So i started cytoxan for the third time. I was having bad kidney pain and then optic nueritis hits. I am sick of being sick. I even got denied ssd with an attorny! How does someone work while throwing up poison? just another obsticle to jump through. Thanks lupus!
Try Allsup they got me approved wicked fast. Hope you feel better soon
Hi Ward - I am so sorry. I have had 2 rounds of cytoxan and they were awful. It is so ridiculous to remember those months - I just wanted to sleep all day, but every hour I had to get up & drink water & flush the toxins from my bladder - I never knew if I was tired from the drug or the disease or all the friggin up-and-down. So I really feel for you, thank goodness I wasn't throwing up too, so many times I could barely walk across the room. Keep pursuing the SSD, it will happen eventually, there are way too many obstacles they put up
Well the cytoxan side effects are down to a minimum but because they put me on 1000mg of steroids i feel like i am going through withdrawals. Stiff neck and bad pain in all fibromyalgia trigger points! My kids are telling their friends i have roid rage! I guess its a good halloween costume i dont have to dress up!
Haaa!
Hello ward,
My thoughts and prayers are with you on how your feeling and i hope you do feel better soon and members are able to help in a large way.
Love Terri :) xxx
My dr has recommended I start cytoxan infusion. I am just waiting for insurance to approve. He says it will be for a year. I am scared of this chemo and the side effects. Can anyone tell me whether this treatment is worth all this scariness.
Hello Selah,
I don't know anything about that infusin sorry but try not to be frightened but i do suggest you add you own discussion on the infustion as you'll get more feed back.
My rheumo as asked me if i want to start a trial for sjogren's with Rituxan IV infusins and i did a discussion on it and i got some good replies and on the 30th of this month i've got to let him know but i'm going to go for it, got nothing loose.
This link carries all the info on the drug
http://www.rheumatology.org/practice/clinical/patients/medications/cyclophosphamide.asp
This discussion on the site may also help you how members was also.
http://forum.lifewithlupus.org/forum/topics/cytoxin?id=6320638%3ATopic%3A123144&page=1#comments
Love Terri xxx
Hi Selah,
You should definitly start a discussion like tez said. But i have done three 6month sessions and was told that 6 months is the longest anyone should go. Dont be scared. Stay strong and eat lots of vegetables. You will be weak for a little while.
Hello ward,
Thanks for replying mate and i hope your feeling ok with your health?
Terri :) xxx
ward0818 said:
Hi Selah,
You should definitly start a discussion like tez said. But i have done three 6month sessions and was told that 6 months is the longest anyone should go. Dont be scared. Stay strong and eat lots of vegetables. You will be weak for a little while.