Rituxan Protocols and Successess or Failures

[Lightwarrior]

My rheumy is recommending that I start Rituxan. I read the entire 32 page package insert last night. I also read some of the articles posted on here and looked at the videos of success stories on the Gene-tech web site.

It appears that the recommendation for initial treatment or to get a flare (where I am) under control is the solu-medrol 1000mg a day for 3 days pulse therapy within 14 days prior to Rtx infusion, then 375/m once a week X 4 weeks. Prior to infusion you should get tylenol and benaydryl to prevent reactions.

What are your experiences? Will I feel like poop afterward? I have to keep working so I am thinking that if I do the infusions on Friday afternoon I will have weekend to recover. Will I need this?

[Julbkwrm]

I am going through Rituxan right now (3rd Appt is tomorrow), and I have had side effects. Actually, I have felt really good afterward. I chose Friday as well, since I am still working full time, and that would give me the weekend if need be. The only problem I had, was I got the chills really bad during my first infusion. After that, they gave me 2 Benaydryl, and I had a really good nap.

Good luck to you. I know how scary it can be. this is my first flare, and I just got diagnosed in February. I am still learning.


My rheumy is recommending that I start Rituxan. I read the entire 32 page package insert last night. I also read some of the articles posted on here and looked at the videos of success stories on the Gene-tech web site.

It appears that the recommendation for initial treatment or to get a flare (where I am) under control is the solu-medrol 1000mg a day for 3 days pulse therapy within 14 days prior to Rtx infusion, then 375/m once a week X 4 weeks. Prior to infusion you should get tylenol and benaydryl to prevent reactions.

What are your experiences? Will I feel like poop afterward? I have to keep working so I am thinking that if I do the infusions on Friday afternoon I will have weekend to recover. Will I need this?

[Lightwarrior]

I am going through Rituxan right now (3rd Appt is tomorrow), and I have had side effects. Actually, I have felt really good afterward. I chose Friday as well, since I am still working full time, and that would give me the weekend if need be. The only problem I had, was I got the chills really bad during my first infusion. After that, they gave me 2 Benaydryl, and I had a really good nap.

Good luck to you. I know how scary it can be. this is my first flare, and I just got diagnosed in February. I am still learning.

Thanks for sharing your experience. This is not my first flare but it it is still scary.

[Julbkwrm]

I should have put NO side effects. I need to learn to type.

[pberggren1]

I would not go for those 3 infusions of solumedrol first. I would prob go with the 4 infusions spaced one week apart.

[Lightwarrior]

I would not go for those 3 infusions of solumedrol first. I would prob go with the 4 infusions spaced one week apart.


Thanks Phil, why not the infusions? This is what the package insert recommends. Too much??? since this is not my first rodeo?

[KathyB]

Hi Light -- I had my first infusion 5 days after diagnosis once I was stablized. The treatment schedule was once a week for a total of 4 weeks (4 infusions). They administered the first one very slowly to determine how I was tolerating the drug and it included Benadryl and Tylenol. I had no side effects during the infusion and was tired the following few days each time. My 2nd round was two infusions, 15 days apart. Same experience as first time. Expect the medical team to monitor you closely during the entire infusion, checking your blood pressure and making sure you are comfortable and not experiencing any pain or side effects. I was fortunate to have the treatments in a center that administered chemo on a regular basis. They were wonderful! Oh yeah, take a book! (Like Julbkwrm, I slept, too!) Hope it all goes well for you!

KB

[carriej22]

I had no choice but to have Rituxan (all that was offered, death row, diagnosed one day, treatment the next).

I didn't read the script. I just signed it. Bad Carrie. But hey, it was kind of do or die (literally).

I had the solumedrol, and the 4 infusions 1 week apart. Honestly, the worst part about the entire process was how LONG it took. 7 hours for my first infusion, but I had a reaction (itchy throat, chills, coughs) and they went all nutso and stopped it right down. Each one got quicker after that though since I had no more reactions, second was 5.5 hours, next was like 4, and my last one I think was 3.5. It made me sleepy, but not sick. Actually the benedryl and stuff they gave me beforehand probably is what made me sleepy. I felt tired for a few days afterwards, but nothing major. I went shopping and out to eat after my last infusion, LOL.

I napped in the chair as well. With all the warm blankets and warm drinks they gave me they were looking for me to sleep.. lol

The effects were immediate - I went from not walking on diagnosis (like, could not bend my knees) to walking down the aisle on my wedding with no pain a week later... No more coughing up blood, eyes went back to normal, some hearing came back and the sores started to go away. It worked for me. I need go to again in dec/jan for more..

[drz]

Don't you just love it when they say do you want to take this drug with all its risks and side effects, or not and die?

[pberggren1]

Thanks Phil, why not the infusions? This is what the package insert recommends. Too much??? since this is not my first rodeo?



3 big infusions of solumedrol like that at first is more for severe Wegs. Probably 100 or 200 with each rtx infusion should be enough.

[Lightwarrior]

3 big infusions of solumedrol like that at first is more for severe Wegs. Probably 100 or 200 with each rtx infusion should be enough.

Thanks, I have an appointment tomorrow.

[drz]

Thanks, I have an appointment tomorrow.

Good luck with it. Hope it goes well.

[RCOSSIO]

Hey Light...did your other treatments stop working for you? Why RTX now, new flares not controlled?

[Lightwarrior]

Hey Light...did your other treatments stop working for you? Why RTX now, new flares not controlled?

Yes, I have never had a medication free flare and am now @60mg of pred again to back off a new flare. I had the rash, the excruciating joint pain, the snotty drip drip and unable to breath with any exertion. I have had to work through all of this since I don't want to sacrifice my time. Not easy, I basically am confined to sitting in my office with nurses stopping in to talk to me about any issues. I hate not being able to be out on the unit. I also hate being totally exhausted by 10:00 AM.

[Lightwarrior]

Yes, I have never had a medication free flare and am now @60mg of pred again to back off a new flare. I had the rash, the excruciating joint pain, the snotty drip drip and unable to breath with any exertion. I have had to work through all of this since I don't want to sacrifice my time. Not easy, I basically am confined to sitting in my office with nurses stopping in to talk to me about any issues. I hate not being able to be out on the unit. I also hate being totally exhausted by 10:00 AM.

Oh and he increased my mtx back to 25mg from 15mg. Since I have yet to have a medication free remission and have only had short remissions i figure that Rituxan is worth a shot

[RCOSSIO]

60MG of pred....WOW! That's high....I received 60mg of pred when I was first diagnosed. Hope RTX does the trick!

[Lightwarrior]

60MG of pred....WOW! That's high....I received 60mg of pred when I was first diagnosed. Hope RTX does the trick!

Me too, this is no fun for me or the people I work with. They have permission to tell me "spin" and I know I need to slow my thought process down and stop making THEM crazy

[KathyB]

You are in my thoughts and prayers, Light. It is very frustrating not working and still wanting to contribute. I gave up my dream job at the end of June and continue to try and adjust to the quiet life! I hope you can keep going! Good luck with your treatment!!

KB

[drz]

Me too, this is no fun for me or the people I work with. They have permission to tell me "spin" and I know I need to slow my thought process down and stop making THEM crazy

I found it tough to function at those levels and felt rather hypomanic and emotional much of the time. Plus the horrendous pred snack attacks and bouncing blood glucose levels all over the place. It certainly is not a good time and it is good you have colleagues to help you stay grounded enough to still work. I know I couldn't have done so. hope things improve quickly for you.

[Sangye]

Light, the 3-day pulse steroids are only if you're having a severe flare in which you need the massive pred to save your life--eg lung hemorrhage, kidney failure. It's hard to know if you should do the 2 infusions a week apart or the 4 infusions. If you're experiencing a bad flare I suggest doing the 4 infusions. Also, if you're on the heavier side like me, there is a sizeable dose difference between the 2 protocols since the 2-dose protocol uses 1,000mg for each while the 4-dose protocol is weight-based.

Before the infusion you should be given benadryl and at least 80 mg solumedrol. Dr Seo gives me 100 mg solumedrol but said he wouldn't give less than 80 to anyone.

[Lightwarrior]

Light, the 3-day pulse steroids are only if you're having a severe flare in which you need the massive pred to save your life--eg lung hemorrhage, kidney failure. It's hard to know if you should do the 2 infusions a week apart or the 4 infusions. If you're experiencing a bad flare I suggest doing the 4 infusions. Also, if you're on the heavier side like me, there is a sizeable dose difference between the 2 protocols since the 2-dose protocol uses 1,000mg for each while the 4-dose protocol is weight-based.

Before the infusion you should be given benadryl and at least 80 mg solumedrol. Dr Seo gives me 100 mg solumedrol but said he wouldn't give less than 80 to anyone.

Thanks, He ordered the 4 infusion protocol (I am most assuredly on the "heavier" side) Still waiting for Insurance pre-auth. He ordered 100 solumedrol, vistiral (benadryl makes me edgy) and tylenol prior to infusion. I want to hurry up so I can taper this 60mg of pred down. The rheumy told me to do the taper because I could probably do it better than he could. Sometimes I get tired of these docs thinking because it is me that I can manage my own care. And yet......if it wouldn't have been for this forum and your advice I truly believe I would be dead.

[Debbie C]

Good luck with yr infusions,Light. I hope u can lower yr preds soon.I don't see how u do it and still work.I'll keep u in my prayers and hope all goes well for u soon.

[mishb]

Good luck Light.
I hope this see's you through to the end of the year, in regards to your work ...... and hopefully beyond.

I couldn't agree with you more in relation to this forum.......we do have a lot to be thankful about.

Take care and as always .......

[Lightwarrior]

Good luck Light.
I hope this see's you through to the end of the year, in regards to your work ...... and hopefully beyond.

I couldn't agree with you more in relation to this forum.......we do have a lot to be thankful about.

Take care and as always .......

Thank you all for your warm wishes and prayers, I truly feel the warmth. I have authorization now so I will get my first infusion this Thursday (day after tomorrow). I feel like I have been drug through the mud and left on the side of the road. (I know, I'm a bit of a drama queen :rolleyes:) i am hoping that I jump up after the infusion, do cartwheels to my car while singing the sound of music. I am broken hearted that I will not be able to get the infusion on Saturday. I had to let go of the notion that it is all about me. This will cost me 8 maybe 16 valuable hours needed at the end though. I need to give up my pity party and be grateful that I get to try a treatment that might put me in remission, perhaps even drug free. Looking at the problem through those lenses makes me pretty ungrateful. So........... I am thankful for the chance to get the infusion even though it may cost me some hours.

MOST of all I am thankful for all of you.

[mishb]

You are definately not a drama queen.........you are the light warrior :biggrin1:

I so wish I can be there.....not just for you.......but to see the cartwheels whilst the joyous sound of the hills are alive, are being sung.
If I was capable of doing a cartwheel for, or with you, I would .........but unfortunately, cartwheels escaped my childhood achievements. :razz:

Good luck........ and so what if you miss some hours........you are going to have this treatment and be a new woman. :thumbsup::hug3:

[Lightwarrior]

You are definately not a drama queen.........you are the light warrior :biggrin1:

I so wish I can be there.....not just for you.......but to see the cartwheels whilst the joyous sound of the hills are alive, are being sung.
If I was capable of doing a cartwheel for, or with you, I would .........but unfortunately, cartwheels escaped my childhood achievements. :razz:

Good luck........ and so what if you miss some hours........you are going to have this treatment and be a new woman. :thumbsup::hug3:

Awwwwwwww....I have happy tears running down my face. I love our group

[RudiK]

Good luck, Light, and all the best. I hope and pray that the treatment works for you and get you back into remission.
Rudi K.

[Sangye]

Gah! I'm just seeing this. I hope it went well for you, Light. :hug1:

[KathyB]

I've been off a few days, too, Light! How did it go? Were the "hills alive with the sound of music?" Were "edelweiss" in a vase on your table? Were your "favorite things" floating through your mind during the infusion? Were you "16 going on 17" while you were dreaming? Did an absurd little bird pop out to say "cuckoo?" Did you "climb every mountain" to finish strong and get home?! (If you hadn't noticed, the Sound of Music is my all-time absolute favorite movie!!) Seriously, hope you did well and are back on the forum soon sharing your positive experience!

KB :thumbup:

[blessed2bamommy]

Just now reading this thread. I hope your infusion was trouble free and you are feeling good.

My daughter had the 3 pulse and then Rituximab. It was a do or die situation. She was very, very sick. Unfortunately she did have a bad reaction. Her blood pressure shot up and she ended up seizing and landed in PICU in an induced coma. Scary times. I was home with a newborn and my husband was at hospital with her. She's much better now though still has a long road ahead of her. They said she developed PRES (Posterior reversible encephalopathy syndrome). Honestly can't say if it was the Rituximab that did it or the Cytoxan. She had both and right now I can't remember which one she had the night of seizures.

[Lightwarrior]

I had the first infusion. No reactions during infusions. Tired when I got home. Tired Friday but definite feeling of wellness. Today I have extreme fatigue every joint hurts red snot. I have three more infusions so I still have hope that Rituxan plus three more infusions will equal sleeping potion for Wegs dog.

Sound of Music is my granddaughter's Desirees favorite movie.

I can feel all the warmth and light.

Now...how do I taper my pred and mtx?

[drz]

I had the first infusion. No reactions during infusions. Tired when I got home. Tired Friday but definite feeling of wellness. Today I have extreme fatigue every joint hurts red snot. I have three more infusions so I still have hope that Rituxan plus three more infusions will equal sleeping potion for Wegs dog.

Sound of Music is my granddaughter's Desirees favorite movie.

I can feel all the warmth and light.

Now...how do I taper my pred and mtx?

Glad the first infusion seemed OK. Hope you feel better soon. The docs will tell you when and how to taper the other meds but hopefully the higher dosages will help you get into a remission quicker and feeling better too. Think healthy thoughts.

[Debbie C]

Glad yr 1st infusion went well Light..1 down 3 more to go and I'm sure you'll be down to nearly nothing on the preds and mtx soon. Just try to get as much r&r as you can and your light will be glowing bright again soon !!

[Debbie C]

My gosh ,I feel so bad for your daughter having to go thru all of this at such a young age. Its tough enough for us old folks to handle this let alone a teenager.You and your husband sure have yr hands full especially with a newborn.I never heard of PRES before..I'll have to google it.That's why I am so learing about trying all this drugs they keep pushing on us.I can hardly wait til I go see my reumy and he finds out I haven't been taken Cellcept,I'm just praying my bloodwork comes back good before I see him. But as for Bethany ...I hope she starts to feel better soon and has no more problems.

[onatreetop]

It is good to hear the 1st went well. The infusion lab I go to usually was reacations with everyone who takes it. my first time malwas okay. second time better but third time i went in tired and weak and didnt take it well. tired after also. but a few days after resting got back to whatever is normal.

[KathyB]

So glad all went well for you, Light. Sounds like you are in good hands (in many ways) and the outlook over the next month should be bright and sunny!! Keep us informed of your progress!

KB:thumbsup:

[Lightwarrior]

It is good to hear the 1st went well. The infusion lab I go to usually was reacations with everyone who takes it. my first time malwas okay. second time better but third time i went in tired and weak and didnt take it well. tired after also. but a few days after resting got back to whatever is normal.

I am so tired and weak but how are you? I read your other post. Is there someone who can manage your wegs there? I hate it that the Weg dog is barking at both of us right now.

[marta]

Hey Lightwarrior,

I'm sorry you're feeling down, but I know that this is the right direction for you. I think of you often and am sending that awesome light that's always coming out of you in our direction back into your direction. Take care of yourself, and use this as an opportunity to pamper yourself a bit - brought to you by the universe.

And if you really want to feel good, after your next infusion look at the toilet every time you go number one for a couple days and know that you're about to flush all those confused, belligerent little B Cells down the toilet, and you'll never have to deal with them again. I like to wave bye-bye to them as they swirl away

Lots of love to you my friend.

m

[Meredith]

Had 4 Rituxan transfusions approx. 1-1/2 years ago. Went out of remission this past March. Had (2) transfusions. Blood test (inflation) is still showing to high. The doctor put me on Leslunomide - anyone else use this before.

[Lightwarrior]

Had 4 Rituxan transfusions approx. 1-1/2 years ago. Went out of remission this past March. Had (2) transfusions. Blood test (inflation) is still showing to high. The doctor put me on Leslunomide - anyone else use this before.

Thanks for sharing your experience I get my 4th infusion this Friday. Today is the best day I have had so far. I do have cellulitis in lower right leg which my pcp jumped on. Levaqun 500mg a day X 7 days. I also have the start of a vascular ulcer lower right and left legs with right leg draining clear fluid enough to soak my sock by noon I'm going to make a wound care appt tomorrow. I can't walk over 100 ft without breaking into a full body sweat and not being able to breath. I 'm hoping that the Rituxan will help with that when it fully kicks in.

I think I am getting scared and need to vent to you guys. What if Rituxan doesn 't work for me? I've never had a drug free remission. Why is wegs fighting me so hard? I cut from 60 to 50 of pred Do I need to go back up on the pred? Wil I ever be able to get off of pred?

Okay I'm done with my waa waa waa. Thanks for listening. Go 4th infusion of Rtx

[Dirty Don]

I think I am getting scared and need to vent to you guys. Okay I'm done with my waa waa waa.

There is NO 'wahwahing' in WG...oops, wrong movie...LOL...glad you vent Light...sometimes that IS the best medicine, clears our heads and hearts a little, perhaps enough to deal a bit better with the dawg...since it ain't going away anyway...best to you Light...you're a little crazy, but extremely tough! LOL! I've been in a funk over WG lately too and I'm feeling fine, well, better than recent times...but sometimes this crap just eats at you...it's another way for WG to get at us...don't let it!! OMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM!!!

[Psyborg]

So it's been about 6 months and I'm nervous. I'd love to get a year healthy, but honestly I'm starting to see little red flags. Had a wired Lumplike feeling in my throat. Got pretty dizzy after walking yesterday. And have a few tiny sores on my hands. Might all be coincidence, see the doctor at the end of the month so should know more then.

[Pete]

Any chance you can see the doc sooner? At least give her a call and let her know your symptoms.

[Psyborg]

I don't think it's enough yet to be concerned. Just worried that Rex will wear off after 6 mos like last time.

[Sangye]

Catching up on this thread.... Lightwarrior, how are you doing now?

Bob, please let your doctor know. The end of the month might be too far away. You might just need to bump up a dosage of something to stop a flare.

[Lightwarrior]

Catching up on this thread.... Lightwarrior, how are you doing now?

Lousy health wise. My last day of working is this Friday December 14th. I am excited about that. I have filed for Long term disability. I have unfortunately had no benefits from the Rituxan. My rheumy told me that there is nothing else he can think of to do. He recommends that I go to a Wegs specialist. I hope to be able to do that right after Christmas. I have zero energy and have extreme chest tightness and difficulty catching my breath after standing for more than two minutes. I am just here in the office this week to hand off projects I was involved in.

[Sangye]

Oh no, Lightwarrior. I don't like the sound of that at all. Can he order a chest CT?

If you're gonna get to a Wegs doc (which, YAY) you might want to get an appointment set up now and start getting your records sent, etc.... Do you know where you'd go? I'm so worried about you, Light. I will keep you in my thoughts and prayers.

[drz]

Lousy health wise. My last day of working is this Friday December 14th. I am excited about that. I have filed for Long term disability. I have unfortunately had no benefits from the Rituxan. My rheumy told me that there is nothing else he can think of to do. He recommends that I go to a Wegs specialist. I hope to be able to do that right after Christmas. I have zero energy and have extreme chest tightness and difficulty catching my breath after standing for more than two minutes. I am just here in the office this week to hand off projects I was involved in.

Sorry to hear this but can understand your feelings and lack of energy. Have you contacted the nearest expert to set up appointments since it can take awhile to get in until you are an established patient or unless your referring doctor has good contacts to get you in quickly.

[Debbie C]

Lightwarrior,sorry to hear you are still feeling lousy but am glad to hear you will be off work,that will give you time to relax and maybe feel better .If I were you ,with your symstems,I would go to the e.r. and maybe they can find a dr. there with wegs.exp. and like Sangye said at least get a chest scan.Sure hope you feel better soon..will say a prayer for you.

[JeanMarie]

Lightwarrior,
((((Hugs)))), good thoughts and prayers comming your way.

Hope the specialist has an answer for you!!!

[Psyborg]

lightwarrior, sorry you are feeling poorly. I hope things turn around for you soon.

[Psyborg]

Catching up on this thread.... Lightwarrior, how are you doing now?

Bob, please let your doctor know. The end of the month might be too far away. You might just need to bump up a dosage of something to stop a flare.

Have a call into the Doctor today. My hips started hurting in the mornings where they have pressure on the bed at night...very reminiscent of the first bout. I'm almost exactly 6 months out from the last infusion.

If I'm flaring this is starting to get really frustrating. Seems to happen every time I start to feel "normal" again. I suspect that is because its the point my immune system starts to replenish. Didn't even manage to hit 5 mg of prednisone this time around.

[pberggren1]

I sure hope you're not flaring Bob.

[Psyborg]

Me too :) I'm not feeling horrendously bad or anything, but the hips hurting is just weird since I haven't done anything to aggravate them.

[carriej22]

Bob, my hips hurt too about a month or two ago.. Time seems to run together.

The were really, really bugging me for the course of a few weeks. I was losing sleep because I couldn't sleep as laying on one side too long was really uncomfortable. I seen my specialist in that time and he suggested it may be because I was weaning off pred.

He slowed my pred wean down a bit and the pain diminished and I don't have the pain now. Not suggesting this is your problem, but I was panicking too. I was like "Oh god, oh god it's coming back and I'm going to die" (I'm a bit of a drama queen).

[Psyborg]

I'm hoping that is right. It's been a bit over a weak since the last drop in pred. That said, I do feel a bit better today so maybe that was the problem :)

[Psyborg]

Well things cleared up. I'm still having a few weird issues here and there, but i think it is actually the pred reductions causing the issues. My doctor called me back on Sunday, but the pain I had been having had subsided. I'll bring up the weird stuff when I'm up there, but I can go slower on the Prednisone if it means no flares :p

[Pete]

Hope you continue to feel OK and can eventually get off pred.

[drz]

Well things cleared up. I'm still having a few weird issues here and there, but i think it is actually the pred reductions causing the issues. My doctor called me back on Sunday, but the pain I had been having had subsided. I'll bring up the weird stuff when I'm up there, but I can go slower on the Prednisone if it means no flares :p

I have some minor transitory symptoms when tapering down on the pred but it usually went away in a few days. Then I would wait a few more days and try another small taper. From 8 to 5mg I went down only 1/4 mg about every ten -twelve days or so.

[Psyborg]

I think the worst thing about this is not knowing what is the withdrawl symptoms versus the symptoms of the disease...doesn't help that our symptoms can be so wide ranging :)

[pberggren1]

I hear ya Bob. It can be confusing at the best of times. What symptoms are you having right now?

[Sangye]

I was surprised by how painful it was to reduce pred at times. Sure got my attention! For those who don't know, pred-reduction pain goes away in 2-3 days but Wegs pain stays the same or gets worse.

I'm glad you're doing better, Bob.

[Psyborg]

Well saw cc today. Turns out I'm doing great, so pretty pleased with that. Turns out the hip pain is bursitis. Seems funny that bursitis while painful is good news lol

[Sangye]

That's great, Bob! :thumbsup:

[Psyborg]

So far so good this time around. They want me back in 3 months since its been 6 since the last RTX infussion. I'd appreciated not needing another as they cost a bunch out of pocket. Just lucky I'm in the position to afford it.