Rtx efficiency - long time use - Poll

[Alysia]

Readers who are not members, pay attention:
you can vote. please do. Thank you ♡
~☆~☆~☆~☆~☆~☆~☆~☆~☆~☆

For those who are on rtx:

Do you find that over time, rtx loses its efficiency, or is it as good as it was in the beginning ?

For members: Please write in the comments how many years do you have wg, how much time do you get rtx, and how many treatments did you get so far.

Thanks ♡♡♡

P.s. you "count" as a treatment the number of rounds. We all get it in 2-4 IV with one week or two weeks intervals - count it as one treatment.

P.s. 2. If rtx didnt work for you, please dont vote.

[Alysia]

I have wg for 8 years (since dx).
On rtx 4 years.
So far 8 treatments. (Every 6 months)
I don't find that it loses its efficiency.

[mishb]

I've never had it so I can't answer, but I am very interested in the outcome of the responses

[nagesh]

my son has wg since 7 years, on rtx for about 3 years twice for remission induction for a flare and once for maintenace. further, the planned cycle is once in 6 months for maintenace for about two years. so far it has worked well

[Jaha]

I was dx'd 6 years ago
I have been on RTX for 4 years
I have had 9 rounds of RTX
It is the only treatment that works for me

[Gab122]

I have WG for 2.5 months (since dx 8/1/16. Symptoms started 5/1/16)
On Ritux 2.5 months almost.
So far 1 treatment. (Next is 3.5 months after last tx Dec. Plan after that is every 6 months per doc)
So far, so good.

[Alysia]

It is the only treatment that works for me

For me as well.

[blu4runner]

I was diagnosed 4.5 years ago. Treated with Methotrexate for 18 months without much success.
Rituximab finally got me into remission I have had 2 series of the 4 week infusions and get a booster infusion once every 4 months.
I have to say that it seems to work pretty good for me

[MikeG-2012]

Three years for me and so far, so good...

[txrepub4God]

Diagnosed with Wegs in March 2015. Originally took cyclophosphamide & steroids for 6 months, but got critically ill from it. Imuran next, had extreme nausea & stopped after 6 weeks. Got Rituxan in August 2016; it has not helped me at ALL & I've been very ill ever since. I'm not sure what my next option is as far as drugs go, but I'm supposed to have another round of Rituxan in 4 months. I haven't been in remission yet.

[deawndillard]

8 years. They must do it different with some. Mine has been 5 different sets. A set for me is I do a treatment once a week for 4 weeks. We watch my blood and urine. If the levels and symptoms go down i don't get another round. So far ( knock on wood) each round has put me in remission.

Sent from my SM-G925T using Tapatalk

[Alysia]

Thanks for all those who commented and voted. Please make sure that you voted above and only in relation to the question about rtx effieciency. If rtx never worked then none of the options above are relevant. Please share and ask more friends to vote. It cant be valid without many friends voting.

[Pete]

I've had GPA for six years
I'll have my 4th rtx treatment on Monday 10/31)
Rtx is the only immunosuppressant I've taken since August 2015. I'm in remission.

[Alysia]

If we will not have many friends voting, the Poll worth nothing because it cant be valid with such a little sample. andrew can readers who are not members also vote ?

[pwc51]

I am only given RTX when I flare. 4 flares in 7 years at roughly equal intervals. Last of latest pair of infusions was yesterday! I have asked about its use for maintenance by my rheumatologist seems reluctant to go down that route. I am on methotrexate in between flares.

[andrew]

andrew can readers who are not members also vote ?

The can now :)

[Alysia]

The can now :)

Wow :) Thanks a lot andrew. you are the best ♡
I also saw that we now get a notification for quotes of our posts :) so awesome :)

[Alysia]

It seems that one cant vote if he comes with the taptalk or through the site for mobile. if you use the mobile, press on "view full site". then you will be able to vote.

[dlynnsmith]

I have had 3 rounds of Rituxan and was just told I was in remission. I have 3 more rounds scheduled. I have not been told yet what my maintenance will be.

[me2]

I just had Rituxan today. I went two weeks over the 6 month mark and flared. My doc came to visit and he said he hopes that after a couple years or so of 6 month treatment I might have remission. He has at least one other patient who had that experience. First he wants me off prednisone. Then off of Methotrexate. Then off of Rituxan. This is the order of toxicity.

[Alysia]

I have had 3 rounds of Rituxan and was just told I was in remission. I have 3 more rounds scheduled. I have not been told yet what my maintenance will be.

Thank you for sharing and welcome to the forum. I am glad the rtx brough you to remission. I hope you will stay there. if you feel like, please share your story on the "new members introduction".

[Alysia]

I just had Rituxan today. I went two weeks over the 6 month mark and flared. My doc came to visit and he said he hopes that after a couple years or so of 6 month treatment I might have remission. He has at least one other patient who had that experience. First he wants me off prednisone. Then off of Methotrexate. Then off of Rituxan. This is the order of toxicity.

I doubt mtx is working for you if 2 weeks late of rtx took you out of remission. for me it never worked so I just stopped it when I first got into remission.
For me as well 6 weeks late on rtx and I was out of remission. not back yet.

[Gab122]

It seems that one cant vote if he comes with the taptalk or through the site for mobile. if you use the mobile, press on "view full site". then you will be able to vote.

Where does one find "view full site". I am on an iPhone mobile mode. (Not tapatalk right now) and I don't see where it says that.

[Alysia]

I dont have iphone. in my phone I press at the left side down, get list of options. press on "ask site for desktop" (its in Hebrew, so sorry if the translation is not as it is).

[Gab122]

Where does one find "view full site". I am on an iPhone mobile mode. (Not tapatalk right now) and I don't see where it says that.

andrew - do you know how to view in desktop mode on an iPhone? See quote please. Thanks!

[andrew]

andrew - do you know how to view in desktop mode on an iPhone? See quote please. Thanks!

It's all the way down the bottom of the page when you view it on a mobile. Click on 'Full Site'.

I've just looked at it myself. Is the formatting mucked up for anyone else? Looks awful.

[Gab122]

It's not on the bottom of my screen andrew. ??


http://uploads.tapatalk-cdn.com/20161101/4147743a74d90bd04f57317574d85e36.png

[andrew]

Well that's strange. I have no answer for that so I've turned off the mobile template for the whole site. If you just refresh the page now you should get the full site.

[Gab122]

andrew I can see the poll now!

I figured a lot of people couldn't see the poll if like me they just used tapatalk or their mobile device for the forum!
I wanted more people to vote for Alysia poll! 👍😊

that's why I was trying to access the desktop version.

Gab

[Gab122]

andrew - another thing I noticed in mobile version - there is no "like" button on that view. I have to go into tapatalk to "like" a post. No biggie for me. but thought I'd let you know.

[andrew]

andrew - another thing I noticed in mobile version - there is no "like" button on that view. I have to go into tapatalk to "like" a post. No biggie for me. but thought I'd let you know.

Yep not surprising. The additional software that does that probably isn't compatible with mobiles as it hasn't been updated since forever.

[mater]

What do you mean by long term? I didn't vote, because I wouldn't say that we have gone long term yet. My daughter(16) has had 2 rounds, 6 months apart and the plan is for 1 or 2 more years of every 6 months (2 infusions 2 weeks apart). The doctor hasn't used the term remission, but has said that there is no sign of active disease. All labs are normal (except some indicative of the initial kidney damage). Her B cells have been at zero since after the first round.

[Alysia]

Thank you Gab & Andrew for making the site more friendly. We do need more friends voting. Anyone who can, please vote. (It looks to me easier then to vote in the US... oops I hope its not talking politics... )

[Alysia]

What do you mean by long term? I didn't vote, because I wouldn't say that we have gone long term yet. My daughter(16) has had 2 rounds, 6 months apart and the plan is for 1 or 2 more years of every 6 months (2 infusions 2 weeks apart). The doctor hasn't used the term remission, but has said that there is no sign of active disease. All labs are normal (except some indicative of the initial kidney damage). Her B cells have been at zero since after the first round.

Very good question mater. I should have think about it in advance... sorry I didnt.
I think that we can count long term after 3 treatments ? Starting from the third ? What do you think, my friends ? I though that the second sometimes just "push" the first.. please write what you think and I will then edit the first post accordingly.
Thank you for being here ♡

[Alysia]

Its a day to vote, isnt it ?
Anyone around who can, and didnt vote yet, please do.

[Alysia]

Refreshing the thread... anyone who can vote and didnt vote yet, please do. Thanks ♡

[JeanMarie]

Just saw this today.
2 Treatments, the last 2 years ago.
It works, in remission since the last treatment, currently no other drugs not even pred!

Hope everyone who celebrates it had a Happy Thanksgiving!

[whatthewhat]

Thank you, A, for making this poll. Another question about Rtx is if the treatment of it suppresses more than necessary, when done every six months. And truly, I am a huge fan of Rituxan, it's just the protocols are so varied. Our daughter's last dose (a year ago) was only one infusion, not a set of two or four. It has worked very well, however!

[Alysia]

Thank you all for voting.
So far, all the way, it keeps same rating of about 40% saying that rtx keeps its efficiency and 60% not sure.
Please continue to vote. Also no members can vote.

Wtw, Thanks for your comment about too much immune suppresed. Something to think about and maybe an issue for a whole thread....

Thanks JeanMarie. I missed you around.

[Bing505z]

Just saw this today.
2 Treatments, the last 2 years ago.
It works, in remission since the last treatment, currently no other drugs not even pred!

Hope everyone who celebrates it had a Happy Thanksgiving!

Also in remission since treatment (2014) and currently on no other drugs...not even pred!!!

[loisann11]

I have been getting rtx every 6 months since April 2013. So far it does the job of killing my immune system which is what it is suppose to do. No side effects for me from it and it takes about 5 hours as an infusion 1 time. They call it remission. I am confused most of the time since I still feel like crap. I have aches and pains, right now I have an ear infection. I never know what is going on. If this is just the way it is or is something really wrong. Anyone out there know?? Does this thing still make you feel like crap even if you are in remission?? I can't seem to find anyone with an answer to that.... Thanks

[Alysia]

I have been getting rtx every 6 months since April 2013. So far it does the job of killing my immune system which is what it is suppose to do. No side effects for me from it and it takes about 5 hours as an infusion 1 time. They call it remission. I am confused most of the time since I still feel like crap. I have aches and pains, right now I have an ear infection. I never know what is going on. If this is just the way it is or is something really wrong. Anyone out there know?? Does this thing still make you feel like crap even if you are in remission?? I can't seem to find anyone with an answer to that.... Thanks

Good question. Can you please start a new thread with it ? I think many of us can relate.

[jmq]

Alyssa,

I share your experience and concerns. just finished my 2nd infusion of RTX as well. No difference in symptoms yet. On 60mg of prednisone daily which barely controls my connective tissue / nerve issues in my legs, arms, hands and face. I've tried to go down to 40 mg daily but I start feeling really bad when I do. Staying on 60mg and trying not to go up from there but I am barely making it. I take 20 mg in the AM, 20 at mid day and 20 with dinner to spread it out a little bit.

By the time 5pm comes around and that prednisone drug level in my body starts going down, I start feeling pretty bad with nerve pain, extremity pain, numbness in my face, eye, etc. Once I take my next dose of prednisone, symptoms improve a little bit and I get through the night and then we start all over again in the morning. I can barely focus and work during the day which makes me think I should really be on higher doses of prednisone. Not sure how long I will able to get away with staying on 60mg. I feel my body is already getting used to it and it's not being as effective.

Getting really bad heart palpitations, high pulse rate all the time. When i left the infusion center last time, my blood pressure was pretty high. Is that the prednisone? Even had a dizzy spell and I think what it was an episode of arrhythmia / extra heart beat. This made me bit and broke my lip really bad, also felt backwards on the floor.

I'm going to try to go to Dr. today to have my fat lip taken a look at since it might look infected and my immune system is compromised. Maybe they can check my blood pressure as well. Not sure if they can give me something to counteract / regulate that.

Will share what I find out.
Jeannette

[jmq]

loisann and alysia,

I share your experience and concerns. just finished my 2nd infusion of RTX as well. No difference in symptoms yet. On 60mg of prednisone daily which barely controls my connective tissue / nerve issues in my legs, arms, hands and face. I've tried to go down to 40 mg daily but I start feeling really bad when I do. Staying on 60mg and trying not to go up from there but I am barely making it. I take 20 mg in the AM, 20 at mid day and 20 with dinner to spread it out a little bit.

By the time 5pm comes around and that prednisone drug level in my body starts going down, I start feeling pretty bad with nerve pain, extremity pain, numbness in my face, eye, etc. Once I take my next dose of prednisone, symptoms improve a little bit and I get through the night and then we start all over again in the morning. I can barely focus and work during the day which makes me think I should really be on higher doses of prednisone. Not sure how long I will able to get away with staying on 60mg. I feel my body is already getting used to it and it's not being as effective.

Getting really bad heart palpitations, high pulse rate all the time. When i left the infusion center last time, my blood pressure was pretty high. Is that the prednisone? Even had a dizzy spell and I think what it was an episode of arrhythmia / extra heart beat. This made me bit and broke my lip really bad, also felt backwards on the floor.

I'm going to try to go to Dr. today to have my fat lip taken a look at since it might look infected and my immune system is compromised. Maybe they can check my blood pressure as well. Not sure if they can give me something to counteract / regulate that.

Will share what I find out.
Jeannette