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

[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.