PDA

View Full Version : Rituxan, Round 2



Brooke
03-15-2011, 07:24 AM
Hello,

Just got a call from Mayo about my B-Cells returning. Dr. Keough wants me to do the Rituxan Infusions again. She said she would like me to do the 4 infusions vs 2. I will be starting them in April. She said all of my blood work that I did this month was good and she wants to keep me feeling good and so I think that is the reason for doing the infusions again, even though I am feeling great. She said she doesn't want to wait for me to get sick and then have to go on steroids again. I will see her for follow up this Summer sometime.
Thats all for now :)

Chris G
03-15-2011, 08:11 AM
That sounds like both good news and bad news. Good that they want to be proactive and KEEP you healthy, but, did the rituxan have side effects for you? How long did your first round of rituxan keep you healthy?

Brooke
03-15-2011, 08:32 AM
I did not have any side effects with the Rituxan, I had my first infusions almost a year ago and I am feeling great.

ArlaMo
03-15-2011, 08:55 AM
Interesting. So if we go the Rituxan route, are we looking at infusions once a year or so, even if we (and our lab numbers) are good? This is one question I guess I didn't get an answer to when I was in Cleveland. Are you in medical remission, Brooke? I was kind of hoping not to have to take any meds if the Rituxan works for me.

Brooke
03-15-2011, 09:00 AM
Right now I am only on Symbicort, Bactrim, and my sinus rinses. No Pred right now, I have been off of pred for a few months now, After my first infusions last year, I weaned off of them. I might have to be on a maintenance drug once my B-Cells come back after this next infusion. I hope the Rituxan works for you! So far it has for me!!

elephant
03-15-2011, 11:43 AM
Great news Brooke, so happy to hear that RTX is working and it gives hope for everyone who needs to be on it.

drz
03-15-2011, 12:33 PM
Great news Brooke, so happy to hear that RTX is working and it gives hope for everyone who needs to be on it.

yes, that is great news and you are now someone we all want to emulate, off the prednisone and feeling great!:hug3:

Brooke
03-16-2011, 12:26 AM
Thank you! Yes, so far everything has been great news for me! I still have the "buzzing" in my ears, I don't remember it going away when I was on Pred, so maybe this is just how it will be which is nothing to complain about. Sometimes I still feel pressure and a little pain in my sinuses, I hope the second round of Rituxan will help that. My energy has been great and I can breathe really good with no wheezing so that is awesome.
I hope Rituxan works for everybody that needs it.

Chris G
03-16-2011, 01:43 AM
So happy for you! :rolleyes1: .....and so jealous at the same time!

Sangye
03-16-2011, 03:21 AM
Brooke, that's great. Did Dr Keogh say why she's doing 4 infusions instead of 2? Dr Seo said Mayo was the main one doing 2 and had found it to work just as well. So glad you didn't have any side effects from it.

Sangye
03-16-2011, 03:26 AM
Interesting. So if we go the Rituxan route, are we looking at infusions once a year or so, even if we (and our lab numbers) are good? This is one question I guess I didn't get an answer to when I was in Cleveland. Are you in medical remission, Brooke? I was kind of hoping not to have to take any meds if the Rituxan works for me.
It depends. For my last 2 infusions we waited until my symptoms increased (they appeared before my B cells returned). We delayed treatment as long as possible. Since I have a terrible reaction to the rtx infusions (extreme weakness for 6 wks), this meant losing many months of function due to either Wegs symptoms or rtx reaction. Because of this, Dr Seo decided that we should just do rtx every 6 months no matter what. So I don't need to wait for symptoms to appear or for B cells to return.

I'm not on anything other than 2.5mg pred in between the rtx treatments. I'm hoping to get down to 1mg pred but will probably not be able to get off it completely due to adrenal damage.

Brooke
03-16-2011, 03:36 AM
Sangye- She told me that with studies they have usually been giving Rheumatoid Arthritis patients the 2 infusions vs 4. I think she said it was actually ok to do the 2 but since I am doing the infusions at home and I think I am getting more of the Rituxan by doing the 4 infusions, she recommended the 4. She was calculating some numbers, I think to see how much Rituxan I would be getting on doing the 4 vs 2 infusions. Does this make sense?

aewaustin
03-16-2011, 03:37 AM
Brooke, Great information! So what test shows that your b-cells are returning? What do you monitor?

Brooke
03-16-2011, 03:38 AM
It is a blood test called CD19 or CD20.

Sangye
03-16-2011, 03:44 AM
Sangye- She told me that with studies they have usually been giving Rheumatoid Arthritis patients the 2 infusions vs 4. I think she said it was actually ok to do the 2 but since I am doing the infusions at home and I think I am getting more of the Rituxan by doing the 4 infusions, she recommended the 4. She was calculating some numbers, I think to see how much Rituxan I would be getting on doing the 4 vs 2 infusions. Does this make sense?
They must be giving Wegs patients 2 or Dr Seo wouldn't have switched to that protocol. (They've always done 4 at JHU)

I don't understand the need for calculations-- aren't you getting 50% more rtx with 4 infusions? LOL

How are you doing the infusions at home? Do you have a nurse there?

Brooke
03-16-2011, 03:47 AM
I am not sure about the amount of Rituxan, maybe I should ask her again? I just know she recommended doing the 4.
I should have said at the Hospital in my home town is where I will be doing the infusions, vs going to Mayo to have them.

Sangye
03-16-2011, 04:18 AM
Oh! LOL I was wondering how you were gonna do the infusions safely at home!

Brooke
03-16-2011, 05:01 AM
Yeah, that would be tricky!!

BrianR
03-16-2011, 06:41 AM
Interesting. So if we go the Rituxan route, are we looking at infusions once a year or so, even if we (and our lab numbers) are good? This is one question I guess I didn't get an answer to when I was in Cleveland. Are you in medical remission, Brooke? I was kind of hoping not to have to take any meds if the Rituxan works for me.

I have the same question as ArlaMo and am still not sure I understand. Is it possible for one to receive the RTX infusion(s), and go into remission and then perhaps not need another infusion until a flare? My understanding is this is how it works with the CTX and pred combo and is it not the same for the RTX pred combo? If Brooke is in remission and feeling well and her bloodwork looks good why the infusion again? Would that not be the same as taking someone who got into remission using CTX and pred and saying..."well, you are in remission now for a year but let's put you back on CTX just to make sure you stay there". RTX and CTX are the heavy hitters to get one into remisssion and after that one is either drug free or on maintenance drugs such as methotrexate. I am surprised to hear that one would go back on RTX while still in remission.

Can anyone help me understand this please???

Brooke
03-16-2011, 07:04 AM
I am not sure I know the answer to that but I would certainly think that one could receive Rtx and go into remission and not need another infusion until a flare. But then once you flare, you would probably be put on pred again? I see my Mayo doc this Summer and we will see how I am doing then and I am hoping I can be on a maintenance drug or possibly nothing after my B-cells come back after this next round of infusions. Another thing, I don't think Rtx is as "harsh" on the body as Ctx.

pberggren1
03-16-2011, 09:08 AM
I wish I could give you the professional answer Brian. But like Brooke said the ctx is much harsher than the rtx. Ctx is chemo and has some nasty side effects while rtx is a biologic with far less complications and side effects. Ctx works much more quickly and is by far the heavy hitter. Ctx can kick in within 2 weeks or less and rtx usually takes at least 6 weeks. Usually rtx is used in milder cases of relapse where organ involvement is not there or very minimal, like lungs and kidneys. In my case we had no option but to use the ctx because we needed something that worked quick and was a heavy hitter to get the Wegs knocked down ASAP. Rtx would not have been strong enough and fast enough. With the lung infection I have and other fungals showing up now and then we could not take chances using rtx. Ctx also has many years of data compared to rtx which is a fairly new drug. But with Sangye Dr. Seo said that the rtx will be used regularly. I find that a bit confusing myself. Brian Creeling, on the Forum here, is both on mtx and Imuran at the same time. I asked him on FB why but have not heard back yet. I was talking to my doc today about using rtx in the future but he was so busy today and I only had an hour with him so next time I will ask more about rtx.

pberggren1
03-16-2011, 10:15 AM
Brian Creeling said last year he had a bad flare and was on Aza and his doc put him on mtx on top of that. Didn't really get a clear explanation as to why both at the same time but he said that his doc told him it would be safer than ctx.

drz
03-16-2011, 01:16 PM
I wish I could give you the professional answer Brian. But like Brooke said the ctx is much harsher than the rtx. Ctx is chemo and has some nasty side effects while rtx is a biologic with far less complications and side effects. Ctx works much more quickly and is by far the heavy hitter. Ctx can kick in within 2 weeks or less and rtx usually takes at least 6 weeks. Usually rtx is used in milder cases of relapse where organ involvement is not there or very minimal, like lungs and kidneys. In my case we had no option but to use the ctx because we needed something that worked quick and was a heavy hitter to get the Wegs knocked down ASAP. Rtx would not have been strong enough and fast enough. With the lung infection I have and other fungals showing up now and then we could not take chances using rtx. Ctx also has many years of data compared to rtx which is a fairly new drug. But with Sangye Dr. Seo said that the rtx will be used regularly. I find that a bit confusing myself. Brian Creeling, on the Forum here, is both on mtx and Imuran at the same time. I asked him on FB why but have not heard back yet. I was talking to my doc today about using rtx in the future but he was so busy today and I only had an hour with him so next time I will ask more about rtx.

Thanks for this post. It seems to validate my experience too. They tried RTX IV first on me, but then switched to CTX cause they said the
RTX wasn't working quick enough. My nephrologist said it wasn't working at all, my rheumatologist said it was working but not quick enough. Then they switched to CYTX oral cause they said it would be more effective and easier to regulate for side effects. It also has a longer known track record so that makes prescribers more comfortable using it since RTX has not been used as long.

ArlaMo
03-16-2011, 01:27 PM
This is all very interesting. And a bit sobering. I've been on Ctx for 11 months, no remission. So I'm switching to rtx as soon as I get insurance approval. This was all set in motion because of my trip to Cleveland. I came away from that visit with a very different view of rtx than what drz and pberggren have posted.

Sangye
03-16-2011, 02:25 PM
I think it's all over the map. Some people get rtx and go into a lasting remission. Others get the Wegs under control enough to transition to a maintenance med (and maybe off that eventually). Some need to keep getting rtx to keep the Wegs under control.

I have refractory Wegs-- ie, unresponsive to prior treatments. Rtx is particularly effective at inducing remission for refractory Wegs, and it's done that for me. However, I guess my Wegs dog is so lively that as soon as the rtx wears off the dog wakes up again.

I don't think there is a set format for all Weggies. Dr Seo has never said there was, even with my case. He's always just said we have to see as we go. All of you who are starting rtx should not assume that you'll be on it forever, or any drugs. It's very individual.

Brooke
04-05-2011, 11:20 PM
I will be starting my second round of Rituxan this Thursday, I will be doing the 4 infusions and will be done by the end of April. The first round I had was last year at the end of April when I started, I hope it goes as smooth as that.

Sangye
04-06-2011, 01:05 AM
Good luck, Brooke. I hope it's easy as pie. :thumbsup:

gurinbasra
04-06-2011, 01:15 AM
Just to add my experience to this, I was on Ctx for a year and I didn't respond, took the Rtx once and boom . . . it put me in remission. As mentioned above, it's whatever drug works for you and for however long. I've just had my second Rtx after a year and a half of remission.

RCOSSIO
04-06-2011, 11:53 AM
Arlamo when you say "no remission"...do you mean that you're blood work shows up positive creatine, sed and ANCA? What dosage of Cytoxan are you currently on?

Brooke
04-06-2011, 11:14 PM
Thanks Sangye, I hope so too!

ArlaMo
04-07-2011, 01:20 AM
Arlamo when you say "no remission"...do you mean that you're blood work shows up positive creatine, sed and ANCA? What dosage of Cytoxan are you currently on?

Going this morning for infusion!!

By no remission, according to the docs at CC, my CRP and sed rate are still high and in a category of non medical remission. Positive ANCA. My creatine did come down to pretty normal levels with the ctx, but it bounced back up a couple of weeks ago and then back down. I saw my nephrologist last week and he said it might be from dehydration :biggrin1: I'm drinking over a gallon of water a day, so I think not! But it did come back down within normal levels on my labs last Friday. So who knows?! Also, I continue to have a lot of protein in my urine at a pretty high level.

I've been on ctx for one year this month and have been taking 200mg a day since June. They started me on 150mg, but my creatine kept rising so they upped it. Been on that dosage ever since.

Sangye
04-07-2011, 05:33 AM
ArlaMo, are you truly drinking over a gallon of water a day? That is way too much water for a regular person.

ArlaMo
04-07-2011, 05:48 AM
ArlaMo, are you truly drinking over a gallon of water a day? That is way too much water for a regular person.

I am. That was the recommended amount for my height and weight and taking the ctx. I filled two whole jugs last week for my 24 urine!

I won't be drinking nearly that much now that I'm off the ctx. I'll probably stick with 8-10 glasses a day.

Brooke
04-08-2011, 06:43 AM
Done with my Rituxan Infusion today! Everything went well and I am back at work. Small headache and little tired but doing just fine.

Sangye
04-08-2011, 08:34 AM
That's great, Brooke. :thumbsup:

Man, I can't even picture functioning like that after rtx. Seriously, you wouldn't believe what it does to me.

Brooke
04-08-2011, 09:47 AM
Yeah, that really sucks Sangye. I suppose if you can tough through it for a while, you know you will feel better. Actually after I was at the office for a while, I felt sooo tired and had a headache. Not a bad headache but just enough to annoy me. I am at home now and feel more "awake" but still have that dull annoying headache. I think the benedryl they game me, made me feel groggy... hoping that is all it is.

Brooke
04-08-2011, 09:48 AM
"gave" ....

Sangye
04-08-2011, 12:23 PM
I don't think the 2 infusions worked as well for me as the 4 infusions did. I'm still having a lot of pain and my energy isn't nearly as good as it was last year after the 2nd round of 4 infusions. My lungs feel much better-- it did help that. I feel like this round put me back to just a few months ago, when the Wegs was starting to wake up. I'm gonna email Dr Seo and ask him about it. I'm sure it's too late to do anything about it. I dread doing 4 infusions again because it was so much harder, but I also don't want to have what feels like grumbling Wegs.

pberggren1
04-08-2011, 12:26 PM
Seeing as this is a Rituxan/Rituximab thread I will tell you guys the news:

I saw my doc today and he showed me a just completed study of rtx vs. ctx in inducing remission in Wegs and MPA and it basically showed that rtx was better at inducing remission for a longer time.

So he wants me to try rtx and should start my first of 4 infusions next week. He said he will call tomorrow to let me know more of the details and if it will be covered or not. I am sure it will be covered but with our government who knows for sure. I can then quit the ctx but have to stay at 60mg of pred until infusions are done and then taper off from there.

I am really excited about this and would appreciate any advice possible.

Sangye
04-08-2011, 12:28 PM
I think that's great, Phil. :smile1:

pberggren1
04-08-2011, 12:30 PM
Thanks Sangye. I am a bit overwhelmed right now! I am excited and nervous at the same time.

DEE
04-08-2011, 02:26 PM
Thats good news Phil I hope it all works out for you :thumbsup:

Chris G
04-08-2011, 10:02 PM
Brooke - I'm so glad to hear you're doing well!
Phil - that's good news! And good luck!

delorisdoe
04-08-2011, 10:12 PM
How expensive is it do you know? I know that in canada if you are on a med that is taken oraly it is always at cost to you. If the drug is given at the hospital through an iv it is often covered by ohip...this was true for the ivig treatments i had and they were 10 000 dollars each @ 6 infusions. hopefully this is true for rtx. is it given through an iv?

Brooke
04-08-2011, 11:12 PM
Sangye - don't get too discouraged, it might start kicking in more after a while. You didn't have it that long ago, correct?
Phil - that is great news, it has been great for me, I hope it does with others as well.
Insurance covered my infusions but I still received a statement in the mail last year, I believe it was around $75,000 for the 4 infusions. YYYYIIIIIIKKKKKEEEESSS !!!!!

Sangye
04-09-2011, 01:06 AM
I started the rtx 9 weeks ago. It should be working by now.

Are you sure it was $75K for the rtx? It's usually $10K per infusion, including drug and infusion center expenses.

Brooke
04-09-2011, 01:11 AM
Wow, been 9 weeks already? Hope things will improve some more for you.
I am pretty positive it was $75,000. I will see if I can find that statment again, I remember being shocked at how high the cost was.

pberggren1
04-09-2011, 02:06 AM
How long does the infusion last? I am pretty sure I will get Solumedrol first. I think my dose will be about 700mg.

Sangye
04-09-2011, 02:09 AM
The first infusion takes the longest-- about 5-6 hrs. They have to run it slowly to make sure you don't have an allergic reaction. The next ones will go faster, but they still start it slowly each time. The dose is weight-based, like ctx.

Phil, why did your doc switch you from ctx?

pberggren1
04-09-2011, 02:12 AM
He switched me because he feels that with this new study it is very good proof that rtx is better than ctx at inducing a long lasting remission and he worries about me being on ctx with all the nasty side effects and toxicity and I have been on ctx 4 times before at least 6 months at a time.

Sangye
04-09-2011, 02:15 AM
Yeah, that's a long time on ctx.... I can't wait to see that new study.

pberggren1
04-09-2011, 02:17 AM
I briefly read it on his computer screen. It was on Uptodate.com, a site for docs. I am so blessed to have such a knowledgable and caring doc.

ArlaMo
04-09-2011, 02:26 AM
How long does the infusion last? I am pretty sure I will get Solumedrol first. I think my dose will be about 700mg.
My dosage was 1000mg. I got the Solumedrol first, along with some oral Tylenol and Benadryl. I sat in the chair about 9am and was done about 2:30pm. The nurse told me it would go a bit faster next time since they can start it a little faster, knowing I didn't have any reaction this time.

I'm going to have to get hubby to look up that study, Phil. That up-to-date site was the first thing he looked at when I was diagnosed, but I don't think we've been on for awhile.

pberggren1
04-09-2011, 02:32 AM
Thanks ArlaMo. This puts my mind more at ease. I forgot to ask my doc if I can quit the Amikacin IV antibiotic that I am on for the lung infection since I am also going off ctx. I am wondering if I stay on the Amikacin will the rtx be infused into the PICC line?

elsawind
04-09-2011, 03:09 AM
My husband had 2 infusions the first time in May 2009, since it did not work he had the second in Nov the same year in 4 infusions, sad to say it did not work either.

Brooke
04-09-2011, 04:40 AM
Sorry to hear the Rituxan did not work for your husband. Has he tried the Cytoxin? What involvement does he all have?

Brooke
04-09-2011, 04:42 AM
Phil, I bet they could give it to you via picc line? Is that the same as a port a cath? The nurse asked if I had one, I said no I will be getting IV's each time.

elsawind
04-09-2011, 04:59 AM
He has tried many drugs, Azulfidine (at that time found out the hard way that was allergic to sulfa), cyclophosphamide (Cytoxin) for more than 6 months, Methotraxate, Cellcept, Cyclosporin, Rituxan and finally Remicade. The only drug that still works for him and thank God for that is Prednisone. He has been able to lowered it to 40 mg per day lately.

pberggren1
04-09-2011, 05:07 AM
I'm not sure if the PICC line is the same as port a cath or not Brooke. I am not familiar with a port a cath.

Meredith
04-13-2011, 04:58 AM
Start my Rituxan Friday - a little worried about it but if it keeps me off Cytoxan I will be happy. Been on cytoxan for 2 years at least.

pberggren1
04-13-2011, 06:13 AM
2 years on ctx is not good. You have probably reached your lifetime limit of ctx already. I have been on ctx on and off over the years for a total of about 30 months, mostly at 100 to 125mg daily. I am trying to get rtx soon as well.

Palmyra
04-13-2011, 02:21 PM
Yes, yes...you are so correct Phil....that much time on ctx cannot be good. I have heard from experts at Mayo and at John's Hopkins that too much medication is as bad or worse than too little.

I hope you get approval for rituxan very soon. That said, daughter goes in for round two tomorrow of this most recent series (after 5 years on rtx,) and with each infusion my heart skips a beat. Best wishes to you Phil, and I hope you get approval very soon.

pberggren1
04-13-2011, 02:25 PM
Thank you very much Palmyra. I see my doc on Wednesday, April 13 at 5:30 so hopefully he will have good news then.

drz
04-14-2011, 10:57 AM
Thank you very much Palmyra. I see my doc on Wednesday, April 13 at 5:30 so hopefully he will have good news then.

Waiting to hear the good news.

pberggren1
04-14-2011, 03:06 PM
Doc said we probably will not know til Monday, ****!

Brooke
04-15-2011, 04:49 AM
Just got done with my 2nd Infusion today. Started at 9 AM and was done around 1PM. Went well :biggrin1:

DEE
04-15-2011, 04:50 AM
Well done Brooke :thumbsup::thumbup::hug2:

Sangye
04-15-2011, 05:00 AM
Yay for you, Brooke! Are you done or do you have 2 more? I forgot.... :rolleyes1:

Brooke
04-15-2011, 05:00 AM
Thanks! I have 2 more...

pberggren1
04-15-2011, 08:15 AM
That's awesome news Brooke!

Sr.Roc
04-15-2011, 08:40 AM
i did 4 infusion been done for about two mouths now and i feel like the way i felt be for i got sick

pberggren1
04-15-2011, 09:20 AM
That is awesome news Sr.Roc!

Sangye
04-15-2011, 10:27 AM
That's incredible. Glad you're doing so well. :thumbsup:

Brooke
04-15-2011, 10:49 AM
That is wonderful!

Meredith
04-26-2011, 06:15 AM
Had 2nd round of Rituxan last Friday - no problem. I am hoping this will be the one to put me in total remission. All I know is that I have felt great since I started it. More energy. Still have 2 more treatments.

pberggren1
04-26-2011, 06:24 AM
Awesome to hear Meredith. It sounds like rtx is a good drug for many on here.

Sangye
04-26-2011, 08:34 AM
Happy to hear that, Meredith. I hope you do better each day. :smile1:

Brooke
04-26-2011, 11:27 PM
Glad 2nd round went well Meredith! I have my last one this Thursday, so far so good :)

Chris G
04-27-2011, 01:54 AM
Glad 2nd round went well Meredith! I have my last one this Thursday, so far so good :)

How long was your first remission, Brooke? Was it drug free?

Brooke
04-30-2011, 04:07 AM
I had my last infusion yesterday, it went well but on the way home, I was sooo sleepy... took a 3 hour nap at home. After I woke up, my joints and back, ached, and was still tired and had a headache, worn out feeling. I am feeling a little better today, fine actually right now. I received my infusion about 30 min later than usual so maybe still groggy from Benedryl, I dunno.
I go back to Mayo in 3 months for a follow up.

pberggren1
04-30-2011, 04:56 AM
Hopefullly this is just a quick passing thing Brooke and not a reaction to the rtx or anything else. I felt kinda weird yesterday and today as well. I had lots of blood in my urine last night but it is normal now so I am not sure what is going on.

Brooke
04-30-2011, 05:07 AM
Thanks Phil, I hope so too. I am feeling better and better just still a litle tired now. That is strange that you only had it at night and now you dont. Keep us updated on how you are doing:)

pberggren1
04-30-2011, 05:08 AM
It is strange for sure. I feel pretty normal right now just a bit tired from little sleep last night.

Meredith
05-02-2011, 09:41 PM
Had my 3rd one last Friday - tired/sleepy all day Friday. No aches and pains. Sunday did not feel well but have been fighting a cold, don't think it was the Rituxan. It is Monday now and I am at work - I seem to feel normal. Last Rituxan on Friday. Will miss the wonderful nurse "Doe" who has been with me thru all of these. See the Doctor a week from Friday. I know it will take a few weeks to figure out if it works.

RCOSSIO
05-06-2011, 09:41 PM
Phil its obvious you are tired you are three hours behind the normal folks out in the East Coast

pberggren1
05-07-2011, 04:07 AM
Phil its obvious you are tired you are three hours behind the normal folks out in the East Coast

I thought I was only 2 hours behind you guys.

RCOSSIO
05-07-2011, 05:19 AM
It is what we call Wegeners math 1 + 1 = 3

pberggren1
05-07-2011, 05:45 AM
It is what we call Wegeners math 1 + 1 = 3

Or pred math.:wink1:

Brooke
05-21-2011, 12:19 AM
Had my blood work done on Monday for my 2 week post Rituxan. All labs were good! I haven't seen them but the nurse just told me over the phone that my hemoglobin, liver, and inflammation levels were all good and that my B-Cells are zero. I also had my thyroid checked and that was normal, had my yearly girl appointment and that was good too :) yay!

Sangye
05-21-2011, 01:07 AM
That's great news, Brooke! :thumbsup: