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Questions for anyone who has tried Rituximab/Mabthera

Discussion in 'Rituximab: News and Research' started by Gingergrrl, Mar 9, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I would love to hear from anyone who has tried Rituximab/Mabthera and have some questions. I realize that not many people on PR have tried it, and those who have probably prefer to reply via PM which is absolutely okay, and I welcome replies in any form! ETA: And all replies via PM will be kept confidential and will NOT be shared publicly.

    These are my questions:

    1) How many total infusions did you have? (i.e. was it two infusions total vs. four total vs. two plus maintenance infusions at 3, 6, 12 mos, etc).

    2) What was your dose per infusion? (Was it 375 mg/square meter of body surface)?

    3) What was the length of time in between each infusion?

    4) What was your maximum infusion speed AND how many hours total did the entire infusion take?

    5) What pre-meds and/or post-meds did you take?

    6) What negative side effects did you experience?

    7) Did you have any allergic reaction during or after the infusion?

    8) What benefits did you have and how long before the benefits occurred?

    9) Would you do Rituximab again knowing everything that you know now?

    10) Did your insurance cover it? (or any part of it)?

    11) Were you given Rituximab for ME/CFS, or for an autoimmune disease, for cancer, or for another reason?

    12) Is there any other important info that I am forgetting that would be helpful for me to know?

    Thank you so much in advance to anyone who replies! :hug::star:
     
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  2. Evangeline

    Evangeline

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    I'll answer it here. I'm sure others would be curious - I would be. I'm not here often and this account is linked to an old email address. so if I don't reply to further questions quickly please forgive me. (I think this is the first time in about 2 years I've been here?) Also, I'm on my phone so my spelling etc will be iffy I apologize in advance.


    1) How many total infusions did you have? (i.e. was it two infusions total vs. four total vs. two plus maintenance infusions at 3, 6, 12 mos, etc).

    I've had 12 infusions so far. I started with two, 2 weeks apart in December/ January of '15, then a redose in June/July and then again in November/December.

    2) What was your dose per infusion? (Was it 375 mg/square meter of body surface)?

    No. I'm on the RA dose of 1000mg at day 0 and day 14. I do not have RA.

    3) What was the length of time in between each infusion?

    First interval was 6 months, second interval was 5, have now been moved to 4 month intervals. Next dose is in another few weeks.

    4) What was your maximum infusion speed AND how many hours total did the entire infusion take?

    I'm not sure on speed. Whatever the fastest is (it is different on day 0 and 14). The longest one (first infusion) was about 8+ hours, but that included a ton of paperwork, consult with pharmacist, finding a decent vein and the first dose infusion rate. After that is been roughly 5.5-6 hours. Sometimes it's longer when the infusion nurses run very late or if pharmacy is slow etc.

    5) What pre-meds and/or post-meds did you take?
    I started with the standard pre-meds (1000 mg Tylenol / acetaminophen, 100 mg medrol iv and 50 mg benadryl). The Tylenol doesn't do much except add to the sweating the medrol brings on. I've since convinced the doctor to lower the medrol first to 60 and my next will be at 40. I don't tolerate prednisone all that well and 100 mg iv made me feel horrible. I've kept the benadryl at 50 as it helps with the side effects of the prednisone.


    6) What negative side effects did you experience?

    First of all let me say that not everyone has the same side effects. I have two friends also on RTX for lymphoma they are different from each other and from me. One breezes through hers and the other one is much sicker with RTX than I am.

    Secondarily, if you're like me this drug is going to be really hard on you. To start with there is a compound effect because you're getting 3 drugs, not 1. It's taken some time to figure out what causes what side effects.

    We'll start with the benadryl. If you've never had iv benadryl, but a pill makes you feel loopy you're in for quite a ride. In my case besides the profound sleepiness it also drops my already low BP through the floor it simultaneously drops my heart rate. (Now imagine trying to get up and walk - makes me having POTS on a normal day seem like a cakewalk.You will be up and walking because trust me with 100 mg of prednisone at some point you'll have to get up to go to the bathroom). Then there's the dryness - I have ruined 2 shirts with nosebleeds in the week following RTX. I also have sjogrens which definitely adds to the pre-medication dryness. Along with the dryness comes a headache.

    Prednisone - 100 mg iv at once is a big dose. If I wasn't KO'd from the Benadryl I would probably be screaming at everyone. However since I'm drugged it helps. I don't sleep the night after RTX as a direct result of the medrol. I also feel like crap so it's not like a productive night either. I also shed about 15 lbs of fluid which makes it nearly impossible to not be very lightheaded with any activity. I've done all sorts of things to try to stay hydrated, but prednisone is prednisone. Then there's the rebound of swelling I gain at least 25 lbs back and hold onto it for 7-10 days. Yippee. That's when the migraine hits. Thankfully I take an imitrex which does help somewhat. The other thing is since I've been so sleepy all day I end up starving when the benadryl wears off and the prednisone is still in effect. I've learned to keep easy healthy stuff around because prednisone leaves me with a mega appetite. I'm also too tired to fix myself anything so it helps to have family around to take pity on me and feed me.

    Rituxan infusion 1 - Extremely sore & swollen throat & lymph nodes. High fever (about 100), muscle pain, very sore lower back (it's hard to describe, but every biologic immune suppressant I've taken has done the same thing to me in this regard.) Extreme exhaustion - there is no way I could drive home. I can't even speak in complete sentences - I'm just too tired. I also as mentioned before can't sleep so is a long night of feeling icky. Very brain fogged (might also be benadryl related), feel like I have the worst flu I've ever had or could imagine. Two days of the same follow, by third day I'm a little more functional, but still wiped out. Feel pretty bad for another 7 days. The wierdest side effect is my Calcium level drops and I start having tetany of hands, feet and facial muscles. That's fun.

    RTX 2 (day 14) milder fever otherwise the same, but I spring back faster. Mainly grateful that I'm done and have months in front of me before I have to do it again.

    7) Did you have any allergic reaction during or after the infusion?

    No.

    8) What benefits did you have and how long before the benefits occurred?

    More energy, not quite as much as I had on Enbrel, but definitely lots more than before. A lessening of "sick" - its hard to define, but we all know that feeling of sickness that we can't shake - this helps it. There is a point in my RTX cycle where I feel almost normal again. I can do a lot in a day (even exercise) with no PEM. I have just gotten the ok to move it up to every 4 months. I'm hoping that helps to avoid the part where it wears off. Definitely a reduction in pain (joint) too. No effect on fibro.

    Took FOREVER ..... so, I noticed a minor changes 8 weeks after the first infusion, but it was so small that I thought I was imagining it. By 4 months I was back to being totally exhausted and in agonizing pain so I thought. Swell. Placebo effect. My doc wanted me on it for a year so I sucked it up and did it again. I got a minor improvement at 2 months again, but it built and got more noticeable by month 3 post infusion (9 months post infusion 1). Wore off in 4 months. Repeated the same pattern again this last time which was enough for Dr to up me to every 4 months. I'm hoping a more compressed schedule will help me to improve further.



    9) Would you do Rituximab again knowing everything that you know now?

    Yes. It is hard to take, but I'll give up 2 weeks of my life every 4 months to have energy and be out of pain. That said, if you're like me and you have lots of side effects you'll have to make that choice. I've done LOTS of immune suppressants in the last 5 years. Some are easy, some aren't. It depends on the person and their reactions. It also depends on what they're willing to put up with.


    10) Did your insurance cover it? (or any part of it)?

    Took a court battle of epic proportions - 9 months. They cover 100 % now. So grateful. 13K/ infusion.


    11) Were you given Rituximab for ME/CFS, or for an autoimmune disease, for cancer, or for another reason?

    I take it for multiple autoimmune diseases, but I don't have RA so the insurance company was not going to give it to me. However, I've had CFS for far longer than I've had the autoimmune stuff. The CFS doc I see still believes I have CFS/ME despite the 'diagnosis of exclusion' criteria.

    12) Is there any other important info that I am forgetting that would be helpful for me to know?

    Most people who are on the autoimmune side take RTX with another immune suppressant or two. I take MTX (methotrexate) twice weekly in addition to RTX. The reasons are 1) your body will learn to fight off biologic drugs. Not if, but when. Methotrexate helps to preserve the beneficial effects longer by keeping your adaptive immune system at bay so you ought to look at MTX or azathioprine or CellCept too. You'll probably feel worse before you feel better. Not all biologic drugs work for everyone.

    There is some science that shows the clinical response (at least in RA) may have more to do with T cells being wiped out than B cell depletion. That's about all I can think of. I hope this is helpful. If I think of anything else I'll try to edit this.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @Evangeline Thank you so much for your detailed reply, that was incredible. I had IVIG today (it's a 3-day split dose of high dose IVIG every three weeks) and get up at 6 am three days in a row :eek: so am going to wait to reply on Sun or Mon when am done w/this cycle. I want to respond to many of your points in detail which I am not able to do right now.

    I thought of two additional questions and if you do not know the answers, no worries whatsoever! These are for you or to anyone else who answers my survey.

    1) Do you know how much total fluid volume you received w/each infusion (regardless of the dose)? The two dosing patterns seem to be 600 mg (for women) based on 375 mg/BSA formula OR 1 gram infusion regardless of body surface area. My question is: Whether you received the 600 mg or the 1 gram dose, how much total fluid volume did you receive in a one day? Was it 1/2 liter, one liter, or more? Meaning when you total up the IV saline, IV Benadryl, actual Rituximab, etc, what was the total fluid volume? This part is crucial for me so what I end up doing probably will be different than others.

    2) Did you have the Stratify JCV Antibody test prior to RTX to see if you tested positive for the John Cunningham Antibodies (which are behind PML)? Granted about 60%-80% of the adult population (or higher?) will test positive for these AB's, and it is not a rule-out for RTX, but was wondering if you had this blood test pre-RTX and if you were positive? I test positive for the antibodies but for some reason, it doesn't really scare me b/c I am not taking immunosuppressants and in general am autoimmune and not immunocompromised. And most people that I've talked to did not even take the Stratify test prior to RTX and it turned out fine. I am still curious though since PML can be fatal.

    I will reply to everything else later and thank you so much for answering my questions! I really appreciate it!
     
    Last edited: Mar 17, 2017
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  4. Murph

    Murph :)

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    @Evangeline

    Congrats on having the persistence to obtain and endure a treatment that sounds very hard to get and also tough to endure!

    Couple of questions from me if you're up to answering them:

    1. Do your doctors have a hypothesis on precisely how the Rituximab is helping you? Suppressing an autoantibody? Have they tried measuring you at different levels of wellness to figure out the key factor?

    2. Where in the world are you?
     
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  5. Evangeline

    Evangeline

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    You are welcome. Prior to taking it I looked for as much info as I could find. I just wanted to be prepared as much as I could. There is not a whole lot of detailed patient accounts unless it's on chemo forums and many of those are RCHOP which adds a whole 'nother level to the RTX.

    Not a worry - wait until you're up to it to reply. Those back to back treatments are so hard. I should mention that I have the option available on times to take Rituxan at 8, 8:30, 9 and 9:30 at the infusion center. You can guess which one I choose.

    1) Do you know how much total fluid volume you received w/each infusion (regardless of the dose)? The two dosing patterns seem to be 600 mg (for women) based on 375 mg/BSA formula OR 1 gram infusion regardless of body surface area. My question is: Whether you received the 600 mg or the 1 gram dose, how much total fluid volume did you receive in a one day? Was it 1/2 liter, one liter, or more? Meaning when you total up the IV saline, IV Benadryl, actual Rituximab, etc, what was the total fluid volume? This part is crucial for me so what I end up doing probably will be different than others.

    So the benadryl and medrol are mixed with negligible ml's of water, but the RTX is in a full liter.

    2) Did you have the Stratify JCV Antibody test prior to RTX to see if you tested positive for the John Cunningham Antibodies (which are behind PML)? Granted about 60%-80% of the adult population (or higher?) will test positive for these AB's, and it is not a rule-out for RTX, but was wondering if you had this blood test pre-RTX and if you were positive? I test positive for the antibodies but for some reason, it doesn't really scare me b/c I am not taking immunosuppressants and in general am autoimmune and not immunocompromised. And most people that I've talked to did not even take the Stratify test prior to RTX and it turned out fine. I am still curious though since PML can be fatal.

    No. Here is why. What would I do if I tested positive? Not take it? That wasn't an option. My pain level without a biologic med that works is insane. I enter into a flare of epic proportions. Every joint in my body from my tiny ear joints to my toe joints is involved. Even the lining of my bones becomes inflamed to the point that it feels like my shins (or arms as the case may be) are going to explode from inflammation trapped inside. I end up in dire straights both from a pain point and an energy functionality point. Besides being "regular" cfs any strength I have goes into fighting pain. I have also ended up with permanent organ damage from my immune system attacking me. I would die from my immune system it would just be longer, slower and a lot more painful. If I end up with PML or cancer (again) well, at least I've lived a life before then that had a significantly higher QOL index. Nothing is certain in life, but I knew if I didn't do something my health wansn't likely to improve on it's own. Having an intense level of pain makes the decision easy.

    I've done many, many biologic drugs, (Enbrel, Humira, Simponi, Cimzia, and Remicade) several organ transplant drugs and most of the DMARDS. I've done many of them simultaneously. I've never been hospitalized for infections although I have gotten some weird ones. You can catch kennel cough from dogs (!) if your immunocompromised. That was fun. (Not really.) It is mainly common sense. Wash hands often, avoid sick people (and pets), take the first signs of any illness seriously, err on the side of taking antibiotics (even if it's viral) no live vaccines, but yearly shots for everything else under the sun and stay away from persons (or animals) who have had live vaccines. Stay away from reptiles - that sort of thing.

    Forgot to mention last night that I have a pre-RTX checklist that works for me.
    Skip all antihistamines a week prior to dose 1. Keep nasal passageways hydrated with nasal rinses and sprays. Call infusion center the week before to pre-register, check the rx from the doctor is correct, and that I'm still on the schedule. Always take RTX on a Monday or Tuesday- any issues with post infusion flares or infections can be handled by my regular doctors, not instacare folks or ER docs. (It's always a plus not having to educate a doc on the meds I take nor the proper course of action for treatment.) Have good sleep hygiene prior to infusions (as best possible anyway), be well rested & bank energy. Keep healthy meals pre-made in the freezer. Don't eat out. (I got the stomach flu the day after RTX once - that was horrible. I had no reserves to fight it off. Spent the day in the ER getting fluids and zofran stuffed into me. I decided the risk of food poisioning around RTX warranted the fixing of meals ahead of time.) Keep up on MTX (methotrexate) prior to RTX. I had a sinus infection requiring antibiotics about 3 infusions ago so I was off MTX for two weeks. It made Rituxan MUCH harder. MTX knocks out a goodly portion of my immune system which makes the cell death of Rituxan easier to handle. (That's my theory at least.)
    Keep the benadryl rate slow. I've seen the gamut in other patients from an iv push to my 30 minute slow trickle. Keep the lights off (lupus flare) in my infusion room or wear a stupid amount of sunscreen. Hydrate well during infusion (water & gatorade works best for me). Have gum or hardtack available for benadryl mouth dryness. Most importantly, stay grateful for my improvement and do stuff prior to RTX that reminds me why I put myself through this.
     
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  6. Evangeline

    Evangeline

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    Thanks, that's kind of you to say. I think most people here given the choice would do whatever it took to feel better. The ME/CFS population is incredibly brave - they soldier on day after day waiting, hoping and trying to regain what they've lost often with very little support or understanding from family and worse their dictors.


    1. Do your doctors have a hypothesis on precisely how the Rituximab is helping you? My cfs/ME doc hasn't said, but I'll ask. I see her in a few months. I have a theory though. Granted its just a theory so no way of knowing if I'm right, but I think it's the T cells. Interestingly, in RA patients and Lupus patients they don't show a clinical response unless Tcell depletion takes place in addition to b cells.

    Just one of many:

    https://www.ncbi.nlm.nih.gov/pubmed/23918413

    "PATIENTS AND METHODS:
    Patients with non-Hodgkin lymphoma receiving 4-6 courses of 375 mg/m(2) rituximab underwent detailed assessment of T-cell activation pre- and post-rituximab. A similar analysis assessed the in vitro effect of rituximab on T-cell activation in response to allogeneic dendritic cells (allo-DCs) and other stimuli.

    RESULTS:
    Patients receiving rituximab exhibited a significant decline in IL-2 and IFN-γ levels in peripheral blood, most prominent after repeated rituximab courses. Evaluation at 3 months after rituximab therapy showed restoration of inflammatory cytokine production. Similarly, in vitro stimulation of peripheral blood mononuclear cells in the presence of rituximab resulted in a significant decrease in T-cell activation markers, inflammatory cytokine production and proliferative capacity. These effects were also observed using B-cell-depleted T cells (CD3(+)CD25(-)CD19(-)) and were accompanied with disappearance of CD3(+)CD20(dim) T-cell population.

    CONCLUSION:
    Rituximab administration results in transient, dose-dependent T-cell inactivation. This effect is obtained even in B-cell absence and may increase the infection risk."

    https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-016-1152-5

    "Significant peripheral blood CD4+ T-cell depletion has been observed after a first cycle of rituximab, a monoclonal antibody directed against the CD20 antigen, which is currently used in rheumatoid arthritis. Of note, an absence of CD4+ T-cell decrease has been observed in non-responders. Herein, we describe CD4+ T-cell changes over repeated cycles of rituximab and their relationship with clinical outcomes. ...
    Patients received up to seven cycles of treatment during the study period. Mean CD4+ T-cell counts were above the upper limit of the reference range before each rituximab infusion and repeatedly reached the reference range at 6 months (and/or 3 months) post infusion. CD4+ T cells decreased concurrently with disease activity score. ....
    CD4+ T-cell counts could be a relevant biomarker of response to rituximab in rheumatoid arthritis and could be considered in making decisions about the timing of retreatment."

    Have they tried measuring you at different levels of wellness to figure out the key factor?
    No, although I've volunteered. I'd love to be able to do that.

    2. Where in the world are you?
    Utah, USA
     
    Last edited: Mar 17, 2017
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  7. eljefe19

    eljefe19

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    @Evangeline Hey Utah representin! Thanks for all this great information, I think I'm in the same place as Ginger, RTX has been offered to me, and I would do it in a heartbeat if it wasn't a 30-40k dollar upfront investment, without knowing whether I'll be a responder in 6 months. For much, much cheaper, I can maintain a certain level of health that is, I guess, acceptable. If I was any more sicker than I am, I'd probably do the RTX ASAP.
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    Thank you Evangeline and if I were not at my IVIG right now would reply in detail (which I plan to do later). Am pretty certain I will do RTX no matter what.

    Am curious why you said to stop antihistamines a week prior to IVIG? This is not an option for me b/c of having mast cell disease. I also can't do liter of fluid at a time but we'll figure out a plan for that.

    And I agree that having the JC virus Ab is not enough to stop me since most of the adult population will have this Ab. Will be consulting w/my doctor on Mon to solidify our plan.

    If RTX can give me the chance to walk and breathe normally without wheelchair and drive a car again etc, I have to take it. Sorry my answer is in pieces and fragmented!
     
  9. Evangeline

    Evangeline

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    LOL, yes, but I've lived in a few western States so it's more like western US rep'n. There is no way I could do any $ up front thus the court battle for coverage. Plus, I only had a minor initial response - it's the repeated dosing that makes the real difference - one dose wouldn't necessarily tell you if you're a responder or not and one dose wouldn't change much in the long run either. I wish it would - wouldn't that be wonderful!
     
  10. eljefe19

    eljefe19

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    Yup and that's why I'm holding off for now. By the way I'm not a local Utahn either but somehow I'm here lol
     
  11. Evangeline

    Evangeline

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    Ginger- no problem.
    Am curious why you said to stop antihistamines a week prior to IVIG? I have Sjogren's so I end up with intensely dry nasal & sinus passages anyway. If I take my allergy meds (OTC plus nasal spray in spring) on top of the 50mg of benadryl I end up with perfuse nose bleeds daily for a week. So I suffer allergically for a week in order to allow what little moisture I can to be present for the benadryl on RTX day.

    I also can't do liter of fluid at a time but we'll figure out a plan for that.
    It's given over 5 hours if that helps. You need the volume - RTX plus dehydration isn't pretty. You need to get those dying cells out. I should mention that the lymph system gets a little sore on round one of the series and you might get the runs a few days post infusion. That's pretty standard too.

    If RTX can give me the chance to walk and breathe normally without wheelchair and drive a car again etc, I have to take it.
    So I went from being couch-bound from exhaustion and pain, and on tons of percocet and Tramadol (10mg every 4 hours) and MEGA doses of medrol (oral) plus celebrex trying to survive pain and a ESR of about 100 and CRP of 4.

    I'm in the "it's wearing off phase" so this will reflect that, but I'm now on 100 mg of Tramadol when it wears off an ESR of 25 and a CRP of 2.? I could not lift a glass cup without pain, I could not walk through a store without having to ice my joints later, I could not drive, I could not even pour the milk on my cereal. I was in too much pain. This morning I did a load of laundry walked my rambunctious yellow lab for 30 mins, went through the grocery store. This afternoon I've got to deal with the plumber and get my sink fixed and run a couple more errands. I'm sore and cranky because I've got stuff to do and I'm in pain, but it's manageable pain and fatigue. ( Manageable unless I do something really dumb like a carry a 40 lb bag of dog food up two flights of stairs and then a bag of fertilizer. I did that last week - really dumb idea. Took a couple of days to have my hand joints calm down.)

    When its working 100% I can do the above without repercussions.

    The breathing thing - one of my horrors of uncontrolled immune system is never ending pleurisy and costcochondritis. It comes back a bit as the RTX wears off, but being able to breathe easily -more importantly without pain - is amazing.
     
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  12. Evangeline

    Evangeline

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    Smart idea to hold off if you're holding your own. You know, the medical care in this state is exceptional. I am really pleased, so much so that I'm never planning on moving.
     
  13. Evangeline

    Evangeline

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    One more thing I've thought of. I actually preferred Enbrel to Rituxan. I had superior energy and pain control from Enbrel. Plus it was much easier to take. Simponi also worked well. Both of those lost efficacy quickly though. It's hard to pull a flowers for algernon, but it is common. Losing those two has encouraged me to never be ungrateful for improvement even for a short time. After losing those two no other TNF-a worked. I like MTX or Azathioprine over cellcept and arava for adjuvant therapy.I actually tolerate Azathioprine better than MTX, but it's more toxic so I'm on MTX now.

    The MTX by itself also improved my symptoms of fatigue / functionality. Just not enough. I do injection- 15 mg twice week.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Evangeline Thanks for understanding my replies are fragmented b/c at IVIG and my phone not letting me quote or multi-quote like I can from computer.

    We are different re: antihistamines b/c I do not have sjogrens and I require antihistamines for MCAS. Dryness and nosebleeds are not an issue for me. I have done IV Benadryl before and can tolerate it as long as not an excessive or prolonged dose. In general I take Atarax as pre-med for IVIG (but there is no IV form of Atarax) so would take Benadryl.

    Re: fluid amount, I would not be able to do a liter in 5 hrs (and don't know what the answer will be for this) but wondering if RTX ever given in a split dose like I do w/IVIG. I do approx 1/4 to 1/3 liter in seven hrs. Am pulmonary edema risk from third spacing (plus anaphylaxis risk).

    ETA: Am hoping the 600 mg dose requires less fluid than the 1 gram dose but not sure how diluted it needs to be?
     
    Last edited: Mar 17, 2017
  15. Evangeline

    Evangeline

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    I'm on my tablet so same issue. (As a side note What I wouldn't give for your moist nasal passages! ) If you've done iv benadryl before and you're used to it then it should definitely be less of an issue for you. Out of curiosity what would you consider to be an excessive dose? One friend of mine has allergic reactions so she gets redosed with benadryl periodically through her infusion. Her drip rate is also slower than mine. She still takes it despite her reactions which are managed by the infusion nurses and her oncologist.

    I'm sure they can work something out fluid wise. I wouldnt worry anout tthat. Besides the prednisone will drain lbs of fluid off of you. Are you working with an oncologist or rheumatologist? They use this stuff so much it's like aspirin to them.


    The one thing I've learned is everyone takes their rituxan differently. Different drip rates, dosages and schedules. It's a very customizable thing. The best advice I can offer is plan for the worst, hope for the best and take it for a year (unless you end up with a Steven's Johnson Syndrome) before making a final decision. My friend has anaphylaxis type reactions, and full body hives, but it's managed because she has horrible lymphoma. My other friends gets a bit tired, but otherwise is fine. You never know what end of the spectrum you'll be on.
     
  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Actually this is quite wrong Evangeline. I invented this treatment for RA and lupus in 1998 and in some 500 or so patients whose treatment I was involved with before I retired T cells remained normal but patients got better. Response has nothing to do with T cell levels!

    Another small point is that there is no need to give methotrexate with rituximab. Methotrexate is given with infliximab to prevent immune resistance but it is not needed for rituximab. The license was with methotrexate because the drug company thought they could patent the combination. But we quashed the patent.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @Jonathan Edwards Do you know what is the minimum amount of fluid volume that RTX can be given in? Someone in my FB group just told me he got RTX in 250 ml of fluid (saline) and posted picture. Does this sound right b/c this would be do-able for me!

    Also, if someone tests positive for antibodies to the JC Virus on the Stratify test, would this make them a higher risk for PML (or would this not be a concern for you)? Is there another way to test & monitor JC Virus or only via the antibodies?
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    @Evangeline Sorry for the delay and am finally getting a chance to reply to this like I wanted to yesterday. Am at my 3rd day of IVIG tomorrow in case I am slow again! Thank you so much for all of your detailed feedback.

    It sounds like you started with the traditional autoimmune dosing of two infusions, given 2 wks apart (days 0 and 14). We are deciding if this is the best way for me vs. the myasthenia gravis dosing of four infusions, given one week apart (I do not have MG but using this as an example). Am not sure if I understand the rest of your dosing schedule? Did you have maintenance infusions at 3, 6 & 12 months point, or just every six mos you had another set of two infusions?

    We are deciding if I will do the 375 mg/BSA formula (around 600 mg per dose for women) vs. the 1 gram formula regardless of weight.

    How did they decide that interval? I have not heard of that before!

    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). The Infusion Center where I get my IVIG every 3 wks is actually a cancer center and they do RTX very frequently. Their protocol is to give IV Benadryl & Tylenol as pre-meds and only give solu-medrol if someone has a reaction. This would actually be my preference although I am not sure if my doctors will want me to have the solu-medrol as a pre-med. If they do, then I will definitely follow their advice and do the solu-medrol (at lowest dose possible).

    I actually have had IV Benadryl when I was in the hospital in summer 2015 (was having anaphylaxis to all food but water at that time due to MCAS). I tolerated the IV Benadryl (25 mg) with no issues until after I d/c'd from hospital and was having IM Benadryl shots and pills and it all accumulated over a 2 week period and I had a horrible toxicity reaction. I have never taken Benadryl in any form since and switched to Atarax. But am certain that I could handle 25 mg of IV Benadryl as a pre-med (instead of the Atarax) for the RTX.

    I am hoping to avoid Prednisone but if I do take the solu-medrol, am fairly certain my dose would not be that high.

    That is interesting and do they measure calcium levels after RTX? Is this common? Do you have any of the VGCC Calcium Channel Autoantibodies?

    I am amazed that you did not have any allergic reaction and this is actually my biggest fear.

    I have never taken any immune suppressants (unless you count Cortef?).

    I am also prepared for a battle of epic proportions but my doctor feels confident that we will get insurance to cover it. I have great faith in him, so am waiting until after we speak next week to figure out the plan, but I think we are requesting it for May b/c we are still using my current IVIG Auth.

    I do not have RA either. I am kind of the opposite of you and my doctor (and myself) no longer believe that I have ME/CFS vs. multiple autoimmune antibodies/diseases that are all driven by the B-Cells causing all kinds of problems w/my muscle strength, breathing, POTS, etc.

    In my case, I will just be doing RTX alone (unless by a true miracle I will be allowed to extend my IVIG Auth as well) and then we will overlap the two.

    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).

    Did you literally mean water or saline? Sorry, just wanted to clarify! Also, does the RTX have to be in a full liter? My mast cell doctor (who would be referring me to the infusion center w/my main doctor) would never allow me to do a full liter that quickly b/c I am a pulmonary edema risk. I've talked to many people in two other groups I belong to (for my calcium autoantibody and for LEMS) and there seems to be great variety in the amount of saline given w/RTX. One person said he had the RTX in 250 ml (1/4 liter) of saline which would be do-able for me even w/the IV Benadryl 30 min prior.

    That is how I feel at this point. Wikipedia (I know not the greatest source LOL) says that 70-90% of the adult population will have antibodies to the JC virus like I do. It seems the risk for PML is rare and is higher if you are immuno-compromised with HIV (which I'm not) or taking other immuno-suppressants (which I don't). I plan to ask my doctor if the JC Virus is only measured by antibodies or some other way? I had the "Stratify" test and was positive at 2.46 (above 0.4 is positive) but am not sure how high it can go? I think it just means that I can mount an IgG antibody response but am not sure that it actually makes me a higher risk for PML. But I could be wrong and plan to learn more about this.

    This would be impossible for me b/c I have MCAS. I am in remission (with my MCAS meds) and even though the amount that I take now compared to 2015 is incredibly & significantly lower, I still require some. If I were to stop them, the chances of an allergic reaction would be much higher and not something I would ever risk.

    Mine would definitely be a 30 minute infusion and this is the policy of my infusion center. I have never seen them do an IV push on any patient w/Benadryl.

    Am not in Utah but am with you guys in the western US!

    I am in the weird freak group who does not need the volume. Actually to clarify, I do need the volume but my body cannot handle it and I get third spacing and increased risk for pulmonary edema. My MCAS doc said that fluid loading (with saline or even drinking huge amounts of water) would be dangerous for me even though I have POTS and dysautonomia. He said 6-8 cups of fluid per day is the right amount for me even when I have IVIG and he has turned out to be right.

    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? If not, do you have pulmonary restriction? I have not tested this since 2015 and will be trying again in April or May to see if I've had any improvements from IVIG. My overall muscle strength is vastly better so am curious if my breathing tests have improved (although I still doubt that I could pass one).

    Thank you again for sharing your experience w/me about RTX. Am hoping this helps others down the line...
     
    Last edited: Mar 17, 2017
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I have always given rituximab diluted according to the manufacturers instructions. I would not play around with that because we do not have information on hazards if different concentrations are used. From what I can see a gram can be given in 250ml of dextrose solution - i.e. no salt load. The load on your circulation and kidneys would be much more gradual than having a cup of tea. I do not believe there could be a problem there.
     
    Sancar and Gingergrrl like this.
  20. Gingergrrl

    Gingergrrl Senior Member

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    @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?
     

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