Rituximab - Is it really the answer?

[Daggar]

Hi Everyone! Hope today's norm is better than yesterdays! It has been a very long time since last posting even though I've been lurking and keeping up on news whenever I get a chance. Holly (aka ginger) has been relatively healthy over the past 2.5 years -- other than the typical side effects from meds. Unfortunately, she tired of those effects and was avoiding her meds off and on over a 3 month period. She had her first flare in late September and was admitted to the Children's Hospital for pulse treatments of methlypred. There weren't many indicators this time around other than some skin issues (facial), a nose ulcer and an overall feeling of lethargy. It was controlled fairly quickly and she was released. Since that release her kidney creatinine levels have increased a bit and she was admitted again over the weekend for a kidney biopsy to get a better picture of what the cause is. We have a new Rheumy who is 'very' aggressive in using rituximab while the Nephrology team are more cautious as there is a lack of data concerning long-term effects. I mistakenly thought that Rituximab would replace the need of current meds (ie pred & immuran) so I'm worried about adding another drug to the mix when maybe her normal schedule would of worked? Is that misguided? There is a lot of 'confusing' literature regarding the use of rituximab and I hate making misinformed decisions. The best info usually comes from the people who have experienced it firsthand. Any suggestions/feedback regarding rituximab would be greatly appreciated. Thanks!!

[Sjap0655]

Hi I'm fairly new to this group however I have had two infusions for Rutixmab to reduce kidney "flair" or involvement associated with WG's. I was blessed in that, my creatine function and kidney numbers have been normal, my flair was found during a routine ultrasound and later bioposied to show that indeed necrosis was present and presenting a lesion/cyst on top of my kidney. The treatment plan CC decided on was 2 infusion treatments, bactrium (double dose), 60 mg pred, folic and 20mg of methotrexate.

Is RTX the answer for WG's? I think nothing is a 100 percent sure. I think the thing we must remember is the Rutimab is not a new drug; its just new to being used for the treatment of Wegeners. My spouse is in the medical field and the pharmacology behind the drug is much more targeted and if works can be a better alternative to some of the other drugs. But what long term affects it has on each individual is still to be determined. Some articles I've read can be found on UpTODAte: Initial immunosuppressive therapy in granulomatosis with polyangiitis (Wegener's) and microscopic polyangiitis (http://www.uptodate.com/contents/initial-immunosuppressive-therapy-in-granulomatosis-with-polyangiitis-wegeners-and-microscopic-polyangiitis?source=outline_link&view=text&anchor=H12#H12)
titled: Initial immunosuppressive therapy in granulomatosis with polyangiitis and microscopic polyangiitis,

Also here is a link to a Rutuxan pamphlet with some information about the drug as well. http://www.gene.com/download/pdf/rituxan_prescribing.pdf

[Dirty Don]

Having just completed my first relapse flare, I'm glad they got to her's early. As for rtx, it is my understanding that: it IS effective, is the next 'tier' and perhaps last at this time drug for controlling AI, and it isn't mixed with other AI controllers. Pred is not necessarily gone on rtx...it's for inflammatory purposes, not completely controlling AI. I wouldn't worry about rtx too much as it's track record seems to be pretty good thus far aside from some low grade reactions to it. Best of luck.

[pberggren1]

Gary, I would def go for RTX vs CTX. I have used RTX to treat 2 flares successfully and am now using it as a maintenance drug as well.

[Daggar]

Thanks for the quick replies.... it is reassuring that rtx can be another weapon. I just came back from the hospital and my how things change quickly when dealing with multiple doctors in multiple departments. Holly's biopsy came back with no signs of any active disease or inflammation (good & bad news -- unfortunately just a result of earlier damage when first diagnosed 3 years ago) so the nephrologists have decided to continue with her current treatment schedule (imuran) and stick with the current 10mg of pred (down from initial 60mg 5 weeks ago). There are no signs of WG at present in lab work or physically. Holly was worried they were going to go ahead with the rituximab without the biopsy result but I found out that she misunderstood the doctor. Anesthesia can do that ....

I know the Rheumy is still very high on rtx but as a parent it is really hard to understand why it is needed if the disease isn't present. Another drug on top of an existing cocktail -- wouldn't it be prudent to save it until it is really required? I understand the need to be aggressive when kidneys are involved but it still scares the crap out of me. I'm not sure if I read right in one of the rtx studies/articles that the effectiveness of the drug can wean over time and usage? Does anyone know if that is the case?

[Daggar]

In catching up with some of your posts regarding rtx I've got a better understanding of where the Rheumy is coming from. If it takes 2-3 months to work they are probably being proactive. Still would sure like to know if the current treatment would suffice if Holly stays the course without missing meds. Tough decisions in her graduation year..... she can't afford to miss a lot more school.

[Dirty Don]

In catching up with some of your posts regarding rtx I've got a better understanding of where the Rheumy is coming from. If it takes 2-3 months to work they are probably being proactive. Still would sure like to know if the current treatment would suffice if Holly stays the course without missing meds. Tough decisions in her graduation year..... she can't afford to miss a lot more school.

Your concern for time is understandable, but much of the drug dosage and type process is hit and miss as proscribed until you and your docs find a stopping point...then........

[drz]

Thanks for the quick replies.... it is reassuring that rtx can be another weapon. I just came back from the hospital and my how things change quickly when dealing with multiple doctors in multiple departments. Holly's biopsy came back with no signs of any active disease or inflammation (good & bad news -- unfortunately just a result of earlier damage when first diagnosed 3 years ago) so the nephrologists have decided to continue with her current treatment schedule (imuran) and stick with the current 10mg of pred (down from initial 60mg 5 weeks ago). There are no signs of WG at present in lab work or physically. Holly was worried they were going to go ahead with the rituximab without the biopsy result but I found out that she misunderstood the doctor. Anesthesia can do that ....

I know the Rheumy is still very high on rtx but as a parent it is really hard to understand why it is needed if the disease isn't present. Another drug on top of an existing cocktail -- wouldn't it be prudent to save it until it is really required? I understand the need to be aggressive when kidneys are involved but it still scares the crap out of me. I'm not sure if I read right in one of the rtx studies/articles that the effectiveness of the drug can wean over time and usage? Does anyone know if that is the case?

My Weg expert at Mayo agrees with your thinking and he has his name on dozens of studies of GPA and Wegs. RTX is my back up plan when and if it becomes necessary but it is AZA till then. Sometimes they tweak the dosage and increase the steroids when needed.

[mishb]

I don't know anything about RTX except what I have read on here.

I just wanted to say that I'm sorry to hear Holly has had some troubles and I remember the first time you were on here.
You are not only a fantastic parent but a terrific advocate for Holly. You did so much and found out so much the first time around and I'm sure that is what got Holly into a very comfortable state for the past couple of years, whereby she could continue with her schooling and go out with her friends etc, (and probably also thinking that she didn't need her meds sometimes)......and you made that happen (not the bit about the meds) - and she set a great example and great hope for all of us.

I'm glad you and the doctors got on to this flair quickly and I'm glad that the biopsy didn't show any new damage.
I guess finding out the hard way about taking her meds, is the jolt she needed to stay on top of things.

Take care

[Daggar]

My Weg expert at Mayo agrees with your thinking and he has his name on dozens of studies of GPA and Wegs. RTX is my back up plan when and if it becomes necessary but it is AZA till then. Sometimes they tweak the dosage and increase the steroids when needed.

THanks Drz, I hope she stays in remission (confusing word with WG) with the understanding she is very lucky to get a second chance to follow the current treatment plan. She was on Imuran, perindopril and atorvastatin -- the latter two as a low dosage to protect kidneys (blood pressure/cholesterol). Not a lot of meds which seemed to be working well for nearly two years. She is now dealing with the fall out from the pred and that may be enough to keep her on track in the coming weeks/months/years. It is nice to know that rtx is an option if she doesn't stay in remission in the future. Are you maintaining GFR?

[Daggar]

I just wanted to say that I'm sorry to hear Holly has had some troubles and I remember the first time you were on here.
You are not only a fantastic parent but a terrific advocate for Holly. You did so much and found out so much the first time around and I'm sure that is what got Holly into a very comfortable state for the past couple of years, whereby she could continue with her schooling and go out with her friends etc, (and probably also thinking that she didn't need her meds sometimes)......and you made that happen (not the bit about the meds) - and she set a great example and great hope for all of us.

Thanks Michelle but I believe I'm only a 'passenger' on this crazy ride. My toughest experiences have been when you have to make such quick decisions without the knowledge base to do so -- although this drastically pales in comparison to the smallest of issues Holly has experienced. I recall the first time I posted on this site and like many I suspect -- it was a bunch of questions for Jack (who I fondly refer to as the Godfather of WG). Since that time I have received invaluable info/input from a number of people on here which made my job a lot smoother. Holly responded to the spirited stories of Cindy and Marta while I gathered as much info from Jack, Marta, Phil, Drz, Sangye, Debra, Dee, Palmyra, Weggieparent, etc, etc, etc. Thanks for all the advice!! Holly is now at home and resting -- it is the very first time I have seen a chink in her armour (tough kid) but she is happy that she doesn't have to add more treatments at this time.

[pberggren1]

Gary, effectiveness of most drugs goes down over more use and time.

Holly is quite young and relatively new to Wegs and maybe RTX is needed in her case. But it seems like her case is not too severe and if she can be kept in remission with the Aza then I would probably want to stick with that and keep the rtx as maintenance down the road only if needed. I use the RTX every 6 months but I have very severe disease where one flare up could mean a pine box for me.

[Geoff]

I agree with Phil here as its always been put to me that RTX has been kept back, not just because it is expensive but that they like to have it in their armoury as a 'back stop'.
In my 5 years since DX I have had MMF, Cyclo, Aza, Alemtuzimub and now for the past 18 months RTX.
Once the frequency of RTX was adjusted to suit my sizeable bulk, i.e 4 month infussions and not 6, then I have settled down and enjoyed a reasonable remission.
I would suggest Daggar that keeping a light touch with the meds is the way to go, but its nice to have a high pressure hose to put the fire out if its needed!!

[whatthewhat]

Hi - Rtx is the drug of choice you could say, for the rheumy team at Children's Hospital Los Angeles - they have treated many children with wegs - more than half the country put together, easily. They have not published because they are so busy, but they are avaible to consult on cases from other docs if the docs call them. Rtx saved our daughter (and her bladder and her fertility and...) I am very happy with the one-two punch of mtx & rtx. Her two infusions have sort of re-set her immune system. Pediatric Wegs has usually a different progression and should have different treatment protocols. A biologic that specifically targets as needed is reassuring to me since bones, muscles, and CNS are still developing for teenagers.