Wanted: Good, bad and ugly on rituxan

**sbryan1** · 07-15-2016, 04:01 PM

After 7 months on cytoxin and it not being effective, I had my first infusion of a rtx July 2015 4 weeks once a week. Everything went well except I did have a reaction the first time but the staff was very good and got it under control. You will also take Benadryl and a Starroid with each infusion. I then had a one time routine in Jan 2016 and am scheduled again nest week for the same 1 week infusion. The protocol is to,receive treatment every 6 mo. The only. Symptoms I have afterwards is fatique for a few days. I've never taken any other maintainance drubs during or after taking Ritixin. Good luck. It really helped me. .

**im so blessed** · 07-16-2016, 04:33 AM

I just got my first rituxan treatment scheduled for august 5th...i will post how it goes. I have been on methotraxate and imuran for 16 years as maitenence ...in the past just add prednisone during flares,but flares have been popping up every 8-10 months of late, so trying rituxan. a little nervous. Ppl on here are helpful though

**HazelEyed** · 07-16-2016, 01:39 PM

Thank you all for the nice welcome . What a nice community. It's nice to hear that rituxan is working well for so many . I saw my rheum yesterday and she is strongly recommending that I go on it. I do hope insurance covers it because she also mentioned how costly it is. She says we will fight for it with the insurance co. For those on rituxan, What symptoms or manifestations of the disease prompted you and your doctor to go for rituxan. My blood work shows as "normal" but the reAlity is anither.I have moderate blood in the urine for some months now which the doctor says could show beginnings of kidney involvement, nose bleeds and extreme nasal stuffiness and crusting, hives and sporadic joint pains which can be crippling at times. The night I signed up for this forum I could barely walk , the pain was so excruciating. Going up on prednisone always helps but would love to go off it and cellcept. I am just wondering if to be approved for rituxan by the insurance carriers one must show active kidney or lung involvement .

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**drz** · 07-16-2016, 02:34 PM

I think you need to ask your insurance company. Your physician could submit a request for approval of RTX and then you could start an appeal process if denied.

**Tom** · 08-18-2016, 04:25 PM

I don't get back to this site much because I am out camping or trying to stay busy.
As I understand the treatments for Wegs varies for each individual. I lost most all of my right lung and have severe COPD as well as kidney involvement and have no sense of taste or smell I am on 13 different meds for the wegs including Cellcept and pred for life. Some of them I take 2 times a day.
I also do RTX infusions every 6 to 8 months for maintenance. I too had concerns of the effects. About 4 years ago, I had my first infusion, A year later I had a vacation planned at the same time I was scheduled to do another infusion. The Dr decided that I could do my four infusions in 2 appointments and he said that it would actually boost my energy level. I handle my meds well and was able to do the compressed treatments and I had the best vacation in years, I had the energy that was promised and with a desire to do things. Keep in mind that I did 16 weeks of Chemo a radiation for stage 4 colon cancer in 2006 and I did it all with a smile and never got sick but did get run down physically. I never really bounced back but I one adrenalin shot in the middle of that 16 weeks and was a ball of fire for about 3 weeks! Even with a previously broken back from 2000! Attitude is part of how it is going to affect you and I have a good attitude if I do say so my self! My RTX for the wegs had a positive effect on me. Whether or not it averted a possible relapse I don't know but Im chugging along in life although my little box my life is in is getting smaller due to the lungs and the Wegs!
I am actually looking forward to my next treatment! The only aversion I have to any of my meds is the fact that I have to take them daily and about half of them twice a day!
If you go to your RTX treatment with a frame of mind that you can do this I think you will do fine with few side effects ,but again, even your Dr might tell you that we all can have different reactions to the treatment and some percentage of us may not even respond to what seems to be the normal treatment plan!

**im so blessed** · 08-19-2016, 01:40 AM

I had rituxan 8-5-16 and am running low grade fever with extreme fatigue ever since. 2 weeks tomoro. My dr wants me to go ahead with my 2nd treatment still so we will see. I was very excited to read on here all the positive things about rituxan, and i actually expected to have a treatment and feel just fine...but i guess everyone is different!!!!!!

**Gab122** · 08-24-2016, 12:31 PM

Hi hazeleyed!

Note: EDIT. I put ritux cost as $1700. Big typo. Was told $7700! Fixed below.

I'm newly diagnosed and had my first Rituxan on 8/8. The dr's never considered a diff treatment med (other than prednisone which I also take). I believe mass genl in Boston primarily uses Rituxan at this point.

I found out on the way to my infusion that my ins wanted me to start on cytoxan instead. I was told the Rituxan would cost $7700 if ins did not pay. But in the end the dr's got ins to agree to Rituxan. Maybe because I had lung granulomas? I'm not sure.

I had no problems with the infusion really, other than a brief tingling in my throat.... They stopped the infusion for 20 min, feeling went away, they restarted infusion and I had no other problems. I was tired a few days after but was pretty wired the day of (probably because of my high steroids plus the extra given with the infusion) My next infusion is Thursday.
I hope this helps.
Gab

**Yvonnea** · 08-24-2016, 07:30 PM

I took two infusions of rtx and that kept me in remission for 4 years. Just took two more as starting to flare again. Have nothing bad to say about the treatment. The infusion takes a long time, about 6 hours. But most people sleep through it. No side effects. Best of luck with your treatment.

**Pete** · 08-25-2016, 12:23 AM

Ohio State bills my insurance about $20k for each infusion. The insurance company writes it down to about $8k. My co-pay is $25.

I'm waiting for insurance ok now as I'm due for another course.