself to HOLD FAST. Take care and Peace be with you, Helena, Secular Franciscan..

I did 2 cytoxan treatments then quit. I was already on 9 drugs plus seeing 2-3 holistic drs and the chemo made me feel awful. I didn’t want a confrontation so I just called and canceled my appointment and said I’d call back to reschedule (a lie).

did ok with it low dose of methtrexate.holistic doctor is very impprtant just as impprtant as lupus doc. He just gave me a suppthw other day for my reynauds. U need someone that believes in both