1000mg or 2000mg rtx ?

**Jaha** · 09-05-2019, 05:08 AM

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** · 09-05-2019, 11:00 PM

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** · 09-07-2019, 03:21 AM

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** · 09-07-2019, 03:45 AM

Originally Posted by 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!

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

**John S** · 09-07-2019, 07:48 AM

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.

**tac** · 09-12-2019, 05:13 PM

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** · 09-16-2019, 03:52 AM

Originally Posted by 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.

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** · 09-16-2019, 10:10 AM

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...