So the drs tell me cellcept isnt working, and that i should consider
rituxan, after looking this treatment up on the internet, it seems very scary, has anyone out there had this drug treament and how did it work, it seem like there is a lot of reactions that could happen, and was there any preemptive testing done to keep reactions to a minimum???
any thoughts would be appreciated
Rituxan is very expensive, and several people have had their insurance companies deny coverage for it. So you might want to check with your insurance company to make sure they will cover it for lupus therapy.
Hopefully some of the folks who have had rituxan therapy will post to share their experiences with it.
no problem there, against all odds, im one of the lucky few who get very good treatment from the VA, i just have to watch for the people who are just there to do the daily grind and the ones who are there to care for people,
please if you have had experiences with Rituxan please share :lol: :lol: :lol: :lol:
I was wondering what dosage were you on for Cellcept? I had tried all kinds of meds....and finally went back to Cellcept; however, I don't know how involved your lupus is, etc.
I am taking 4 grams of Cellcept, and I am finally feeling better. I take a "cocktail" of drugs to keep me steady. I was never one to take meds before and it's been a struggle to accept all. Like you, the Rituxan reads like a scary novel on the side-effects, etc. Perhaps you can find an alternative to Rituxan? You are wise to research these meds; as many of them have terrible side-effects.
I hope someone here will be able to provide you with some information.
im on 750ml twice daily, on friday im going to to talk to the kid drs about an increase, i was unaware that the dose could go that high, it seems to me that there could be more tweakin done on the drugs that im currently taking before trying rituxan,
Hi there!! i have to say that i love the thread for the kitties!! i am dog person, but still think kittis are cute!
ok, rituxan. i have done it alone, and with cytoxan. i have sle first with heart, lung muscle involvment, thn cns sle as of oct, and have sieure now. it really worked for my muscle and joint pain and stiffness. it was sooo bad!! the cytoxan works for my heart, lung, vasculitis and brain issues. my insurance, blue cross ppo, paid with no problems. as for celcept, i was at 1000 mg per day, 500/2x. i think it workd.
as for side effects, it was MUCH easier than the cytoxan!! just a little nausea. however, i was EXTREMLY TIRED for about week :!: more so than the usual. but you come out of that. your first time is a bit wird because they are over monitoring looking for allergic reactions. if none, then no big deal. there been a few deaths i think since i started it, but my doc is very open and shared the cases with us. we still felt it worth it for what it get out of it, and i had been doing it already for over a year.
i coud go on and on, so let me know if you have more question or want more info, it looking like i the ritucan expert! :shock: :lol:
be well :wink:
ok so back in oct i found out my cellcept was not working so i did two infusions of ritux and cytoxin together in nov and dec,
its not the fun way to do things and because your wbc is so low i couldnt do much in crowded places in case i got an infection.
nausea sucks and the exhaustion, however according to clinical results everything looks great and ive improved massively (so thats positive)
thing is physically im still quite bad, at the mo i have my doctors baffled so we think it could be something else so im getting more tests done.
so if its is something else then thats why i havent noticed the good in this treatment, or im so complex that im the only person this treatment has not worked for in the world.
good luck with your decision.
I have had a few doses of rituxin. The first time they were scared to give me a big dose. They gave me around 350mg four times (every week or two). It didn't work. Six months later we tried giving me 1000mg in one dose. I had a great response. I felt good, really good. I quickly got to work dedcreasing my prednisone which was up around 40. I got it down to 20 over 6 weeks. Problem is the Retuxin stopped working. I don't know if it would have stopped anyway. I am so glad to have my steroids down. I've refused to increase them again. I did get the Retuxin again. I got 1000mg --two doses. It didn't work. My doc said he's seen a lot of people get a good result the first time and then not again.
Fair Oaks was my old stomin' grounds....Im in Jackson area now....
Anyway- I had 4 Rituxan treatments 2 years ago.....With all the pre-meds they gave me, I had only 1 symptom during my last treatment, which was jerking muscles. Otherwise, I had no nausea, but did feel tired and weak a few days later. At the time, I was on about 80mg Prednisone. The treatments took care of a lot of my symptoms, one of the worst was hemolytic anemia(I had extremely low rbc). To this day, my rbc count is normal.
My treatments came on the 2nd day of hospitalization at UC Davis. After the 2nd treatment, my insurance was questioning the Rituxan. Finally, they oked the last 2 treatments, after the drs. stated that it was medically necessary. UC Davis was outstanding-I still go to all their drs, now. I have a great Rheum. in the city of Davis.
hope this helps, Kimb