PDA

View Full Version : rituxan



TERIOD
05-01-2007, 06:04 PM
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
Thanks
Terry

MARYCAIN
05-01-2007, 06:31 PM
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.

TERIOD
05-01-2007, 07:03 PM
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:

browneyedgirl53
05-01-2007, 10:06 PM
Hi Teriod,

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.

Much love,
Browneyedgirl

TERIOD
05-02-2007, 06:17 AM
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,

angela
05-02-2007, 11:05 PM
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:

angela
05-04-2007, 08:39 AM
:)

noms
07-02-2007, 12:43 PM
hi teriod,

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.
noms xxxxxxxxxxxx

cramer
07-08-2007, 11:39 AM
Hi,

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.

kimb
07-23-2007, 08:16 PM
TERIOD-
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

TERIOD
07-24-2007, 06:57 AM
TERIOD-
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

nice to hear from you Kimb, and all the others that have posted here

my question to kimb is how did it work??? i hope you have had a very positive outcome with this treatment, also i am glad you posted as i am looking for a very good rhuemy in the area, would you care to share the name of your doctor, i have very good care with the veterans system, but there is some document issues the only a private practice doctor can handle for me



thanks Terry :lol:

Pretti in Pink
07-24-2007, 12:54 PM
Teriod,

I'm with you on Rituxan, just kind of confused. My rheumi wants to use to help with Nephritis after 9 months of cytoxan, he seems to think it's not helping because I am stilling spilling alot of protein. I have to do a biopsy first for them to determin what stage it is.

kimb
07-24-2007, 02:23 PM
Terri- :D
I would have to say that the Rituxan has helped. I have had no joint pain, rashes, fatigue, or anemia. My dr. says all my labs say my lupus is not active now. But.....I have had recurrent pericarditis for the last 2 years, since my rituxan treatments........ ?Humm?. I seem to think the pericarditis it is steroid dependant, because each time I got close to lowering my pred to 10mg is when the pericarditis came back. I have no other lupus symptoms. My major lupus symptoms were joint pain, fatigue and red blood cell anemia(when I was hospitalized, I also had: blood clots in upper arms/lungs, fluid around my heart and lungs)
I am in the process of lowering my pred now, I am at 11mg. So we will see what happens, as I lower. I also take Methotrexate and Colchicine for inflammation, Protonix and Folic acid daily.
My dr.s name is Dr. Stanley Naguwa, he is with UCDavis, in Davis. and he is a rheumatologist. I know of another gal here, she goes to a doc in Carmichael, I could get his name also.
Hope this helps.....Kim
ps. have you been to the ALR walk in San Francisco, in November?

TERIOD
07-24-2007, 02:40 PM
yes could you get the name in carmichael for me, I actually see dr Nugawa at the veterans hospital, he is a very good doctor, he is the one who diagnosed me with sle lupus, but unfortunalty i need to get a consultation and prognosis with private practice dr for ssd

I sure would appreciate it
Thanks Terry
:lol: :lol: :lol: :lol: :lol:

bridgetbubbas
02-18-2008, 08:20 AM
So, I have been diagnosed for almost 6 years (mixed connective tissue) but Lupus seems to present more then any of the other connective tissue problems...I have just recently had 2 rituxin injections each two weeks apart (last one was exactly 2 wks ago today) I still haven't felt any of the possitive affects of the injections.....does anyone have any idea when I should start feeling the affects? My Dr. and Nurses tell me everyone is different....(easy answer) I'm so far ok with side affects....during the inection....not so fun, and for a couple of days after....feeling weak....now I'm hyper.....and my joints are swollen....the 100mg of steroids they gave me prior to the rituxin, make me well you all know....roid rage! any way.....just hoping that I will feel something soon, as I have tried all oral meds to no avail.....

Saysusie
02-18-2008, 01:28 PM
In clinical trials of Rituxan, it was found that patient's symptoms had signficantly improved after 24 weeks. I don't know if this is how long it takes before you see any improvement, but it does say to me that you have to give the drug some time before you can expect significant improvement.
Your doctors are right, however, that everyone reacts differently to Rituxan because everyone's chemical make-up is different.
Now, you mentioned "roid-rage" with your steriod. I do not know what type of steroid you are using, but in cases of steroids for auto-immune diseases, we use corticosteroids. These steroids DO NOT cause "roid-rage" like anabolic steroids do. The steroids used for auto-immune diseases (corticosteroids) are a class of steroid hormones that are produced naturally by the body in the adrenal cortex. Corticosteroids are used for a wide range of physiologic systems such as stress response, immune response and regulation of inflammation, carbohydrate metabolism, protein catabolism, blood electrolyte levels.

Anabolic steroids mean steroids that build muscle, retain protein, and
corticosteroids are so-called catabolic. They break down tissue. They're basically used for anti-inflammatory effects. People on corticosteroids for any length of time, may get muscle weakness and their body may go through changes which are quite the opposite of what you see with anabolic steroids. The primary connection between corticosteroids and behavior are the user's susceptibility to stress and enhanced or reduced responsiveness to environmental influences.

I don't believe that the shorthand-word "steroids" should ever be used when referring to corticosteroids because the public has been confused, and many people who are taking corticosteroids for a variety of medical illnesses are of the belief that they're going to get all these horrible side effects that people talk about in terms of anabolic steroids (like "roid rage").

I am not, by any means, dismissing your emotional upheavals. They are very real and are more likely caused by the disease and not the corticosteroids. Anxiety, depression, anger, and sometimes aggressive behavior have been found to be symptoms of auto-immune disorders and are most likely due to CNS involvement of the disease.

I hope that I've answered your questions :lol:
Peace and Blessings
Saysusie

june
01-21-2011, 12:27 PM
Hi All, I started a course of Rituxan in December and still waiting for it to kick in and start working...how long did it take for it to start working for you guys? I'm also on steriods which has been recently been reduced to 7.5mg which is the lowest ive been on for such a very long time. Of course the aches and pains are back...unfortunately I have been through the list of medications and my body doesnt seem to tolerate any of them...causing problems with my kidney and liver and of course putting my strain on my body. In the last few weeks and especially today I have been getting very sharp pains in my abdomen....not quite sure whats going on there!!!

I just hope that the Rituxan will work and keep on working as the consultants are running out of options. Please let me know how things are going with you all...it will nice to chat with someone else on this treatment. Take care. June xxx