Reviews/Feedback:
Using Cyclophosphamide to treat CNS Lupus worked I was diagnosed with MS in the spring of 2002 and diagnosed with CNS Lupus, Antiphophilipid Sundrome (APS), Sjogrens Syndrome and Transverse Myelitis the following spring.
I had paralysis from the neck down and spent quite a long time on a high dependency ward then in the rehab ward. I couldn't walk and had to use a wheelchair and my consultant said that cytoxan treatment would take my immune system back to base level which would allow it to start the immune process from scratch. I also had 3 large doses of Methyl Pred pulses followed by oral Prednisolone. The Warfarin, which I also take for the APS, started soon after the cytoxan treatment finished the first time round.
I'm not sure how it worked but it did and when I had almost completed the treatment I was able to walk with the aid of two walking sticks. I did have the same treatment about a year later but since 2003 I have been able to walk although all my treatment is ongoing.
The side effects were not as bad as I thought they would be and I didn't lose my hair although I was very tired and weak after each pulse treatment. I had a tablet to control vomiting and although the vomiting was only occassional I did feel nauseous after every treatment.
When you read about all the side effects that can happen with cyclophosphamide it does put some patient off from trying the treatment. I wanted to walk so took the risk and it all worked out for the best in the end. If and when any other side effects become apparent I will cross that bridge then.
Hazel Edwards
sufficient i'm not sure if it worked, i had a flare all the way through...even when my flare died down, new things developed and one day i threw out all of my meds...dumb i know, they were expensive to replace once i regained my head.
splenic hemangiosarcoma-3/15/08 begin protcol
splene ruptured and was removed. protocol started 4 weks later. Our dog is still alive. 1/22/09.cyclophosphamide 25mg daily, piroxicam 10mg every other day, doxycycline 100mg daily.
Progressive MS Cytoxan My first dosage was Dec. 8th 2005. I am NOT SURE of the dosage I thought they said 1200mg. So far, NO side effects, just feel tired a few days after.
However, after 2 weeks my hair started thinning. I just went last week for my 2nd treatment so we'll see if more comes out in a week or so! Willing to chat with anyone currently trying or thing to try Cytoxan! It did NOT make me sick though ;)
My Cytoxan Experiance Well I have gone through 3 seperate runs of Cytoxan. Each time I had to have them, I was having a pretty bad flare, and I would do a 6 month treatment, once a month. I was given a great nausea medication before the treatment, and it really helped. I did get a bit tired, but in the long run it slowly would turn the flare around, and I would usually have at least 4 really "good" years.
it does help I have had lupus for 11 years and have had many cytoxan doses. It does help. it has helped me out of the woods many times. My kidneys are pretty bad off and if it was not for cytoxan and prayer I would probably be on dialysis. It does come with many side effects though - nausea, fatigue and a little hair loss, I become prone to infections, and have had some horrible rashes after treatment. But if you can tolerate the side effects it has helped me a lot.
Im a 13yr old ,I started this medicine when i was about 11 .They diagnosed me with lupus when i was 9 .Cytoxane makes me fell nousiated and sleepy but overall this has help me. I have problems with my liver,kidness and my lungs. I take cytoxan ones a month, we dont know when this is going to end but i keep working on getting better every day .My life has not be easy when this started my joints hurt and the other problems i have.I have to go with many doctors every month ,my friends always ask me why im apsent and i just say any thing to them .I also need to were a wig ,is ok with me i like to wear different hair stiles:-) but i have reconized that cytoxan had help me.
I took this medication for six months becauseof a severe case of Lupus. This medicine caused extreme nausia, hair loss, and fatigue. My hair eventually grew back brown, when my original color was blond. It did not cause reproduction problems. my wife became pregnant three years after my treatment. Overall, it was a success. No lupus flairs for almost three years.
I took this drug for many years without a problem.When i started taking 1000mg for the past 3 months,i lost my hair and my eyebrows/lashes began to thin.No side-effects when i took a lower dose.My health has been stable since i first diagnosed 9years ago.
I just received my 4th infusion of this med for treatment of my lupus as I've been on every other lupus medication out there with no help. I have lupus nephritis and we're hoping this stops it from progressing any further and to get me off of prednisone, which I've been on for YEARS. I'm not sure if I like it yet or not, haven't noticed too many changes yet and haven't been able to taper down on prednisone yet. It makes me very fatigued and nautious for the first week after getting the infusion and I've lost alot of hair, I also recently skipped my period and have been having a lot of hot flashes.
I have read all the reviews on this drug and I will tell you that I have been sick with Scleroderma for over 10 years. When I was first put on this medication I was only given up to 3 years to live. Well I was with this drug able to stablize my lung progression and get off of the medication. I am now however back on at a lower dose. I didnt care that I became sterile, changed by hair etc.. all I cared about was living for my son. Well I am proof that this drug does work. All of you that complained about the side effects well what would you rather have being alive or loosing your hair. I choose life.
helpful but...... yes it worked but it kills good and bad cells and throws your body out of wack. Makes you weak and could lose your hair