RTX for maintenance

[freakyschizogirl]

I've been caught out with my second flare in two years. I was on MTX for maintenance but this time round, as before, it wasn't holding remission for me.

The wonderful Dr Jayne from Addenbrookes has put me back on the good stuff of RTX 2 doses two weeks apart, which I've just finished and yearly top ups from here on in.

Who else is having six monthly/ yearly top ups and how are you doing?

Just curious as i tolerate RTX well but being that RTX is a relatively new drug it does worry me that my body could get used to it if used over a number of years.

[gilders]

I am currently on rtx with infusion every 4th month (as per Ritazarem trial protocol). I was very ill after my last infusion, but believe it was a bug/virus that I caught rather than a reaction to rtx.
Unfortunately my kidney function has declined to the point where I need a transplant or dialysis whilst on rtx.
I also worry about long term side effects and the possibility that your body may "get used" to it and it no longer works.

[drz]

My Weg expert at Mayo shares your concerns so my treatment plan is avoid RTX again unless it is deemed essential to controlling my Wegs. He is involved in a lot of the major research in this field and often shares information about the latest research studies that might pertain to my treatment of Wegs. To date I am unaware of any research studies pertinent to this issue. And no better alternatives to regular treatment with RTX have yet been found for controlling Wegs for many people so it is not like you have a lot of better options.

I know that I have developed allergies to several antibiotics that I used to rely on the treat my frequent infections that go along with my Wegs, mainly ear and sinus infections and bronchitis. So I am concerned that RTX could become another drug that might not work for me if I use it frequently. Maybe my Mayo doctor shares my concern due to my history of developing allergies or maybe he has some hunches or impressions from his experience and observations about what their research might suggest in the future about frequent usage of RTX for treatment of Wegs. So far I have been fortunate that my mainteance drugs of AZA and pred has controlled my Wegs adequately so i have not yet needed RTX again but that could easily change any day. I maxed out on CTX so that is not an option for me again.

[nagesh]

my son 19 year old 7 years back diagnosed with WG, For remission induction he had Cyclosposmade six monthly infusions, there on on aza for maintenance,
had kidney flare 3 years back took 2 infusions of 1 gm RTX infusions in a gap of 15 days further on aza for maintenance, recently 9 months back again had kidney flare took 2 infusions of 1gm RTX in a gap of 15 days. Now, Rehumatologist has planned to put him on RTX 500mg once in six months for two years as maintenance by removing all other maintenance drugs.

[Alysia]

Mtx never worked for me. Tried more then a year.
Rtx is used both for flares and for maintenance in my case. 2000mg when wg is active. 1000mg in remission. Which didnt last on this doze. I get rtx since 2013 every 6 months.
My wg dr. (Btw, Sam, he is consulting with prof. Jayne) has experience with rtx many years now and he is not concerned at all. He says that the more we use it to keep the WG quiet, the greater the chance is that the immune system will forget to attack itself.

It is interesting how they think differently in different countries....

And.... It's not a nice question, but is it possible that money issues are also involved in the decision making about rtx ? Seems that they dont give it as they should in the US ? I wonder about Australia... Israel & UK sounds similar... as I remember from dr. Phil he got it since 2011 every 6 months.

[MaxD]

I've had two infusions (1000 mg each) for maintenance since remission, each about 10 months apart (the docs monitored my B-cells and when they showed up again, I got an infusion). It's been 7 months since my last infusion and peripheral B-cells are still 0. My docs are thinking of giving me a 500mg infusion the next time the B-cells show up. After that, I'm not sure what they'll decide - could be just wait and watch. I don't have kidney involvement however.

[mishb]

It is interesting how they think differently in different countries....

And.... It's not a nice question, but is it possible that money issues are also involved in the decision making about rtx ? Seems that they dont give it as they should in the US ? I wonder about Australia... Israel & UK sounds similar... as I remember from dr. Phil he got it since 2011 every 6 months.


In Australia the doses are basically the same as yours and Sams.
It is also used a first option for many newly diagnosed now

[Gab122]

I'm wondering about this idea that if used too much ritux could become ineffective. Can someone fill me in on this theory or is it proven to be true? Is it a common belief? My dr's never mentioned it.
Thx
Gab

[Dirty Don]

I suppose rituxin could lose effectiveness over time of application, most drugs do lose potency over time due to overuse, etc. But, in asking that, you may be concerned over nothing. If one goes that long on Rituxin and still doesn't start to recover, there are deeper problems...and, frankly (something else for you to ponder), undue concern causes stress & that may be the more dangerous track. Best to you.

[gilders]

He says that the more we use it to keep the WG quiet, the greater the chance is that the immune system will forget to attack itself .

I hope you're right. My periods of remission have grown between each replapse/flare, so perhaps immune system does get used to Wegeners lurking around and doesn't bother to deal with it.

[freakyschizogirl]

I was on the Ritazeram Tril but cos of my flare i'm now off, which sucks. I really liked doing the trial. They're still going to follow me as like a side note i guess haha.

Sorry to hear that you will be needing Dialysis or a transplant, thats a rough ride.


I am currently on rtx with infusion every 4th month (as per Ritazarem trial protocol). I was very ill after my last infusion, but believe it was a bug/virus that I caught rather than a reaction to rtx.
Unfortunately my kidney function has declined to the point where I need a transplant or dialysis whilst on rtx.
I also worry about long term side effects and the possibility that your body may "get used" to it and it no longer works.

[freakyschizogirl]

My Weg expert at Mayo shares your concerns so my treatment plan is avoid RTX again unless it is deemed essential to controlling my Wegs. He is involved in a lot of the major research in this field and often shares information about the latest research studies that might pertain to my treatment of Wegs. To date I am unaware of any research studies pertinent to this issue. And no better alternatives to regular treatment with RTX have yet been found for controlling Wegs for many people so it is not like you have a lot of better options.

I know that I have developed allergies to several antibiotics that I used to rely on the treat my frequent infections that go along with my Wegs, mainly ear and sinus infections and bronchitis. So I am concerned that RTX could become another drug that might not work for me if I use it frequently. Maybe my Mayo doctor shares my concern due to my history of developing allergies or maybe he has some hunches or impressions from his experience and observations about what their research might suggest in the future about frequent usage of RTX for treatment of Wegs. So far I have been fortunate that my mainteance drugs of AZA and pred has controlled my Wegs adequately so i have not yet needed RTX again but that could easily change any day. I maxed out on CTX so that is not an option for me again.

That is interesting drz. I didnt even think about antibiotics or future infections. Let me now what your consultant says ongoing. I would be interested to know what the latests research says. I didnt tolerant AZA or Mycophenolate. I'm too young for Cytoxan. This latest round of RTX has knocked me out a but more than i was expecting although i worked out it was my 12th infusion in 6 years haha! So that might explain why.

[freakyschizogirl]

Mtx never worked for me. Tried more then a year.
Rtx is used both for flares and for maintenance in my case. 2000mg when wg is active. 1000mg in remission. Which didnt last on this doze. I get rtx since 2013 every 6 months.
My wg dr. (Btw, Sam, he is consulting with prof. Jayne) has experience with rtx many years now and he is not concerned at all. He says that the more we use it to keep the WG quiet, the greater the chance is that the immune system will forget to attack itself.

It is interesting how they think differently in different countries....

And.... It's not a nice question, but is it possible that money issues are also involved in the decision making about rtx ? Seems that they dont give it as they should in the US ? I wonder about Australia... Israel & UK sounds similar... as I remember from dr. Phil he got it since 2011 every 6 months.

Oh it is most definitely about money - a single round of RTX costs the NHS £3,000. £1,000 of that is just for me to sit in the chair for 6hrs. Its madness. I'm fortunate that i come from one of the bigger/ richer counties in the UK. Sadly lots of other people are less fortunate in other parts.

The Prof didnt seem too concerned about yearly infusions. Although i think his thinking has changed somewhat over the years as a few flares ago he did not like to overuse RTX but now its different.

[freakyschizogirl]

I hope you're right. My periods of remission have grown between each replapse/flare, so perhaps immune system does get used to Wegeners lurking around and doesn't bother to deal with it.

I've never had a remission longer than two years - but that falls into what Dr Jayne expected and told me. Cant help thinking he made a self-fulfilling prophecy out of me!

[Alysia]

maybe we can make our own poll: we have enough weggies who are on rtx for many years, we can make a poll asking: how many years do you have wg, how many years are you on rtx, in what frequency, what changes do you see over time - for better, for worse, do you think that the rtx is still as strong treating you as it was in the beginning ? etc. just need some technical help in building the poll. what do you think, my friends ?

[nagesh]

Alysia
really it is good idea, we should ask for RTX for remission induction and RTX for remission maintenance both.

[Alysia]

first we need to think about all the questions that we want to ask. then we need to build the poll - where is andrew ? is it possible ?
thanks for your input nagesh.

[Gab122]

Alysia! Brilliant idea!! I LOVE it!
Andrew can we somehow have a way to create polls? That would be fabulous info to be able to access!!
Where do you get these brilliant ideas Alysia! Bravo!!! :thumbsup:

[blm]

Survey Monkey?

[Gab122]

Ya know what i was wondering about today - (this could be a Poll) .... They say that GPA might be 'activated' by an infection or environment/chemical or such.... I wonder if any of you all recall an infection prior to your symptoms starting that eventually led to GPA diagnosis? I don't think I had any infection myself before my May symptoms started in my ears. I don't think I had any chemical exposure but have I used spray paint w/o fully following directions/ or cleaning products? yes... If we had a poll here, maybe we'd get down to the bottom of what activates this disease? Maybe we all had something weird in common like owning bearded dragons w/ fungal problems at some point prior to the disease starting. I did.
:wtf:

Maybe we could make some great contribution to understanding this disease!:thumbup:

[kaysee]

I had rituxan in July 2014 and again in October 2014. I went into remission and have not had a flair since. I guess I am one of the lucky ones. My doctor did not want to give rituxan for maintenance as he felt it was the best treatment for any flare should that happen in the future. In fact I am only on arava to help reduce inflammation and no other typical maintenance drugs. My Dr. said that if it was used for maintenance it could (not would) reduce its effectiveness for future treatments of flares. I'm sure if I had a flare up he would be using it again. I am very blessed that I have been WG free for two years now.

[pwc51]

For me I have had 3 pairs of RTX infusions for flares. Using MTX in between. I am just about to have another pair as I have flared again (4 flares in 7 years).

I had asked my rheumatologist for maintenance RTX but he really did not want to go down that route. I am sure cost is part of the reason but as it is currently the drug of last resort there is a danger it could stop working. Finally he said, as it kills the immune system I could easily pick up some other 'bug' that could kill me,and he did not want to do that.

As a result I will be staying on the same regime.

[Gab122]

For me I have had 3 pairs of RTX infusions for flares. Using MTX in between. I am just about to have another pair as I have flared again (4 flares in 7 years).

I had asked my rheumatologist for maintenance RTX but he really did not want to go down that route. I am sure cost is part of the reason but as it is currently the drug of last resort there is a danger it could stop working. Finally he said, as it kills the immune system I could easily pick up some other 'bug' that could kill me,and he did not want to do that.

As a result I will be staying on the same regime.

My doc is using ritux as the drug of choice to start my treatment. I haven't heard it called the drug of last resort. I think there must be a lot of varied opinions on ritux among doctors. It is fairly new as a treatment for wegs gps. They must still be learning a lot about it.

[gilders]

I am currently in a trial to compare the effectiveness of RTX as maintenance therapy with more traditional maintenance drugs such as Azathioprine and MTX. I'll be heading off for my next RTX infusion soon. For anyone interested in the trial, it's called RITAZAREM.

I'm hopeful that the trial will reveal some positive results. When the trial completes, I'll post results as soon as I'm aware of them.

[nagesh]

Rehumatologist treating my son earlier two years back used to say Rituximab should be reserved to future relapses,
and maintenance with Azoran.
now, he is of the opinion he will give Rituximab for maintenance @ 500mg every 6 months and stop after two years,
what if relapse again?
Again remission induction with Rituximab @ 1gm 15 days once twice.

[gilders]

My maintenance is 1g every 4th month. I maybe showing signs of activity. I don't think they will give me a higher strength of RTX for a flareas another patient on the same trial as me had a flare and they stopped RTX to replace with another therapy. I'm running out of options though as I can't have Cyclophosphamide and some other traditional "Wegener's drugs" due to severe kidney failure. I think Mycophenalate is kidney friendly, so that might be the choice.

[Alysia]

Something to cheer you all up
??????????? - ??????? ????????? ????? ?????? ????????? ? ????? ?????? (http://www.medicalmedia.co.il/publications/ArticleDetails.aspx?artid=6397&sheetid=481)

Its in Hebrew. An article in a journal for rheumatology talking about the biological meds for arthritis diseases. It is written that rtx (they call it mabthera in Israel) is keeping its efficiency over time.

[Gab122]

Something to cheer you all up
??????????? - ??????? ????????? ????? ?????? ????????? ? ????? ?????? (http://www.medicalmedia.co.il/publications/ArticleDetails.aspx?artid=6397&sheetid=481)

Its in Hebrew. An article in a journal for rheumatology talking about the biological meds for arthritis diseases. It is written that rtx (they call it mabthera in Israel) is keeping its efficiency over time.

Alysia, I got the following info from my dr today: confirms your info!

"As for your question regarding treatment with rituxan, it is not used as a last chance treatment and does not become less effective with repeated use. We have patients who have been on this treatment for years with no flares and some who have not needed more infusions because of its efficacy."

Woot woot! 👍😊🎉