Questions for anyone who has tried Rituximab/Mabthera

[Jonathan Edwards]

@Jonathan Edwards So, you would mix RTX with D5-Dextrose solution vs. normal saline (or am I totally misunderstanding)?

Also, if someone tested positive for the Stratify (JC Virus) Antibody Test, would this be of concern to you re: their PML risk with RTX? I know most do RTX without knowing if they test positive for JCV antibody but now that there is s test for it, is it useful in your opinion and something to consider or measure further?

You would need to ask your physician for advice on what suits you.

I do not have any information on the JC virus tests.

 

[Gingergrrl]

You would need to ask your physician for advice on what suits you.

I do not have any information on the JC virus tests.

Thank you and I have a phone consult w/my doctor tomorrow and will definitely be asking all of these questions. I was very curious when you mentioned using dextrose vs. saline for RTX (b/c I had never heard this before from my docs or the nurses at the infusion center where I get my IVIG) so was very interested what you used since you invented the RTX autoimmune protocol.

I would never assume it would be what I'd use or take it as medical advice. I know Gamunex (IVIG) can only mix w/dextrose vs. saline but had never heard of this w/RTX so was very curious! Thank you again for all of the great info.

 

[Gingergrrl]

My favorite nurse at the infusion center (am doing 3rd day of IVIG now) just printed out the full RTX Protocol for me that the nurses use! Am going to read this tonight before my consult w/my doctor on Mon. It says you can use saline or dextrose (but their pharmacy uses saline) and you can do 500 ml (vs. full liter) so I should be okay (unless allergic which no one can predict until I try it) and hopefully I will not get PML or one of the rare side effects. And hopefully my insurance will even cover this so all of my research and planning is not for nothing!

 

[Evangeline]

You are so welcome. I apologize for not getting back to you sooner. Just found out I've got company coming to stay and they leave the day before RTX. Been running around like crazy getting ready for company and RTX. Naturally, I overdid it.

So, my insurance company dictated the schedule. They wanted to give me as little as possible while still having me be treated. That required an initial wait of 6 months between dose 1 (which is day zero and day 14) & 2 (dose day 0 and 14 again). It was obvious that 6 mos was way too long so we appealed for a five month between doses. That was still too long. Appealed again and got permission for 4 months /16 weeks between doses.

"I am fine w/Tylenol (as long as it is dye-free) so this part is a non-issue. I have never had solu-medrol (or any form of Prednisone and already suspect that I will not do well w/it)."

Interesting. I would think with what (very) little I know about MCAS that prednisone would be a treatment that was used for at least acute episodes. My rheumatologist told me one reason they give solu-medrol/prednisone with Rituxan is to quell potential allergic responses. Every infusion center is different, Mine goes strictly by prescribed orders from physicians which means some people get pre-meds and others do not.

I do hope the benadryl goes well for you - that must have been terrifying having such a bad reaction!

I wouldn't necessarily decide against a high dose medrol. If you're prone to such extreme allergic reactions then perhaps it would help you. I would definitely talk to your doctor about it.

"That is interesting and do they measure calcium levels after RTX? Is this common? Do you have any of the VGCC Calcium Channel Autoantibodies?" They do in me because I have an issue with it. My doctor has never seen it before. No antibodies that I know of.
I am not usually allergic - unless there is a cat around - my main issue is my immune system is so ridiculously strong.

Sure, Cortef counts. I need multiple immune suppressants at the same time. My record was 5 at one time.

"Many patients at my infusion center do CHOP or RCHOP for their chemo and they seem to do quite well with it (during the infusion I mean... I have no idea what happens once they go home)." I had a friend on RCHOP followed by RTX maintenence. She would leave the infusion center normal and get sick 48 -72 hours post infusion. Everyone is different.

"Did you literally mean water or saline?" Apologies - saline.
"Also, does the RTX have to be in a full liter?" Not sure.

"I have never had pleurisy and costcochondritis but I have weak breathing muscles and also have POTS. I struggle with breathing when standing up but am totally normal breathing lying down & sitting. Are you able to pass a spirometry or PFT test?" Yes, my volume is 120% of normal unless I have pleurisy or c.chondritis. Then I can't do it due to pain /inflammation.

I hope you do well with RTX and can get better! That would be amazing. Best of luck to you! Keep us posted on your journey.

E.

 

[Gingergrrl]

You are so welcome. I apologize for not getting back to you sooner. Just found out I've got company coming to stay and they leave the day before RTX.

Hi E, No worries about your delayed reply and best wishes with your company visiting.

So, my insurance company dictated the schedule. They wanted to give me as little as possible while still having me be treated. That required an initial wait of 6 months between dose 1 (which is day zero and day 14) & 2 (dose day 0 and 14 again). It was obvious that 6 mos was way too long so we appealed for a five month between doses. That was still too long. Appealed again and got permission for 4 months /16 weeks between doses.

Thanks for clarifying and I was not sure if your insurance company dictated your schedule or if there was a clinical reason decided by your doctor. My situation will probably end up being a combination of both. We think one infusion might be enough for total B-Cell depletion and we will be measuring my B-Cell levels ongoing to determine when to have the next infusion. We will use the autoimmune dosing of days 0 and 14 and the 375 mg/BSA formula but a lot depends on my specific test results re: how we proceed. And of course what insurance will authorize b/c I cannot afford to pay for this privately. We are aiming for end of May or early June so I can finish the next three cycles of high dose IVIG first (which has been very beneficial for me and we don't want to lose the opportunity).

Interesting. I would think with what (very) little I know about MCAS that prednisone would be a treatment that was used for at least acute episodes. My rheumatologist told me one reason they give solu-medrol/prednisone with Rituxan is to quell potential allergic responses. Every infusion center is different, Mine goes strictly by prescribed orders from physicians which means some people get pre-meds and others do not. I do hope the benadryl goes well for you - that must have been terrifying having such a bad reaction!

My infusion center (if I get the opportunity to do RTX there which is my dream scenario) gives IV Benadryl & Tylenol prior to the infusion. If there is any sign of reaction, then they'll give solu-medrol. My doctor confirmed that his center uses the same protocol even on MCAS patients. I do not do well w/steroids (except my daily Cortef is fine). I was not allergic to IVIG whatsoever so it is possible that I will not be allergic to RTX with the IV Benadryl. But if I am, we'd immediately stop the infusion and give solu-medrol. I know it is risky but am more than prepared to take the risk.

I am confident the IV Benadryl (one dose) will be fine b/c I was having it 2x/day for about five days when I was in the hospital w/no problem in 2015. It was not until we switched to Benadryl injections (plus Benadryl pills) that I reached a toxicity reaction which was very dangerous. I have not taken any Benadryl since 2015. I do better w/Atarax but it does not come in IV form so will have to do Benadryl. But for an isolated day or two, am certain it will be okay.

I wouldn't necessarily decide against a high dose medrol. If you're prone to such extreme allergic reactions then perhaps it would help you. I would definitely talk to your doctor about it.

We discussed it in detail and most likely will go w/the plan above. My main doctor will discuss w/my MCAS doctor and if he feels that I need the solu-medrol as a pre-med, we will do as he advises. We also have Decadron as another option. But I suspect that he won't.

They do in me because I have an issue with it. My doctor has never seen it before. No antibodies that I know of. I am not usually allergic - unless there is a cat around - my main issue is my immune system is so ridiculously strong.

So, they monitor your calcium level after every RTX infusion? That is interesting to me b/c in the RTX prescribing info that I got from one of the nurses at my infusion center, it says: "CD20 regulates cell cycle initiation and possibly functions as a calcium channel". Truthfully my non-science brain did not know what that meant but I asked my main doctor how it could relate to someone like me w/the CA+ Channel autoantibodies and he did not think it was an issue and has used RTX in other patients w/my autoantibody with no problem.

"Did you literally mean water or saline?" Apologies - saline.
"Also, does the RTX have to be in a full liter?" Not sure.

I figured you meant saline (not water) but just wanted to be sure! I discussed the total fluid volume issue in great detail w/my doctor b/c this is potentially one of the biggest problems for me. Many centers give pre and post RTX saline in addition to a full liter of saline w/the RTX and I will not be able to tolerate this much fluid volume or infusion speed. The infusion center and my doctor confirmed that you can do RTX in 1/2 liter of saline and don't need all the pre and post fluids (except of course whatever amount of saline is needed to go w/the IV Benadryl). He also said we can divide RTX into a two-day split dose. It will all depend on what is agreed upon by my main doc and MCAS doc once they speak about this closer to May.

Yes, my volume is 120% of normal unless I have pleurisy or c.chondritis. Then I can't do it due to pain /inflammation.

So your FVC (forced vital capacity) is 120% of normal?!!! You must have incredible lungs! My very best score was 76% and my worst score was 66% giving my best effort. But have not done this test since 2015 and am curious to see if it has changed since doing IVIG. Am going to be trying it again in April or May. I would love to be able to pass the test (FVC of 80%) but honestly have no idea if I will.

I hope you do well with RTX and can get better! That would be amazing. Best of luck to you! Keep us posted on your journey.

Thank you so much and will definitely share the experience on PR if it happens. So much will be dependent on my insurance in May.

 

[Evangeline]

"Hi E, No worries about your delayed reply and best wishes with your company visiting."

Thanks!


"Thanks for clarifying and I was not sure if your insurance company dictated your schedule or if there was a clinical reason decided by your doctor. My situation will probably end up being a combination of both. We think one infusion might be enough for total B-Cell depletion and we will be measuring my B-Cell levels ongoing to determine when to have the next infusion."

Is this like a lymphocytes count?

"We will use the autoimmune dosing of days 0 and 14 and the 375 mg/BSA formula but a lot depends on my specific test results re: how we proceed. And of course what insurance will authorize b/c I cannot afford to pay for this privately. We are aiming for end of May or early June" I hate insurance battles. I hope they just let you try it without a ton of fighting.


My infusion center (if I get the opportunity to do RTX there which is my dream scenario) gives IV Benadryl & Tylenol prior to the infusion. If there is any sign of reaction, then they'll give solu-medrol. My doctor confirmed that his center uses the same protocol even on MCAS patients. I do not do well w/steroids (except my daily Cortef is fine). I was not allergic to IVIG whatsoever so it is possible that I will not be allergic to RTX with the IV Benadryl. But if I am, we'd immediately stop the infusion and give solu-medrol. I know it is risky but am more than prepared to take the risk.

I am confident the IV Benadryl (one dose) will be fine b/c I was having it 2x/day for about five days when I was in the hospital w/no problem in 2015. It was not until we switched to Benadryl injections (plus Benadryl pills) that I reached a toxicity reaction which was very dangerous. I have not taken any Benadryl since 2015. I do better w/Atarax but it does not come in IV form so will have to do Benadryl. But for an isolated day or two, am certain it will be okay."

That's good. The last thing anyone needs is a reaction to rituxan!

So, they monitor your calcium level after every RTX infusion?
Yes. My lowest was about 7.

"So your FVC (forced vital capacity) is 120% of normal?!!! You must have incredible lungs! " I do, thank you! Opera voice training will do that.

 

[Gingergrrl]

Is this like a lymphocytes count?

I honestly am not sure and I know we will do on-going serial B-Cell levels but now sure specifically how this is done?

I hate insurance battles. I hope they just let you try it without a ton of fighting.

I am also hoping that they will approve the RTX but it is so hard to know until we ask (and we are waiting so I can finish my IVIG first).

That's good. The last thing anyone needs is a reaction to rituxan!

Believe me, the thought of getting anaphylaxis from RTX does scare me but I am willing to take the risk.

Yes. My lowest was about 7.

Interesting and I will ask my doctors about the idea of monitoring my calcium levels after RTX (assuming I get it). I am being positive and having faith it will happen but don't want to get over-hopeful!

I do, thank you! Opera voice training will do that.

That is amazing! My lungs itself are okay but my problems appear to be a combination of dysautonomia and weak muscle strength to the diaphragm and other extra-pulmonary muscles that support breathing. I was never an opera singer but I sang in high school, college, other choirs, etc, and now cannot even imagine when I think back on the breath support that I had. It is truly like a different life-time.

ETA: Let me know if you want me to teach you how to use the quote boxes or multi-quote feature. It is pretty easy and I am one of the least computer literate people on earth .

 

[Marky90]

In the literature 4 (ish) out of 125 000 got rituximab-associated PML, and the cases were already immunosupressed upon taking rituximab. There is no need to test for the JC-virus if you`re not immunosupressed, most people have it latent anyway.

 

[Gingergrrl]

In the literature 4 (ish) out of 125 000 got rituximab-associated PML, and the cases were already immunosupressed upon taking rituximab. There is no need to test for the JC-virus if you`re not immunosupressed, most people have it latent anyway.

@Marky90 ITA with you and the chance of PML from RTX is unbelievably small. I know it is a higher risk with some MS meds like Tysabri. Even though I tested positive for JC Virus on the Stratify test, I was told that 70-90% of the adult population will test positive. It also might be a false positive b/c of passive antibodies from IVIG so we are going to re-run the test (along w/a few others) on the day before my next IVIG to compare. But either way, it will not stop me from trying RTX. The things in my life that have almost killed me have been an antibiotic, normal IV saline, and allergic reactions to food. I just don't see PML as a major risk.

 

[valentinelynx]

if I were not at my IVIG right now

@Gingergrrl — does this mean you have to go to an infusion center to get your IVIG? Is that why you have to get up at 6:00 AM? Wow, I just assumed that home infusion was easily available. BTW, somehow, someway, Dr K pulled a miracle and got my IVIG re-approved with my new health insurance, and at high dose, not replacement dose! I don't know how he can stand fighting with insurance companies all day (I couldn't) but am so glad he does. And I'm also glad to get my infusions at home.

 

[Evangeline]

Ginger- let me know how your doctors monitor the levels. I'd be interested in following mine. My rheumatologist is pretty willing to add on lab work to our usual stuff.

That's great that you are a singer too. I sing better ( & with better breath control & volume / support) on days that I feel better. Flare days and tired days I don't even try.

Thanks, I do know how to use the quote boxes, but my tablet's keyboard performance is "iffy" so I cut and paste into a memo pad to write. There are a few places (facebook and here for example) that my keyboard doesn't even want to pop up. Very annoying.

 

[Gingergrrl]

@Gingergrrl — does this mean you have to go to an infusion center to get your IVIG?

I do the IVIG in an infusion center b/c it is safer for me with my history of severe MCAS/allergic reactions and pulmonary edema from saline infused too fast. My doctors do not feel I am a candidate to do IVIG at home and I 100% agree with this. It definitely works for many people but too high risk for me.

Dr K pulled a miracle and got my IVIG re-approved with my new health insurance, and at high dose, not replacement dose! I don't know how he can stand fighting with insurance companies all day (I couldn't) but am so glad he does.

That is great news!

Ginger- let me know how your doctors monitor the levels. I'd be interested in following mine.

I will not be doing RTX until the end of May (at the earliest) but will let you know once I get to that point. I just like to gather info and plan ahead!

That's great that you are a singer too.

I was a singer about 20 yrs ago but certainly not any more! I still love listening to music but that is the extent of what I can physically do at present!

 

[valentinelynx]

I do the IVIG in an infusion center b/c it is safer for me with my history of severe MCAS/allergic reactions and pulmonary edema from saline infused too fast. My doctors do not feel I am a candidate to do IVIG at home and I 100% agree with this. It definitely works for many people but too high risk for me.

I understand. On reflection I figured that was probably the reason, as I recall you having reported those concerns in the past. Just a thought, though... if after a while, you find that your infusions are going well without any adverse incidents, you might consider having them at home. You will still be monitored the entire time by an RN. At first, I worried that having an RN stay with me the entire 5 hours of the infusion for two days would be intrusive (I'm not that social a person, even when healthy). Fortunately, my nurse and I got along really well. And I could go lie down at any time and she would just do her work in the living room.

I've never had any problems with the IVIG during the infusion. However, when I first started, about 8 hours after the infusion, I would get high fevers (103.5 +) and headache/body aches. So, even being in an infusion center wouldn't have helped. Premedication with stress dose hydrocortisone and Celebrex eliminated the reaction, and I haven't had any problems with the infusions since then, even after switching to much higher dose IV IG.

Actually the reactions happened with HyQvia, the subcutaneous version of gamma globulin, for which I did not need continuous monitoring: after the first couple of infusions I was completely on my own. I didn't like HyQvia: I found the subcutaneous infusions to be pretty painful. IVIG is a breeze by comparison, at least with a PICC.

I hope your infusions go well and that you continue to get benefit. I still haven't noticed a large benefit with mine, but I don't think having such a low level of gamma globulin can be a good thing—higher risk of infections and cancers, for instance. Now that I've been off of the infusions for 3 months, thanks to insurance nonsense, maybe I will notice a difference when we restart. I may need an even higher dose (Dr K wanted to do 2 g/kg) for proper autoimmune treatment, but I doubt insurance will go for it.

I am glad you are getting treatments that work. We're jumping through the hoops for Rituxan now, also, so I am watching your posts with interest. Thanks for asking the questions in this post!

 

[Gingergrrl]

Just a thought, though... if after a while, you find that your infusions are going well without any adverse incidents, you might consider having them at home.

It just would not be safe for me per both of my doctors and I agree. My infusions are given at a very slow rate (7-8 hrs for three days in a row) and the infusion center nurses are all trained to work with mast cell patients. Even though I have not had any problems during an infusion, if I did get pulmonary edema or anaphylaxis, I am just a few minutes from the emergency room. A home health nurse would not have access to everything that the ER would and if they had no familiarity with MCAS, it could be very risky for me. I am willing to take big-time risks but to do them as safely as possible at the same time.

 

[valentinelynx]

It just would not be safe for me per both of my doctors and I agree. My infusions are given at a very slow rate (7-8 hrs for three days in a row) and the infusion center nurses are all trained to work with mast cell patients.

I wouldn't argue with that. And if you are comfortable at the infusion center, that's wonderful. I was just thinking, say it's been a year or two and never a problem... Meanwhile, I'm glad you are getting helpful treatments!

 

[Gingergrrl]

I wouldn't argue with that. And if you are comfortable at the infusion center, that's wonderful. I was just thinking, say it's been a year or two and never a problem... Meanwhile, I'm glad you are getting helpful treatments!

Thanks, VL, and my MCAS doc said that since each batch of IVIG is from different donors, in theory an allergic reaction could occur after the 100th infusion. I don't believe that it will, but it could, so I need to be at infusion center where they can get me to the ER within minutes. I think it's hard to explain to someone who does not have MCAS. Logically I'd do it at home if I could but just too risky.

ETA: I realize that I do not know if you have MCAS and was making this comment as a general statement. My MCAS was so severe in summer 2015, that we have learned to take all necessary precautions.

 

[valentinelynx]

Thanks, VL, and my MCAS doc said that since each batch of IVIG is from different donors, in theory an allergic reaction could occur after the 100th infusion. I don't believe that it will, but it could, so I need to be at infusion center where they can get me to the ER within minutes. I think it's hard to explain to someone who does not have MCAS. Logically I'd do it at home if I could but just too risky.

ETA: I realize that I do not know if you have MCAS and was making this comment as a general statement. My MCAS was so severe in summer 2015, that we have learned to take all necessary precautions.

I do have MCAS, but it is very mild compared to yours. Thankfully, I've never had an anaphylactic attack. When I started with gamma globulin, though (the sub-Q version), the company insisted that I have an EpiPen at hand at all times during infusions—that was a bit alarming. I hope I never have to use it!

 

[Gingergrrl]

I wanted to update this thread I started on Rituximab after just talking w/my insurance. I've lost track of how many calls I have made to them re: this issue (and how many times my doctor has faxed in the request... at least three?). First they did not receive it, then it was on the wrong form, etc.

Long story short, they've now received everything on correct forms and told me that they will expedite the decision so my doctor should know the answer by tomorrow! Based on past experience, I am not confident this will occur but at least there is a possibility that they will give my doctor a decision soon. It also does not mean the decision is "Yes" but at this point, I prefer to get any decision, even if the answer is no, so we can start the appeal process.

I am so excited that it is finally at the decision stage b/c my IVIG Auth is over and if am denied Ritux, we will be requesting additional IVIG (if this went beyond another 3-4 more wks) and now we may not have to! Even though I would be very grateful to have additional IVIG, and it's been an incredibly helpful treatment, it's been challenging to have IVIG every 3 weeks for the last ten months (vs. just two infusions of Ritux)! I will keep you guys posted and will share the experience in the hope that it will help others.

 

[Kenny Banya]

ETA: I realize that I do not know if you have MCAS and was making this comment as a general statement. My MCAS was so severe in summer 2015, that we have learned to take all necessary precautions.

What are your symptoms of MCAS?

 

[valentinelynx]

Long story short, they've now received everything on correct forms and told me that they will expedite the decision so my doctor should know the answer by tomorrow! Based on past experience, I am not confident this will occur but at least there is a possibility that they will give my doctor a decision soon. It also does not mean the decision is "Yes" but at this point, I prefer to get any decision, even if the answer is no, so we can start the appeal process..

@Gingergrrl — I just read this. Been working, which takes 101% of my energy (meaning more than I have), so no reading the forum ... I do hope you got your "expedited" decision, and hope even harder that it was in your favor! The insurance companies try their hardest to kill us with stress! Rooting for you.