Rituxan-- I did not know that

[me2]

I am in my Medical Center right now getting a Rituxan infusion. Unfortunately I flared two weeks ago right before my scheduled tune up at 6 months.
I thought I would get stuck for weeks on a higher dose of prednisone waiting for the Rituxan to start working. I was told by the doctor
that because I had taken Rituxan before that this treatment would work faster than in the beginning. I was surprised and of course pleased
to hear this.

I will see my regular Rheumy in two weeks (he is out of town right now) and we will discuss making my interval 5 months instead of 6.
I thought ya'll might find this interesting too.

[MikeG-2012]

Thanks for the post! I'm seeing my rheumy next week, and we are supposed to talk about a 6 month follow up infusion of Rituxan. My 4 original doses were back in November.

[annekat]

Hey, Kirk, I'm very sorry about your flare. Sounds like it came on rather suddenly. The one flare I had seemed to come on over a period of several weeks or more, so that I wasn't sure whether to think I might be flaring or not.

Anyway, since you are mentioning RTX, I'm wondering, did you have to go buy it yourself at a pharmacy and then somehow keep it to the correct coldness in your fridge and then in the car, all the way from Olympia/Shelton to Seattle? Or did you buy it in Seattle, or what? There was a thread on this recently, which is why I'm asking. It just seems so primitive and weird to me that people have had to do it this way with such an important and expensive drug. What if you didn't have the money to pay for it up front? Sheesh, I would have thought that a hospital giving an infusion of a big deal drug like RTX would already have it on hand or be able to have it delivered to them in a safe and professional way. Perhaps you will be answering this in the other thread, but I just had to ask. Of course, answer only when you feel up to it.

I hope you are able to be home now, or soon, and will get the best possible recovery from this flare, and no more flares!

[me2]

Thanks for the replies guys. I forgot to ask if any of you had heard this information from your doctors about Rituxan being effective quicker with repeated use. Oh well, I was in a pretty sorry state and then jacked up on prednisone and solumedrol.

Since I am still high on solumedrol I will jibber jabber here.

Anne, I saw the mention here too of someone buying it and having it at home. I found that very surprising too and assumed it was because it was maybe in a different country or perhaps supplied directly from the manufacturer. I was on Enbrel for a year many years ago and it was super expensive and my insurance wouldn't cover it. So I qualified with the manufacturer to receive it for free. They sent it in a styrofoam box by courier to my house and I kept it in the refridgerator.

Later, studies proved that Enbrel had zero effectiveness against Wegener's. Good bye $17,000 dollars of my own money and injecting myself for just over a year. Oh well, its part of being an old Wegener patient that I've had these interesting experiences.

So, the answer is no , I have not heard of anyone here doing Rituxan at home. It is very surprising to me for several reasons. Number one is the expense. One bag like I received today costs something like $9,000 . The Medical Center Pharmacy won't even mix it up and have it ready until I am there because they don't want a no-show to cause them to loose big money on even one bag of the stuff.

The other reason I am surprised is that I know they are very concerned about reactions to the Rituxan. They do it at an extremely slow rate and also give me tylenol, benydry, and a horse dose of Solumedrol (which is simular to prednisone) to prevent a reaction. I'm told the reaction can be quite dangerous. They never seemed that concerned when I was getting Cytoxan infusions or IVIG.

Plus they use a very fancy pump to administer the stuff. They ramp up the dose every half hour to see how I am tolerating it , and also check my vital signs a lot to be on top of a possible reaction. If someone has a reaction they stop the infusion and if you feel better they will try again at an even slower rate. I take it at the fastest rate- 5 hours. Other places may do it different I don't know.

Plus , if I did have a reaction I'm at a hospital already and they could help me out immediately.

Now, I did hear the nurse talking the guy next to me about her hearing that insurance companies were going to have people do more types of infusions at home. She said she could be out of a job and maybe have to work for Walgreen's drug store. I don't know how much of that comment was a joke or not but I know she was not joking about the possibility of people doing more types of infusion at home. It just would surprise me that people would do Rituxan at home. I'd like to hear more of the details from someone doing that if they have the time and inclination- or are jacked up on steroids like me tonight.

I am home- thank you Anne. I am feeling MUCH better. I have high hopes that I can successfully reduce prednisone quickly in the next couple of weeks as this doctor seemed to think. It was not my regular doctor but she did seem very knowlegeable and competent about Wegener's. I felt lucky to get to see someone so good at just the drop of hat. Most of the time in the past years it has been a nightmare for me to find a competent doctor on short notice when I was really sick.

Yes, the flare did happen rather quickly. It responded early on to increased dose of prednisone over a few days. So , I started to reduce the prednisone in part because I knew I had this Rituxan infusion coming up and partly because I was feeling better. That was a bad idea. It came back and came back hard and fast. Over the course of three days I kept increasing my prednisone chasing the symptoms and kept going down hill.
Yesterday I took 80 mg of prednisone before I finally found some relief. I have to admit it was pretty scary and I suffered some terrible symptoms. WG affected my central nervous system many years ago and these past few days it was acting up again. I can't describe how that feels except to say - ITS REALLY, REALLY BAD. ha

I won't list all of my symptoms unless someone wants to hear more about my adventure.

So Mike, I'm glad to hear you are in line for a treatment. I was one of the first people I know to use Rituxan years ago. I'm a little surprised to hear you are getting 4 infusions. When I got my very first infusion Rituxan was quite new to being used in the US for WG and I had a small arguement with the doc I had at the time. He wanted to do two infusions - I think spaced two weeks apart. (Don't quote me on that , it was a long time ago and I was very sick)

I pushed to get four infusions because I knew this was the protocol used in England (I had been in contact with one of the doctors by email who was on the original team that developed Rituxan. Ironically, I was doing it on behalf of a friend with WG. I didn't know I would end up needing it myself) where the treatment was developed. My doc said that in America the protocol was two infusions.

Now, on my 'maintenance' infusions I only get one every six months. It seems to work although I'm suspecting 6 months might be a tad long for me. The nurse told me she had people do it every 5 months and maybe I should do that.

I will talk more about it with my Rheumy when I see him in two weeks. I should mention that he also said I would be doing the 6 month infusions until I could successfully reduce my prednisone to 10 mg or below- maybe even get off of prednisone. It would be surprising, very surprising if I can ever quit prednisone as I have been on it for over ten years. Still, a guy can hope.

[pberggren1]

Even if you flare you don't have go on oral pred when using RTX. That is the bonus of RTX.

[me2]

Please explain more Phil. If you are using Rituxan and flare what do you do? Repeat the Rituxan right away? Is it because it works faster like this doctor was suggesting?

[annekat]

Wow, Kirk, you really must be flying high on those drugs to ramble that long! Not that it isn't interesting, and I'm going to go back and finish reading it. But I wanted to clear one thing up. I don't think anyone has mentioned any possibility of dosing themselves with RTX at home. Alysia was just saying that she had to buy the drug, keep it in her fridge overnight, or until it was time for the infusion, and then take it to the hospital herself in a cold pack, where she would get the infusion probably in a very similar way to how you get it.

After that, Phil mentioned keeping RTX in his fridge for long periods of time. Maybe he can clarify why he ended up doing that, if he is so inclined. I've always gotten the feeling that Phil, too, goes to a hospital to get his infusions.

As for the Enbrel, that is interesting. When I was first dx'ed, a relative was trying to help me figure things out and asked one of his docs about Wegs/vasculitis, places to get specialist treatment in the Portland, OR area, etc., and this doc mentioned (who obviously knew little) mentioned Enbrel as a treatment. I then looked it up and saw that it had been tried and found not to be effective. But I never would have guessed it was so expensive! What a bummer that you had to not only pay all that for nothing but inject yourself with it, too.

Ok, I'll finish reading your post now.....

[pberggren1]

Yes, even if you just used RTX 6 months ago as maintenance and are flaring now, you will prob just need 1 or 2 doses. And you don't have to go on oral pred. When you get the RTX then the doc will prob order 500mg or more of methlyprednisolone. That will be enough steroids to help treat the flare.

I have kept some RTX in my fridge for over a year.

[annekat]

I have kept some RTX in my fridge for over a year. Phil, can you tell me WHY you had the RTX in your fridge for a year, or at all? Do they not prepare it at your hospital before the infusion like they do at Kirk's? Did you have to buy it ahead of time and then take it in when you were ready to use it? Inquiring minds want to know. If you don't mind a little explaining.

[me2]

Oh, I did misunderstand about taking the Rituxan at home. Ah well, I am not at my best. Sick and hyped up on drugs.
I too don't know why you would have such an expensive drug at home. Of course Phil is Canadian and their system must operate different than ours.
Boy, wouldn't it be nice to raid Phil's fridge? Hey Phil buddy, how about I come over?

I stored the Enbrel in the fridge and mixed it up right before using it. Yes I paid for it, injected myself with it and the absolute worst part of it was that it was doing zero to help me. I spent lots of extra time on high dose prednisone because of that.

The miracle is that I just had a Dexascan done and it showed that my bone density was within the normal range. I have been on steroids longer than any patient my Rhuemy has. He is amazed that I do not have more bone loss. He said that I must have had really great bones and would probably be at the top end of normal on the scale without the steroids. He also said that I could probably improve my density with weight bearing exercise. I wonder if hauling around extra weight gained while on prednisone counts?

[pberggren1]

My doc writes a script for the RTX and I get it from my pharmacy. He also wrote extra so I have some on hand so that I can use it when needed like in an emergency when I flare. It does not take long to get it approved for me though. Maybe a few days. I just take with me to the hospital and the pharmacist there mixes it for me.

[annekat]

Thanks Phil, for the explanation. So, it needs to be kept cold even before mixed, I guess. Maybe Alysia's is the same and she takes it to the hospital where they mix it and then administer it.

[Alysia]

Hi Kirk,
I am sorry that you are flaring :sad: but glad the you can get earlier the rtx and that it helps you… I remember reading here about others that are getting it in less then 6 months but thanks for the info… :thumbup:
I didn’t hear about the rtx being more fast after first administration, but it makes sense….
1000mg here costs about 4500$. I am the one who need to buy it (it costs me 200$) and bring it to the hospital (Thanks Anne, you are so kind). I buy it at a pharmacy of my health service. (kind of an insurance). The hospital belong to the gov. this is how it works here.
I don’t do it at home. No way. Too dangerous. They are giving it here like you described it. There is prob a protocol of administration. the nurse is making the "mix" of it.
First time I got 2 IV each 1000mg. second time, maintenance 2 IV each 500mg. my next one will be 1 IV of 1000mg. (Thanks Phil for the advice).
I am getting it every 6 months. I am not flaring but always a bit smoldering. the more the 6 months is passing the more I feel my smoldering…. I am having mine on 16 April and feeling that I need it already, having night sweats, more coughing, more joints and ears aching, more nose stuff (it even bleeds a bit couple days ago) and my eyes are red again. My body is kind of "crying" to get the rtx again soon…. :crying:
Have fast and easy recovery. please update us how are you. Take care. :hug1:

[me2]

Thanks Alysia,
I know I have talked to my doctor about how the protocol has evolved through use since way back when I started. I know with a new treatment on a rare illness they are just not going to have every thing figured out before they start using it . I was the beficiary and the guinea pig since way back at my beginning of this disease. When I came down with WG at the age of 19 they had only developed the first treatment for it just 5 years before. Cyclophosphamide (this was also the beggining of me using big words)

I know for our illness they tend to err on the side of caution -which means the first protocol will likely be much more harsh than later ones. The disease is more dangerous than the treatment.

So, I ended up doing Cytoxan for two years- daily. I was doing it long after I felt better. I had to quit because of bleeding from my bladder caused by the Cytoxan. The good news is it worked and I had a drug free remission for the next twenty years.
Now, they would not dream of giving that much Cytoxan to someone who was in remission. Of course there are also other treatments available now too that can be switched to. So, the news has gotten nothing but better for us weggies.

My point was that I'm not too surprised there are different protocols still in play in different places as Rituxan is not still completely figured out yet.

My maintenance is one IV of 1000 mg like you are getting.

Looking at the difference in price I wish it was done the same way here as it is for you and simular to Phil. Our system is really messed up. But , it has kept me around for this long.

First update (ha) I had a hard time sleeping thanks mostly to the solumedrol I'm sure. I feel ok this morning but I expect fatigue to hit by sometime tomorrow. Thats ok. That is much better than the flare I was experiencing. It will mean the Rituxan is doing its work.

I experienced very simular symptoms as you leading up to the flare and then my Rituxan. I wonder if the docs are a bit off for most of us with this 6 month idea? Why not every 5 months? For me, I would select quality of life over the possible dangers of increasing the Rituxan by that much.

I hope you do ok the next couple weeks as you wait for your 'R' day Alysia. Or that you can get the date moved up if your symptoms really start to escalate. Here, scheduling the infusion clinic only takes three or four days. If you already have the Rituxan can you move the date up yourself if you feel you need to? It sounds like Phil gets to do this.
Thanks for the hug. They don't give me one at the infusion clinic.

[Alysia]

Hi Kirk,
wow. what a history ! you have being through so much. thanks God for your 20 years of remission. it gives me hope and inspiration to know about your long history with wg. thanks for sharing :thumbup:
the hard time to sleep is prob because of the IV-pred. but the fatigue will come soon. I dont know if it is better or worse :unsure:
it is not easy to schedule a time for the IV here. they have only 2 machines for IV with the pump and the hospital is crowded too much. I scheduled it after a holiday in a day that I know that will be less crowded... only 15 days to wait...
"R"-day is nice. I am going to "adopt" it.
and as for the hug: time for big one:

http://p.twimg.com/AvWyHveCEAAsMDC.jpg:large

[pberggren1]

I always discuss with my doctor what is the best timing for the RTX infusions.