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Pete
08-01-2019, 09:29 AM
Competition for rtx...

https://ancavasculitisnews.com/2019/07/30/ruxience-biosimilar-rituxan-approved-by-fda-2-anca-vasculitis-subtypes/?fbclid=IwAR119Wr9GMCDhJSSk8tvyWFbagIBIiRO7IujZKiR iqWBcUAbXNtkU_Nb6T8

annekat
08-01-2019, 10:44 AM
I wonder what the cost will be, compared to that of Rituxin.


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shankxonline
02-26-2021, 01:38 PM
Hey All - I have been recommended to take this - Ruxience - instead of Rituxan. Anyone has had experience with it to share? Any indication of dosage that you have heard/experienced?

Tahoerich
02-27-2021, 11:53 AM
Good news. I just hope the cost are much lower. In June of 2020 I got the 4 week infusion for Rituxan. The cost that the infusion center charged 54,000 for each week(the Rituxan and cost to get infusion). In December of 2020 I had a 6month buster. The cost for just one week infusion was 62,000. I was lucky last year I already went past my yearly out of the pocket expenses. I’m still on my company’s insurance (cobra). I pry that the cost for this new drug is much lower. Be safe all.

me2
03-01-2021, 11:03 AM
My insurance refused Rituxan coverage recently because I was getting it sooner than 6 months. The maker of Rituxan , Genentech, was very fast and very helpful in supplying it for free for me. I just got the infusion a few days ago. Not only did I get approval but the approval lasts for the next year. I already have my next Rituxan appointment scheduled and they will supply it.
They supplied for me many years ago too - before Rituxan was approved for WG and I remembered from that time how helpful they were.

shankxonline
03-02-2021, 05:07 PM
My insurance refused Rituxan coverage recently because I was getting it sooner than 6 months. The maker of Rituxan , Genentech, was very fast and very helpful in supplying it for free for me. I just got the infusion a few days ago. Not only did I get approval but the approval lasts for the next year. I already have my next Rituxan appointment scheduled and they will supply it.
They supplied for me many years ago too - before Rituxan was approved for WG and I remembered from that time how helpful they were.

Ah - didn't know thats an option. For now - going with Ruxience for tomorrow.

me2
03-02-2021, 05:12 PM
Take some reading material or computer or something to keep you busy as it takes several hours. You maybe know that. Some food is good too if they don't have some there.
Sometimes I even fall asleep for a while after the benedryl pill takes effect. I actually look forward to the infusions now that it is old hat.

shankxonline
03-03-2021, 01:17 PM
Took frist Ruxience infusion (800mg) today and went un-eventul during the process. Now waiting and watching... but so far, so good.

Pre-med given: Solumedrol, Benadryl, Tylenol.
Infusion rate: 25 -> 400, took 4.5 hours total
post: prednisone continuation at 60mg

me2
03-03-2021, 02:19 PM
That's great it went well for you. I don't know what the official idea is for when it starts to work but I can say that my OWN experience is that it takes a full month to have effect. For me , nothing happens- in fact I might still be getting worse WG symptoms in the next several weeks. Then, almost to the day, a month later I start to feel better.
One reason I'm aware of this is that time and time again I would think "Oh, I had the infusion 3 weeks ago I SHOULD be feeling better any day now" and then nothing would happen. I just have to wait the month for results.
I'd like to hear if others have a similar experience - I don't know.
So hang in there. You've done the important part and the rest should be smooth sailing.

jmq
03-04-2021, 10:49 AM
Me too. My insurance (BCBS) did not approve Rituxan/Rituximab for my infusion. Instead they are making me take Ruxience biosimilar.
I would be interested in any feedback on this drug.
I'm disappointed because Rituximab was effective for me 4 years ago and I don't know anything about this new drug.
Is it the same?

jmq
03-04-2021, 10:56 AM
That's good to know. My insurance only approved the Ruxience this time around. It must be cheaper. If it's just as effective, I don't really care but I don't want to wait and find out it doesn't work. I would prefer to go the proven-way.

How did you get the Genetech to give you Rituxan for free and how long did it take? I know they have the copay card but I think one of the requirements is you need to have commercial insurance but if your commercial insurance doesn't approve it then it's like you don't have it, right?
I suppose I could call Genetech tomorrow and inquire if they will cover the cost if my insurance doesn't.

me2
03-04-2021, 03:44 PM
Just Google Rituxan patient assistance. It is their reimbersment program. My clinic uses Rituxan that they already have in supply for me and then Genentech sends them a replacement.
For me it only took a couple of days to hear back from Genentech letting me know I was approved - after they recieved paper work from me and also from my doctor.
The paper work was surprisingly minimal and easy. I don't know what all their guidelines are but I'm sure they can answer all of your questions on the phone. I think what you described is correct.
The phone people I had were very knowledgable and helpful.

jmq
03-05-2021, 01:10 AM
That's great it went well for you. I don't know what the official idea is for when it starts to work but I can say that my OWN experience is that it takes a full month to have effect. For me , nothing happens- in fact I might still be getting worse WG symptoms in the next several weeks. Then, almost to the day, a month later I start to feel better.
One reason I'm aware of this is that time and time again I would think "Oh, I had the infusion 3 weeks ago I SHOULD be feeling better any day now" and then nothing would happen. I just have to wait the month for results.
I'd like to hear if others have a similar experience - I don't know.
So hang in there. You've done the important part and the rest should be smooth sailing.

My experience was similar, it took about about 6 weeks to kick in for me . Be patient. It's going to work. But you need to set your expectations right.
It took 6-8 weeks for me but I was very sick at the time though. Not sure if that has anything to do with how quickly it works.

me2
03-05-2021, 01:22 AM
Thanks. It helps to know what your experience its. It was hard for me to learn the patience. I had been through Cytoxan so many times I kind of had that expectation it would work soon - which Cytoxan DOES and Rituxan does not.
Not that I'm complaining. Rituxan is so much better in the long run. Once I get the infusion I just kind of hunker down and take care best I can waiting for it to take effect and not expecting ANYTHING good to happen for quite a while. Part of the problem for ME was that the doctor never really explained that. I had to learn it the hard way.

I'm sure that being really sick like you were doesn't help with the experience. I know I've felt the WG actually get worse after the infusion which can be super discouraging if expectations are not set right. Now, I don't worry about it all. I just determine to get through whatever I have to and it WILL kick in.

cbaker0812
03-05-2021, 09:59 AM
I would like to understand this as well. I had 4 RTX infusions at the end of the year and was able to get off the prednisone completely following that. The Methotrexate made my hair fall out and I was extremely tired and just didn't feel great for 2-3 days after taking it each week, so they have stopped that as well. I am being told that I most likely can just do 1 (possibly 4) round of RTX at the 6 month mark for maintenance depending on how my number are holding. I am grateful to be off so many medications and not taking pills except for vitamins, but the expense of the RTX is high and if there is something as effective for less cost, I would love to understand more about it.

jmq
03-05-2021, 12:09 PM
Thanks. It helps to know what your experience its. It was hard for me to learn the patience. I had been through Cytoxan so many times I kind of had that expectation it would work soon - which Cytoxan DOES and Rituxan does not.
Not that I'm complaining. Rituxan is so much better in the long run. Once I get the infusion I just kind of hunker down and take care best I can waiting for it to take effect and not expecting ANYTHING good to happen for quite a while. Part of the problem for ME was that the doctor never really explained that. I had to learn it the hard way.

I'm sure that being really sick like you were doesn't help with the experience. I know I've felt the WG actually get worse after the infusion which can be super discouraging if expectations are not set right. Now, I don't worry about it all. I just determine to get through whatever I have to and it WILL kick in.

I think the infusions are the best to contain it and for maintenance (twice a year). I was able to get off all medications and was like that for 4 years. I even stopped the maintenance infusions bc my Wegeners was totally quiet. Some people believe you should always do the maintenance infusions 2x year but my doctor said let’s try to skip one and see how it goes. I did fine so I skipped the next and that’s how I stopped them and was in complete remission for a few years. Until I got COVID and now it’s back so I’m starting with the infusions from square 1. They are expensive but, totally worth it. You can usually get the drug manufacturer to help with cost.

me2
03-05-2021, 12:21 PM
Very true. Before Rituxan cam along I was on Cytoxan 40 years ago. After two years I was declared in remission and then was drug free for 20 years. Because there was no internet I had no idea how good I had it. I had the illness for 17 years before I met or even talked to even one person with WG. Drug free remission is certainly possible and I think it's worth a try at some point. Of course, there is some risk involved of relapse. Each case is different.
It has been proven that Staph can cause relapse and to me it makes sense that infection of any kind could be a trigger- even if we can't know for sure. Hopefully you get some more 'good behaviour' under your belt and you can go medication free again.

shankxonline
03-06-2021, 01:34 PM
5 days in after Ruxience infusion and so far, so good. Sugars are through the roof (expected) and need control but no side effects seen. Fingers crossed.
Medical bills - unknown at this time. Will post what shock I get for that :)

shankxonline
03-10-2021, 07:13 PM
Dosage #2 today. 3 hr repeat of Ruxience 800mg. Feeling tired but can't sleep. Palpitations are up - but other vitals good.

me2
03-10-2021, 07:47 PM
The horse dose of steroids given with the Ruxience is keeping you awake- not fun but normal. Once it wears off you should be able to catch up on sleep. It causes me palpitations too and they should also get better soon.
I'm going through something similar myself right now on high dose steroids. Not fun. Better days are ahead though so I try and distract myself with Netflix until they get here.