Rituxan Use

[Trudy]

For those of you who have had Rituxan, what is the longest time span before needing another infusion?

What body involvement do you have and did this drug take care of all your symptoms?

Are you also on any maintenance drugs?

Thank you to those taking time to reply,
Trudy :biggrin1:

[pwc51]

Hi Trudy,

I cannot answer your first question yet (thank goodness) as it is 9 months since my first treatment and the symptoms are still being held at bay! My consultant will only repeat the treatment if the symptoms return. In his experience the minimum period is about 9 months but a number go up to about 18 months - although there is always the hope that the symptoms never return and all other medications can be reduced to get to drug free remission!

For me the effects were fantastic, pushing the visible symptoms away - it rapidly got me to Wegs normal (if there is such a state). I guess fatigue is probably the key condition I suffer from these days.

I am still on maintenance drugs - primarily pred and methatrexate (injection).

Peter

[TommyG]

Hi Trudy

It has been 10 months for me since my first and only treatment of RTX. I had sinus, ear and lung involvement. RTX worked well for me unlike CTX. After RTX my lung involvement finally stopped. My severe headaches went away. I still have some sinus and ear stuff and fatigue, but much milder than before. I'm on methotrexate 20 mg and pred now down to 6 mg for maintenance. Hope this helps.

TommyG

[Al]

Trudy, I do not have first-hand experience with RTX--not yet, anyway, though if I have another flare, CTX is now off the table. So the most I could do is report what I've read and heard from others. So I will lie low in this discussion for now. More if I have something to add....

Al

[mama2005]

I was given my first round of rtx on November 2010 and the second dose two weeks later. I agian had another round 8months later because my B cells had returned. The Dr said it was not normal for the b cells to return that quickly. the dose in July of 2011 has been fine and I have been off all meds for two months.
My involvement is sinus, hearing loss, joint pain, lung, subglottic stenosis, eyes, and fatigue. Some symptoms completly disappered and others will always be there for me.

[KathyB]

I have recent experience with Rtx beginning after diagnosis in early September, 2011. While starting on Cytoxin and megadose prednisone in the hospital, the doctors decided to try Rtx. I tolerated it well and was able to stop the cytoxin. My other 3 doses were done by infusion as an out patient every week in September. Apparently due to immune suppressants, I contracted a serious case of fungal pneumonia later in October. No WG involvement indicated. But my declining dose of prednisone was bumped back up to 60 mg/day. My med for pneumonia was Voriconazole. About six weeks into the treatment, came an allergic reaction to the med and then drug-induced hepatitis. I had a 10-day reprieve of anti-fungal med and have rebounded from high liver enzymes and kidney function issues. So now I'm on Posaconazole for 4 more weeks to finish up pneumonia meds and have reduced prednisone to 10 mg/day. So I guess we'd call the prednisone my maintenance drug. I'll stay at this dose until next test (CT lung scan) at end of January and doc visits on Feb 1. I also have weekly blood tests. I'm scheduled for next Rtx regiment at beginning of March which is at a 6-month interval since my diagnosis. My rheumy has suggested this will be the normal routine for me. My involvement has been primarily with kidneys and lungs with a bit of ear popping (fluid). Symptoms include the "fog" (although it has really improved), limited strength and stamina (taking advantage of physical therapy), and fatigue (including being out of breath rather easily). According to my docs, the most "susceptible time" after Rtx treatment is 2-4 weeks, but the meds last 6 months. Hope this helps!

KB

[BrianR]

Marta is in Edmonton today for an RTX infusion. another follows in two weeks. This being 10 months after her first go-round. She has been doing quite well since her first infusions but felt a few of the original symptoms slowly creeping back a month or so ago and, after discussing with her Dr., they agreed another round would be appropriate. She is at 7mg of pred and has been weaning VERY slowing for the past 10 months - reducing 1mg per month. I expect she will hold at 7 mg now for another month after this round and then start the taper again. Hopefully this round of RTX keeps the beast at bay for a while.

[LisaMarie]

Ok my first round of RTX was August 2010 and I felt like a mack truck ran me over with each dose ...I had 4 doses once a week for 4 weeks...but I was also on Imuran at week 2....I start again tomorrow but this time only 1 dose every 14 days times 2 and no other drugs like imuran...I have very small amount of B cells but for what ever reason my WG is waking up and causing problems....I just have my trachea redilated..i was 50% + occluded...i have a new WG spot on my left bronch which is small...so Dr Specks is hoping to nip it now...last time I ended up with ground glass mosaic opacities in both lungs and hospitalized for 14 days with a near death experience...so I am hoping it was the Imuran mix and this time i will be fine....I almost went 2 years with out having to have my trachea dilated...all of us are unique in our own way with how we react and how WG effects us.....Sangye if you are reading this congrats on your year out without the H word...and I hope you found a lake to park the RTX mack truck at....I will let you know after my treatment....have a great day yall

[Chris G]

I don't know what the MAXIMUM affectivness is, but for me, it lasted exactly 6 months. I had one round of rtx in May, and another round in December - 6 months apart. The second round (Dec) was scheduled as preventative measures, as I am not on any other control meds (9 mg pred, but that's not a control med).

Two weeks prior to the round which was scheduled in December, symptoms started creaping back. They were mild: increased nasal crusting, increased fatigue, daily headaches, night sweats, (elbow pain - see below). Now that I'm about 5 weeks post (2nd round) rtx, everything is pretty much back to being under control.

Wegs has affected my nose (bleeding/crusting), sinuses (stuffiness, infections, daily headaches), ears, throat, eyes, a couple of large joints. Interestingly, I learned, that what I though was elbow tendonitis for years, is actually wg joint pain!! Rtx has effectively wiped out everything but some minor nasal crusing (also the constant drippy nose), and the DAMN fatigue, which I really don't think is ever going to go away.

[ArlaMo]

I had my one and only pair of infusions back in April of 2011. I asked my docs if I could do another round in about November, but they were set on having me go onto a maintenance drug. Tried Imuran but was unable to tolerate it and now I am on 2000mg Cellcept. Mostly, I feel ok, but I still have issues with my throat and nose. Kidney labs have been good since shortly after my infusions. I had sinus, lung, kidney and joint involvement.

[KathyB]

We are all experiencing so many different symptoms and treatments! Having all of you post is certainly an excellent way to learn and provides great info from which to research and discuss with doctors and each other! Thank you!!

[Dirty Don]

We are all experiencing so many different symptoms and treatments! Having all of you post is certainly an excellent way to learn and provides great info from which to research and discuss with doctors and each other! Thank you!!

I wish there was a way to catalog all this info...I'd volunteer, but I forget what I just went into the next room for at this time...but it is a worthwhile project to condense much of this info. Some of it is beyond me, so I need help. Some of it is right on point & helpful. And I just don't know what some others are thinking!! LOL! Anyway, just an idea!

[Sangye]

I've had 4 rounds of rtx. #1, 2 and 4 were 4 infusions and #3 was just 2 infusions. I don't have an allergic reaction to rtx but I do have a very uncommon negative reaction to it-- it completely flattens me for 6-8 weeks. Severe fatigue that gets worse with each infusion. It's miserable.

It seems to last 6-7 months for me. My labs still look good (meaning B cells are still zero) every time, but the joint pain, increased fatigue and lung hemorrhage start creeping back. That seems to be the case again right now, even though Dr Seo felt certain this last round would work for a year. The first round or two seemed to do a better job at decreasing my symptoms between treatments than the most recent rounds.

[Trudy]

These answers are great. This is the type of information you will probably never get from your doctor or on an internet search!

[Al]

Marta is in Edmonton today for an RTX infusion. another follows in two weeks. This being 10 months after her first go-round. She has been doing quite well since her first infusions but felt a few of the original symptoms slowly creeping back a month or so ago and, after discussing with her Dr., they agreed another round would be appropriate. She is at 7mg of pred and has been weaning VERY slowing for the past 10 months - reducing 1mg per month. I expect she will hold at 7 mg now for another month after this round and then start the taper again. Hopefully this round of RTX keeps the beast at bay for a while.

For those who don't read Marta's blog (you should): She had made it past today's first RTX infusion of this set, and, rather inspiringly, has already written a long post about it, and its implications (!)

Weggies Unite (http://weggiesunite.blogspot.com/)

Al

[LisaMarie]

I've had 4 rounds of rtx. #1, 2 and 4 were 4 infusions and #3 was just 2 infusions. I don't have an allergic reaction to rtx but I do have a very uncommon negative reaction to it-- it completely flattens me for 6-8 weeks. Severe fatigue that gets worse with each infusion. It's miserable.

It seems to last 6-7 months for me. My labs still look good (meaning B cells are still zero) every time, but the joint pain, increased fatigue and lung hemorrhage start creeping back. That seems to be the case again right now, even though Dr Seo felt certain this last round would work for a year. The first round or two seemed to do a better job at decreasing my symptoms between treatments than the most recent rounds.
Hey Sangye
On my way for my 2nd round of RTX but this time we are doinh 1 infusion every 14 days times 2...i have only 11 lonely B cells and with each small increase i feel worse ..so the dog is waking up ..Dr Specks ordered it to be done slower and only the 2 times instead of weekly times four...please tell me you left that mack truck at the bottom of the ocean somewhere...not really waiting that side effect again:crying:

[Chris G]

Hey Sangye
On my way for my 2nd round of RTX but this time we are doinh 1 infusion every 14 days times 2...i have only 11 lonely B cells and with each small increase i feel worse ..so the dog is waking up ..Dr Specks ordered it to be done slower and only the 2 times instead of weekly times four...please tell me you left that mack truck at the bottom of the ocean somewhere...not really waiting that side effect again:crying:

Good luck Lisa Marie!! I hope you escape without the nasty effects you had the last time.

[Chris G]

I thought I might add a couple of things that I learned during my last infusion, in case anyone is interested. I was bored, and asking questions of the infusion nurse, who surely had better things to do than entertain me.

Anyhow, she told me that they have far fewer infusion reactions to rtx with their AI patients, than cancer patients. That made me feel a little more at ease. We talked a little about immunosupression with rtx. It seems to me that if rtx only kills b cells, then only part of my immune system is compromised by rtx - I still have t cells, and others, to protect me. She agreed, but added that prednisone suppresses the entire immune system. I was feeling pretty safe, until she reminde me of that little fact.

[delorisdoe]

I will try to remember the name of this post in case I ever get rtx

[Chris G]

I will try to remember the name of this post in case I ever get rtx

It's called "Rituxan Use". How hard is that gonna be??? :flapper:

[LisaMarie]

They did it over 5 hours this time...so a little nausea..but tired and bad bone.aches...staying.in bed today....I don t think tje Mack truck listened...or it got scuba gear to come out and get me..chat with ya all latter

[KathyB]

Reading and learning --- what are the "B cells" being discussed?!

[Al]

Reading and learning --- what are the "B cells" being discussed?! Kathy, the B cells under discussion re those that RTX attempts to knock out. (This is a rituxan thread) They are the specific subset of B cells found in the blood that produce ANCA, along with some other antibodies. I do not have time right now to rehash a general discussion of B cells, though I did post a fairly long exposition in an earlier thread. If you like, I will dig through and find it.

Al

[Sangye]

They did it over 5 hours this time...so a little nausea..but tired and bad bone.aches...staying.in bed today....I don t think tje Mack truck listened...or it got scuba gear to come out and get me..chat with ya all latter
Aww, that stupid Rtx Mack truck!! I hope you feel better tomorrow, Lisa Marie. :hug2:

[freakyschizogirl]

Hi all

I'm having a mini dilema at work. I've just had my second cold in a month (and a few days off to rest) and my manager is wondering if this is gonna be a regular problem following my infusions?
I dunno what to tell her, work is stressing me a bit and i ride the bus to work every day and i always get the coughers either infront or behind me, which is, i presume, how i caught the second cold.

I've been googling and cant seem to find anything on what to expect after a infusion and what precautions to take against further illness. Any ideas??

[delorisdoe]

thank you chris...that is helpful.

freaky...

I dont know how to help you with this as I dont miss work unless I am forced to stay in a hospital. I show up for work and try to stay and end up in the er. I am the boss so I suppose I am the one who would be insensitive to you in this situation. I would think that booking those days off after may help. One of my best riends was an employee of mine. She had pancreatic cancer and they had to cut out half of most of her organs. Because they had to cut out a large portion of her stomach and her bowel she would get sick from eating anything and have to go home. I tried not to get angry and resent her as all she did was eat but sometimes she would only work 1 of her 4 shifts so inside it was hard form me BUT...i just tole myself to get over it and suck it up. I had no right to be outwardly angry at her sick days.

good luck.

[mishb]

I also get very annoyed........ and more so these days than before.
I have hardly missed a day off work, except as you said Leigh, for hospital stays. I had 9 days all up in 2011

Some people I work with have so much time off, more than their sick leave entitlements allow and it's just a cold, or for a sprained wrist etc.

I have no problem, if you have the leave time and you truly are ill but my inside thoughts are...... if I can be here, so can you. It is wrong of me to think like this I guess.

I'm sorry Sam but I'm not much help, but if you do have the sick leave time, I'm not sure your boss can ask that question of you anyway.
I know in Australia we can't ask such a thing if you have the leave time, however, most times you do need a doctors certificate to support your leave, but if you don't have the leave time.......I guess that's when I get annoyed.

Maybe things will be better when you get your licence and then you wont have to use the bus.........so you can tell your boss that at the moment you are unsure but it will get better soon.

[freakyschizogirl]

I'm sorry Sam but I'm not much help, but if you do have the sick leave time, I'm not sure your boss can ask that question of you anyway.
I know in Australia we can't ask such a thing if you have the leave time, however, most times you do need a doctors certificate to support your leave, but if you don't have the leave time.......I guess that's when I get annoyed.

Maybe things will be better when you get your licence and then you wont have to use the bus.........so you can tell your boss that at the moment you are unsure but it will get better soon.

I've never been one to ring in sick with a sniffle. If i'm off work its cos i truly cant make it outta my bed to get to work. I worked through the last cold i had prior to this one but had been feeling tired and wanted my body time to rest.

Hopefully when i get my licence it will lessen the occurence of a cold!

You self certify here for 7 days before you need a doctors note,.

[Hammy8241]

Hopefully when i get my licence it will lessen the occurence of a cold!

.

Should help you a lot Sam - Just worried for the rest of the road users then!:wink1:

Get well soon.

[Meredith]

I had my first round of RTX in May of 2011 (4 infusions, 1 a week). I really had no problems taking it except that I had some bruising show up on my arms. I had Reclast the month before and had a severe reaction to it so I am still unsure if the brusing came from that or the RTX. Went to the doctor for a recheck 2 weeks ago, inflamation up from the last blood test but still showing "normal range". Go back again in March. Only medicine I am on now is vitamins, bactrim, nexium. I have felt the best since getting the RTX since I was diagnosed approx. 7 years ago. Yes I get tired, I just go to bed early. I work full time and except for being in the hospital because of the Reclast I have missed no work. We get off on Fridays at 11:30AM and I scheduled my RTX then. I have no kidney, lung involvement. Mine is ears, eyes and throat (which I have to have stretched periodically (3 times so far - out patient). If I could just get my weight where it was 7 years ago I would be happy. Is anyone on fluid pills? My face looks swollen but my feet seem to be OK.

[Chris G]

Hi all

I'm having a mini dilema at work. I've just had my second cold in a month (and a few days off to rest) and my manager is wondering if this is gonna be a regular problem following my infusions?
I dunno what to tell her, work is stressing me a bit and i ride the bus to work every day and i always get the coughers either infront or behind me, which is, i presume, how i caught the second cold.

I've been googling and cant seem to find anything on what to expect after a infusion and what precautions to take against further illness. Any ideas??

Hi Sam!

I agree with Mishb about your boss even asking that question! I think here in the States, that's a no-no.

Althought we may be immunosuppressed, we come into contact with the same viruses and bacteria that the normal population does. Does that mean that we will catch MORE colds than normal people? I don't think it necessarily does. Most of us are practicing better prevention than the normal population too. It may just be that a normal cold might be more difficult to shake. Personally, I've had 2 colds since having rtx, and the opposite has been true. Both of these colds have been MILDER and SHORTER than usual!

Keep covering your face with your scarf, and hold your breath when necessary!! I do it too. That still makes me giggle. :tongue1:

[delorisdoe]

when I was first diagnosed my original immunologist offered to give me some signed work notes that all I had to do was fill in the date. I refused this. I would give your boss a scond chance. she probably said it in frustration and she should not have. what you need to do is document the date and time she said this and keep record of it. IF she says it again you should speak up and tell her how you feel. If the behavior continues then something needs to be done. Like I said...I knew my friend could not help being so sick but as a boss it still frustrated me A LOT. She is one of my best friends and I understood her more than anyone else she knew because of my wegeners journey but I still as a boss was frustrated. Your boss will just have to suck it up.

[Chris G]

Sam - I can't remember your line of work, but maybe in some cases, a boss might just need to know for scheduling purposes. This would be helpful in your case, right Leigh?

[delorisdoe]

It does. She may be testing the waters to see how much you will let her say.

[BrianR]

Marta is in Edmonton as she had her RTX infusion 2 days ago. She has been exposed to Chicken Pox and now has a bunch of stuff to deal with. I am dropping work today and tomorrow to go get Hana (my daughter) and bring her back to Jasper. Here's how my boss is handling it - "don't ask me for time off. Take whatever you need and tell me. Don't come back until you are ready." He has been like this since day one of Marta's diagnosis on May 6th 2010. That's one of the reasons I have been with this company for 34 years (I'm 52).

[pberggren1]

It is so nice to have employers like that Brian. I once worked for some nice people like that.

[Al]

Marta is in Edmonton as she had her RTX infusion 2 days ago. She has been exposed to Chicken Pox and now has a bunch of stuff to deal with. I am dropping work today and tomorrow to go get Hana (my daughter) and bring her back to Jasper. Here's how my boss is handling it - "don't ask me for time off. Take whatever you need and tell me. Don't come back until you are ready." He has been like this since day one of Marta's diagnosis on May 6th 2010. That's one of the reasons I have been with this company for 34 years (I'm 52).

And this is in the middle of what must be your busy season. I am impressed, Brian.

Al

[Al]

I'm having a mini dilema at work. I've just had my second cold in a month (and a few days off to rest) and my manager is wondering if this is gonna be a regular problem following my infusions?
I dunno what to tell her, work is stressing me a bit and i ride the bus to work every day and i always get the coughers either infront or behind me, which is, i presume, how i caught the second cold.

Sam, I don't know how British labor laws work, but from my perspective, your boss is more worried about what her boss thinks than regulations. Having said that, I suggest that, while on the bus, you always wear a face mask--rated R95 or better, the kind painters use. It keeps the coughers at bay; they assume you are contagious.

Al

[freakyschizogirl]

I think my manager was asking just as a concern for me. She has been very supportive as i was diagnosed inbetween my interview and actually starting employment there and i have kept her up to date, as far as i can, every step of the way.

I work as a carer which includes early mornings and the ocassional sleep in so i'm not only thinking of myself when i chose to take some time off. I did work the sleep in before deciding i was too worn and tired to do the shift the next day. I think 2 colds in a month is a sign of me being run down and needing to rest, insteading of choosing to take time off for a petty cold. Surprisenly this time the cold did not go to my chest as it usually does, so maybe i was right?

As for a scarf, well, i couldnt hold my breath longer if i tried and people think you're gonna start some sort a trouble with a scarf covering your nose and mouth!

And Al - thanks for the suggestion but i dunno if 1) thats a little extreme and 2) how uncomfortable the other people on the bus would be with me having a mask on! Tho it would improve my looks no end!:w00t:

[KathyB]

If you can direct me to the possible thread, I'll research! Thx so much!!

[Sangye]

Sam, when I took the metro to DC to see the Dalai Lama last summer I wore a face mask if it was really crowded. Since I have almost no hair everyone probably thought I had cancer of course. Oh, the stares! LOL

[Al]

And Al - thanks for the suggestion but i dunno if 1) thats a little extreme and 2) how uncomfortable the other people on the bus would be with me having a mask on! Tho it would improve my looks no end!:w00t:

Sam, it's not your looks I'm concerned about; you're beautiful as you are, and I'm sure you'd look just as good if you fell asleep into a plate of spaghetti. But making other people on the bus uncomfortable is precisely the point: It keeps their philandering microbes further from your face. I use the technique on the plane all the time.

Al

[freakyschizogirl]

Sangye and Al - you guys crack me up! :w00t:

After writing the last post i was on a bus and a woman was coughing and not even bothering to put her hand to her mouth. Charming. So glad i had my scarf on!

[mishb]

I catch the train every work day, an hour there and an hour back. I also use a scarf and/or lean my elbow against the window and use my hand to cover my mouth and nose.

A funny thing happened last week and my daughter and I couldn't help laughing.
This lady sitting opposite me was sniffing to the extent of being really annoying and then started sneezing without covering her mouth, then the sniffing again.
A lady sitting next to this germy lady reached into her handbag and pulled out a little packet of tissues and said (loud enough for everyone to hear) "here use these".
The germy lady didn't take them and look deeply offended, especially after we all laughed, but it did the trick, we didn't hear another sniff or sneeze from her for the rest of the trip.

I'm with you Sam, I just don't think I can go as far as wearing a mask, I know I probably should and all of the Japanese visitors to our Country seem to have no problem wearing them.
...... sometimes after getting off the train, I really feel like I need a shower though.

[Sangye]

Ten points to the woman with the tissues for being direct and hilarious all at once. :thumbsup::w00t:

[Palmyra]

My daughter had RTX as primary therapy along with prednisone in 2006 immediately after diagnosis, initially treated with a series of four infusions, two weeks apart. She had no maintenance drugs between infusions or after, and was able to tapper pred very quickly. Since that time, I think her medical specialists at Mayo have changed protocols for subsequent dosing/intervals.

She initially made it 12 month+ between infusions. More recently her infusions have been every 6 months, with two treatments/two weeks apart. B-cell repopulation/return of original symptoms were the previous index for need. Now it appears to be a bi-annual event regardless.

Her primary disease was pulmonary/joint/skin issues..... now she has additional sinus involvement and secondary infection complications, but does not fully flare on the 6 month cycle. She does not tolerate immuran, and methotrexate was of no benefit.

Good luck!

[freakyschizogirl]

Ten points to the woman with the tissues for being direct and hilarious all at once. :thumbsup::w00t:

Indeed! Maybe i need to become more direct??

[LisaMarie]

Anyone who wants to come tow the mack truck away is more then welcome.
I do feel better than Tuesday though and the nausea is about gone.....next dose the 24th....I read yall post about the mask...I have been blessed to have to wear one most of the time...per my ID doctor...I finally have almost normal IGG before this dose RTX....It disappeared after my last RTX round and that wonderful 14 day stay in the hospital....I am on prophalytic bactrim DS and acyclovir daily and when I want to live dangerous and take my sons out to eat I double up for a day or two....DR specks says I will be fine just washing my hands...but I am out too much and see people cough and sneeze without covering up ...so better safe than sorry...I have to wear a N95 at the hospital when I work ....right now it is just when I leave my office....I only have 11 lonely B cells last could and the beast is waking up so I may have to do cytoxin and RTX...I do not tolerate imuran or cellcept or MTX...so pray this works...I have a new spot in my left bronch.....I really don t want CTX....I am moving to a smaller home with mostly wood floors so it will be better for me and my youngest son ....life is full of changes...but as i see it I am still living and after hearing about the young lady that has had 73 surgeries with WG...i push hard to go to work and get out of bed and live day by day...she is truly an inspiration....:biggrin1: