Wanted: Good, bad and ugly on rituxan

[HazelEyed]

Hello all
I'm new to the forum. Have suffered from Wegeners since 2010 but officially diagnosed about a year later. I've been on a variety of meds . The latest being prednisone and cellcept. They don't seem to be doing the trick. My rheumatologist wants me to do rituxan with cellcept. What has been everyone's experience with rituxan. I dream of going into remission some day. This is such an awful illness. This is the first support group I join and am anxious to hear your thoughts.


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[vdub]

Good question! I may be heading in the same direction, so will be watching the responses, too. Welcome to the forum!

[annekat]

Welcome to the forum, HazelEyed. I can't help you with the RTX because I don't take it, but there are many here who do, who will respond. I just wanted to say this forum has been a blessing for me since 2011 and I'm glad you found us! :smile1:

[mishb]

Welcome to the forum Hazeleyed. I'm sorry that you had the need to find such a page, but I'm glad that you have.

I also have not had RTX. I guess all of the ones that have, are out enjoying a lovely day.

What are your WG symptoms, and where do you reside.
Hopefully someone comes by to let you (and vdub) know what to expect.

[Pete]

I can't talk about using rtx and cellcept together. I did use rtx and methotrexate together with no problems.

Specific to rtx, I am a little tired the day after the infusion, but that doesn't interfere with my activities. (I'm retired, so I can plan to relax the day after.) As for the treatment, you'll be given an IV steroid (usually solu medrol) and an antihistamine(usually Benadryl) to minimize allergic reactions. The drug itself will be started at a very low flow rate until the staff sees how you react to it. If no problems, the flow rate is gradually increased. The first infusion takes 4-5 hours. Subsequent infusions take about 4 hours. The infusion center I go to at Ohio State is very nice. Each station has a TV and free wifi. The staff distributes water and snacks. Blankets are available if desired.

[Alias]

There seems to be little doubt that it is effective. Whether it is indicated for you may depend on what else has been tried and on the severity of your illness. I responded well to prednisone and MTX, now just taking 15mg MTX by injection weekly, so I have not had to make a decision about RTX. If cost is a factor, you should know that RTX is crazy expensive.

[nagesh]

Hi,
My son also diagnosed during the year 2009, He had rituxan to control a flare in 2013 and 2016, In 2016 It was a horrible flare affecting kidneys rituxan controlled it well, Now, our rehumatologist is considering to put him on rituxan as only maintenance 500 mg infusion at every six months, withdrawing all other maintenance drugs.

[Hege]

Don't know about rtx and cellcept together, but I've had two infusions of rtx. I only felt very tired the day of infusion and the day after and a slight touch of constipation (nothing too bad). I'll have my next infusion in November and then every six months as maintenance.

[MikeG-2012]

I was on Mychophenolate (generic of cellcept) without the RTX. I had a nasty flare-up after 16 months on Mychophenolate, and am considered a Mychophenolate failure. I was immediately given "emergency infusions of RTX" and have been having them every six months since 2013. I have 12 down now.

I have really no side effects, although others have. I, like Pete, feel sluggish the next few days, then bounce back after those days. I have noticed lately that about 1 1/2 months after the infusions, I feel like crud again for a few days. It is always that same time frame. We put it on the calendar last time, and sure enough when it happened this time, same 1 1/2 month period. Strange.

I do recommend that you hydrate well before going in for the infusions. Finding veins in vascular disease patients is sometimes a chore, well on me anyway. I start drinking water the minute I get up and even keep drinking water in the car ride to the clinic.

I hope you do well on RTX, and maybe, like some others, that can be your only drug you need.

Take care,

[Hammy8241]

Set up as per Pete.

Mtx was getting me nowhere so pushed to get RTX. Had it 6 monthly for two years. No side effects. However, I found it 'ran out' after 4 months or so and the symptoms would start to return. After each infusion, I was able to reduce the pred to 5mg but had to increase again as the months progressed.

Another UK based WG (Geoff), got me to get my consultant, to make contact with his consultant, who is the leading WG guy in the UK as he had been in the same situation as I was. He had been put on 4 monthly infusions of Rtx and that had worked for him. Anyway, we got permission for me to do so, and am now off all other drugs and as near normal as i ever was :)

We are now about to start extending the time between infusions to see if it comes back...or not.

I am not having any other supporting drugs.

Take a book and go for it ;)

[sbryan1]

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]

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]

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]

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]

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]

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]

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]

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]

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.

[Gab122]

Lol. Big typo - yes $8000 sounds right. Meant to typo $7700 but accidentally typed $1700. Fixed my typo. 👍

[blu4runner]

Upenn bills for $35,000 for the infusion and my health ins pays $13,500 my copay is $0 since I am at the annual out of pocket maximum :drool:

[Jaha]

I have always had mine at CC for around $32,000. I usually have to have extra steroids, Benadryl and Tylenol during the infusions. I have had 9 sessions, with the last year being just one large dose every six months. The first 4 yrs were the two week protocol. I had decided to get it done closer to home this time and was suppose to have it done this week. It got cancelled after this new rheumy had an IgG drawn and it showed to be to low. I had never had this test done before an infusion, so I was a bit confused and mad about the cancellation. I was hoping to reduce my steroids again after this infusion, I'm now back at 7mgs. I just don't really understand why they want me to wait for two weeks and have that IgG test again and then maybe they will schedule it again. I don't know whether to get in touch with CC and just have them do the infusion or be concerned about a low IgG. Anybody know much about the IgG testing or have any suggestions? Thanks in advance!

[Gab122]

Hi Jaha,

I just asked a similar question about ig infusions on one of my threads and got this reply that has a ton of info about ivig:

"Post 143 of me2 is a very good one here http://www.wegeners-granulomatosis.com/forum/random-off-topic-discussion/4238-pberggren-memorial-thread-15.html"

I couldn't find it at first til I realized "me2" is a members name and that each post is number tagged on the thread. If that number tag isn't in tapatalk it can be found by going on the forum from a laptop. (On the top right of each post)

Hope this helps.
Gab

[Jaha]

Gab,
Thank you for your reply, I think this is a very confusing subject. I will read the links you directed me to and try to understand the lingo. I am just trying to figure out if this is a normal situation for most Weggies or to see if I'm normal. haha! Wishing you all the best!

[Gab122]

Gab,
Thank you for your reply, I think this is a very confusing subject. I will read the links you directed me to and try to understand the lingo. I am just trying to figure out if this is a normal situation for most Weggies or to see if I'm normal. haha! Wishing you all the best!

Well I can't speak to what's "normal" for weggies... But I think we are all pretty special [emoji6]