1000mg or 2000mg rtx ?

[Alysia]

Hi,
Since 2013 I got 2000mg rtx at every round (2 weeks between) every 6 months. We once tried 1000mg which didn't hold and 2 months later I got the second 1000mg.

The last round my wg dr. and I have decided to try again only 1000mg because of the declinning Igg.
I got 1000mg on May 1. In the last weeks I have joints pains getting worse especially during the night, starting in the evenings. Also very tired and feeling nausea. I will see my GP today to ask for labs. I will set an appointment with my wg dr also.

The 1000mg rtx was suppossed to hold longer. Now it's almost 4 months after it. Not sure when should I get another round of rtx and if it should be 1000mg only (because of the short time since last IV) or 2000mg to hold the wg ?

Thank you for being here and God bless you.

[Masha]

Alysia, I googled Iig, and with all the information out there I am just as baffled as before I looked.
Wish I had more knowledge on this subject. What do you think would happen if you went back to 2000 mg? What does your doctor say?
You know I will keep praying for you.
Masha

[drz]

There seems to be different schools of thought on RTX dosage. No research results to help clarify the issue. Is it better to have smaller dosages more often or large dosages at longer periods of time?

Some doctors believe that the longer RTX is used, it tends to become less effective but there is no research yet to help answer this question? Or any research yet to address what the long term effects of RTX may be but it seems clear it is today the best treatment available for GPA if one is able to survive til the benefits kick in.

[me2]

I am in a similar position. Probably due to being one of the early users of Rituxan here in the US. This is going to be a problem for long term users. I am no longer able to take Rituxan because my Igg is too low. Mr risk for infection is very high. In fact I have suffered from a number of infections , including Pneumonia.

I think you are in a position of trying to take the lowest dose that can be effective so as to not take too much and lose your ability to take it at all - like I have.

I'm not sure what the options will be going forward. If I learn anything more through my own situation I will post it here.


I was also an early user of Cytoxan- way back when. It had only been started to be used for WG about five years prior to me starting on it. In those early days , Cytoxan was given in much higher doses for a longer period of time. I think the risk of using too much out weighed the danger of not treating WG aggressivly enough. I suspect the same is true for Rituxan.
I won't be surprised at all if treatment changes to smaller doses that are spaced out more. Perhaps there will be other medications that make this possible.
There could even be an entirely NEW drug developed that would replace Rituxan.
I remember how surprised I was when I first got news of Rituxan. I couldn't believe a new and better solution than Cytoxan had been found- but it was.
I'm sure there are MORE surprised down the road. Good ones.

[Jaha]

I am sorry to hear that RTX is not as effective as it should be on you. It seems like a lot of a dosage for a person of your size. I am also having problems with my IgG going low and getting infections. It also takes a long time for rtx to kick in and doesn't seem to hold me at 1000 mgs for six months. I think we started our RTX tx's around the same year or close to it, I!m at nine years.
I pray that you get the proper combination of treatments to make your quality of life much better, dear friend. Please take care of yourself!

[John S]

I'm heading to Cleveland. I'll see Dr VillaForte and get some RTX tomorrow. Now I'm full of fear that it may lose it's effectiveness. I am enjoying life immensely since I started on it. It's a whole new life. I don't want it to be like "Flowers For Algernon".

[Alysia]

Thank you so much for your comments, my friends.

But - wait a minute - I was misunderstood: rtx is still effective for me ! I never said that it's efficiency for me is less. No way. Actually the 2000mg which I was on since 2013 was so effictive that we tried to go for the 1000mg.

So, dont worry, John S. Also my wg dr. Has lots of experience with rtx and he said that it doesnt lose its efficiency.

What I did say is that I am not sure that the 1000mg are enough for me. My wg is stubborn although mild. Some of us need higher or lower dozes of meds to work properly. Each one is different. For example sometimes only 30mg pred or more will work for me. At others 10mg pred will be enough.

This round of rtx which is only 1000mg feels like its not enough although again, my symptoms are mild. I had my labs. Creatinine is ok. Thank God. Also CRP. C-anca and Pr3 came back negative. They are indicators for flare in my case. So it seems that I am not in a flare. Although there is some wg activity, "smoldering". My joints are aching hard especially during the nights. I elavated my pred to 10mg for few days. It helps although not all the way. Actually while I type now I need to rest my hand every couple of minutes.

I want to try to hold myself with the 1000mg only.

Maybe there is also kind of "taper" reaction with rtx like there is with pred ?

[Alysia]

Alysia, I googled Iig, and with all the information out there I am just as baffled as before I looked.
Wish I had more knowledge on this subject. What do you think would happen if you went back to 2000 mg? What does your doctor say?
You know I will keep praying for you.
Masha

Masha, please check this link

https://kidshealth.org/en/parents/test-immunoglobulins.html

Immunoglobulins reflect the ability of the immune system to fight infections. IgG is the one my dr. Follows. When we are on a long term of immune suppresed meds the IgG will go down in time. We need to check it in our blood tests (I check it 2-3 times a year) to make sure its above the normal.

If it goes under the normal and we become sick it will be harder to recover. I know few weggies that need to get an infusion of Ivig which is a product made from blood donations and it contains what needed to help the immune system to fight. So dont worry.

We need to find the right balanace between, on the one hand - holding tight the wg, and on the other hand - not suppresing the imuune system too much. Finding the right balance is an ongoing challenge for us.

[Alysia]

I am in a similar position. Probably due to being one of the early users of Rituxan here in the US. This is going to be a problem for long term users. I am no longer able to take Rituxan because my Igg is too low. Mr risk for infection is very high. In fact I have suffered from a number of infections , including Pneumonia.

I think you are in a position of trying to take the lowest dose that can be effective so as to not take too much and lose your ability to take it at all - like I have.

I'm not sure what the options will be going forward. If I learn anything more through my own situation I will post it here.


I was also an early user of Cytoxan- way back when. It had only been started to be used for WG about five years prior to me starting on it. In those early days , Cytoxan was given in much higher doses for a longer period of time. I think the risk of using too much out weighed the danger of not treating WG aggressivly enough. I suspect the same is true for Rituxan.
I won't be surprised at all if treatment changes to smaller doses that are spaced out more. Perhaps there will be other medications that make this possible.
There could even be an entirely NEW drug developed that would replace Rituxan.
I remember how surprised I was when I first got news of Rituxan. I couldn't believe a new and better solution than Cytoxan had been found- but it was.
I'm sure there are MORE surprised down the road. Good ones.

Did you try Ivig ?

[Alysia]

I am sorry to hear that RTX is not as effective as it should be on you. It seems like a lot of a dosage for a person of your size. I am also having problems with my IgG going low and getting infections. It also takes a long time for rtx to kick in and doesn't seem to hold me at 1000 mgs for six months. I think we started our RTX tx's around the same year or close to it, I!m at nine years.
I pray that you get the proper combination of treatments to make your quality of life much better, dear friend. Please take care of yourself!

Thank you for your kindness. Maybe 1000mg is just not enough for you, like it seems to be in my case ?

[John S]

I got a 1000mg infusion today. Dr VillaForte told me that in six months, she might reduce it further to 500mg. I had a 1000 infusion six months ago and prior to that, I was getting twin infusions (1000 two weeks apart).
I feel better than I felt I years. I’m working two-three days a week, serving on civic committees, flying model airplanes, driving rc trucks and playing music regularly.

[me2]

I did try Ivig many years ago before there was Rituxan. It helped. It is something that I may be doing again but there is no plan for that yet.

[Masha]

Alysia,
Thank you for the clear explanation. Wegs is so confusing. My Duke doctor runs a boatload of tests on me. Probably, if I went back and looked I’d find it. Sometimes I just have burn out.
Right now I am having a lot of leg pain. It’s not so bad that I can’t walk, just feels aching and burning. I will be seeing the doc shortly, and it is time for my infusions.
Oddly, I am not having sinus mucus, but on very hot sunny days I am getting sinus headaches.
i know a lady who has advanced MS and hot days are her worst. When I think of her I feel really blessed, she falls frequently and needs a walker. She is considerably younger than I. Her prognosis is bad, next it will be wheel chair, then loss of speech. I blame it all on Adam and Eve— they had to eat that darn apple!
Masha

[Mattieus]

Alysia,

My treatment was originally 2x 1000mg doses with them being one week apart. My last two infusions have been 4x 1000mg infusions one week apart. I am also a 6'6" tall guy and about 300lbs. That tends to hold me well, but once we get within about a month of my next infusion I feel the symptoms creeping back in.

[tac]

I am scheduled for my 2nd Rtx infusion. It has been almost 6 months. I am really starting to not feel well, my eyes hurt, tired, joint pain, headaches, etc. It takes a while for RTX to kick in for me so I feel like I have only really had 1 solid month of feeling good (July) I am scheduled for once per week for 4 weeks, same as the last time. I am on 12.5 pred. My labs seem good except igg low, mcv low, but I feel like the labs should be worse! I am wondering if I should also be on a immune suppressor... My Dr is sending me to Allergy to see about IV for low IGG after the RTX.
I am glad you made this post because I was just wondering what other people were doing. Keep us posted.

[Alysia]

Alysia,

My treatment was originally 2x 1000mg doses with them being one week apart. My last two infusions have been 4x 1000mg infusions one week apart. I am also a 6'6" tall guy and about 300lbs. That tends to hold me well, but once we get within about a month of my next infusion I feel the symptoms creeping back in.

I used to get the symptoms coming back also about a month before the next infusion. That was when I was on 2000mg. Now on the 1000mg the symptoms have started much earlier. I had only 2 and half quiet months or so this time. Some weggies get their infusion every 4 months but I dont know what dose do they get.

[Alysia]

I am scheduled for my 2nd Rtx infusion. It has been almost 6 months. I am really starting to not feel well, my eyes hurt, tired, joint pain, headaches, etc. It takes a while for RTX to kick in for me so I feel like I have only really had 1 solid month of feeling good (July) I am scheduled for once per week for 4 weeks, same as the last time. I am on 12.5 pred. My labs seem good except igg low, mcv low, but I feel like the labs should be worse! I am wondering if I should also be on a immune suppressor... My Dr is sending me to Allergy to see about IV for low IGG after the RTX.
I am glad you made this post because I was just wondering what other people were doing. Keep us posted.

Thanks for sharing. I guess you will get rtx 500mg × 4 times ?

Many times the labs don't reflect how much the wg is active. Only in 2 flares I had a dramatic labs' results. Wg can also be smoldering and causing a damage while the labs looks ok.

Please update us how it goes with rtx and then with the Ivig.

[tac]

Thank you. My doctor told me I need to manage my symptoms better (which is probably true but not the answer) She says to wait it out until next week when I get the RTX and prednisone IV and see what happens... She also is suggesting to wait until after the RTX to start on Immurin. My concern is that it took about 2 months last time for RTX to kick in and I know the pills take about 6 weeks. I think she wants to see what is working and what maybe isnt...