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How to get prescribed Rituxan?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Blake2e, Sep 20, 2018.

  1. Blake2e

    Blake2e

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    Hi,

    Does anyone have any tips on how to get prescribed Rituxan in a way that insurance would cover at least some of the cost?

    If youre on Rituxan or have ever been how did you get prescribed it?

    My hematologist wants to prescribe it but we have to figure out a way to offset the cost a little. Any ideas would be awesome.
     
  2. Wonkmonk

    Wonkmonk Senior Member

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    Perhaps you may want to look at the threads of Gingergrrl or try dropping a PM. She had a real battle until she was approved, but she was successful (and the treatment was, too).
     
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  3. Blake2e

    Blake2e

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    Hi @Gingergrrl I looked into your posts and I couldn't find any solid info on how to get insurance to help with Rituximab. I'd really appreciate your input as I saw your diagnosis and they're not what what the FDA approves this drug for.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    I have never posted the names of my primary or secondary insurance plans to protect my privacy and confidentiality but it really depends on your insurance if they are willing to prescribe something off label. Most private insurances will but they make the doctor jump through endless hoops, rejections, appeals, etc, just to get the first prior Auth.

    In my case, once we had the Auth for IVIG, I did one full year of IVIG before we requested an Auth for Ritux. When I started IVIG my insurance was different than when I ended which made it even more complex. But overall, because I had such an incredible response to high dose IVIG, and because IVIG is a gazillion times more expensive for my insurance (both b/c it is a more expensive drug and because I was doing a 3-day split dose), my doctor presented a brilliant plan to taper off the IVIG to Rituximab. IVIG is more of a temporary solution vs. Rituximab (which is cheaper for them and potentially could lead to a permanent remission).

    My insurance approved the Rituximab (but not without a fight). My diagnosis was also much more clear by that point in 2017 and although I have several diagnoses, the one that got the approvals was LEMS (Lambert Eaton Myasthenic Syndrome) combined with my level of disability at that time (24/7 wheelchair, endless failed spirometry and breathing tests, severe muscle weakness, multiple autoantibodies and positive ANA titer, Autoimmune POTS, MCAS with anaphylaxis, etc). My doctor wrote a very strongly worded letter and cited multiple journal articles in it as part of his appeal.

    Edit: I forgot my original point which is that the actual FDA only approves Rituximab for certain cancers, rheumatoid arthritis, and a few other conditions. Almost everyone who gets it in the US is doing it off-label. Even if you were doing it for confirmed lupus like a friend of mine did, it was still off-label per the FDA.
     
    Last edited: Sep 23, 2018
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  5. Blake2e

    Blake2e

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    Thank you so much for your reply Gingergrrl! Now I see what needs to be done. I had a similar problem with getting IVIG even after finding out I have primary immunodeficiency (antibody deficiency). Hopefully the battle for Rituximab doesnt take as long as it took for IVIG.

    Side question: are you really getting off of IVIG? I would think staying on at least a non-autoimmune dose would be good especially if youre on Rituxan and not making antibodies.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    No problem and PM me if I can be of any further help.

    The initial Auth for IVIG took much longer to get approved than the Ritux. My doctor said it is easier to get IVIG approved for primary immune deficiency but I do not have that and my IgG sub-classes were normal. All of the evidence in my case was autoimmune.

    Yes, I am totally done with IVIG and my last infusion was mid-July (exactly ten weeks ago) and so far I have had no return of symptoms and continue to improve. Due to many issues (clinical and insurance driven), we decided it was time to stop the IVIG. We were not going to get any more approved by my insurance and we also did NOT want to stop both the IVIG and Ritux at the same time.

    My doctor felt I had gotten the maximum benefit from IVIG and that at this point, my remission was being maintained by the Rituximab alone. But there was no way to confirm this without stopping the IVIG and continuing maintenance infusions of Rituximab. I do not have immune deficiency or active infections so my doctor was not worried about that.
     
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  7. Blake2e

    Blake2e

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    The issue I see is that being on Rituximab is like having secondary immunodeficiency and that could lead to infections and the IVIG at even low dose would be of good help as a preventative. But if youre having insurance and clinical/reactive issues with IVIG then I understand. And theyll be monitoring you pretty close up so if anything does come up they can treat it quick.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    My doctor didn't feel that it created any immune deficiency in someone like me (but I am not supposed to get any vaccines or be exposed to live vaccines). I was never using IVIG as a preventative vs. purely for autoimmunity. I wondered if I might become susceptible to traditional colds, flus, etc, with Ritux (b/c I have not been sick in over 5.5 yrs) but it turned out not to be the case.

    While on Ritux, I was at the hospital daily for 2.5 months while my mom was dying of cancer, during flu season, and was exposed to everything under the sun but never got sick. It was truly bizarre b/c every other family member (six people) got sick, and I was only one who did not, and I was the one who was supposed to be immunocompromised. My doctor said it was b/c I was still so autoimmune that my body was immediately attacking whatever pathogen it encountered but this was both a blessing and a curse. It's not that I want to get sick but it (so far) it appears that I can't get sick.

    I was not reactive to IVIG and the clinical issue was that we believed the Ritux alone was maintaining the remission but we would never know until we stopped the IVIG. We also did NOT want to stop them both at the same time. Additionally, I was having insurance issues that are still unresolved.

    My main doctor is very on top of things and would act immediately if something was wrong re: the infusions (even though he is not local) but I also have another doctor who is local.
     
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  9. Blake2e

    Blake2e

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    Update: Got 1st infusion of Rituxan today. Insurance denied it but manufacturer saved my rear, was about to pay 23k out of pocket. Reacted more to the saline than to the drug itself. Got methyprednisolone IV before infusion plus oral Tylenol. Doing 2 doses of 1000mg 14 days apart. Lets see how this goes!
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    Why would you have been charged $23K and I cannot figure that out?!! Mine has all been covered by insurance (so far) but if that changes in 2019 when I switch insurances, then the grand total for the Ritux plus all infusion costs would be approx $7K if I did it at my doctor's office (plus travel & hotel costs) or $10K if I did it here at my local infusion center. How would they possibly be charging you $23K, I am confused?

    This may not apply to you, but I do not do any extra saline with Ritux and my pre-meds are IV Benadryl, Pepcid, and Tylenol.

    I also started with two infusions that were 14 days apart and then another four infusions that were three months apart (for a total of six). Except my dose was 600 mg (vs. 1000 mg) using that BSA (body surface area) formula.
     
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  11. Blake2e

    Blake2e

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    This was the price I was told if I wanted to do it in my doctor's office. 11.5k for each infusion with 1000mg. Maybe I should do some shopping around and see if other places offer a lower cost, if the need to pay out of pocket arises.



    Do you take the pre-meds as a just in case or do you actually experience some reactions?



    Just to make sure Im understanding. You first got 2 doses 14 days apart then you were getting maintenance infusions every 3 months over the span of 12 months. And I'm presuming youre now on a maintenance of once every 6 months? Please correct me if I'm misunderstanding.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @Blake2e I misunderstood and thought you meant that they were trying to charge you $23K per infusion which would have been insane! But you meant $23K for two infusions of 1000 mg which makes more sense. It is still more than I was quoted for the private pay rate (if my insurance had not covered it) but I am also taking a smaller dose (600 mg) which must lower the cost a little.

    I take the pre-meds "just in case" and did not experience a reaction to it.

    Everything you just said is correct except for the final part which is that we have not yet determined the interval at which I will do the maintenance infusions. The first maintenance infusion will be somewhere between 3-4 months (depending on my B-cell levels, if any symptoms have returned, and b/c I will be losing my secondary insurance at the end of 2018). However, after that (in 2019), if no symptoms return, I am fairly sure we will stretch the interval from somewhere between 4-6 months. We just don't know yet what is going to happen.
     
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  13. Blake2e

    Blake2e

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    When you started Rituxan how soon after your very 1st infusion did you notice any changes in your symptoms?
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    This is such a hard question for me to answer b/c I was doing high-dose IVIG at the same time and the two treatments overlapped (never on the same day or week, but they overlapped in general). I had many improvements from IVIG (prior to starting Rituximab) but then it seemed to plateau.

    I would have to re-read my Rituximab thread to give you a precise answer but it was not until after several infusions (I am guessing somewhere between 3-6 months) that I noticed a significant improvement in muscle strength, breathing strength, and POTS. By May 2018, I no longer needed to use a wheelchair and was able to walk and drive again (which means that I'd completed four of the six Ritux infusions). The fifth was in May and the sixth was in Aug. And at the end of Aug, I was strong enough to begin Physical Therapy and Rehab Pilates and my muscles continue to gain strength.
     
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  15. Blake2e

    Blake2e

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    Thanks for answering! I'm trying to figure out possible reasons why I feel no difference yet. If I reacted to it (even if it wasnt readily apparent to me) then there is a good chance my body just killed the drug before it could work. Another possibility would be the life span of plasma cells that last for days to months. Nerves take a while to heal which might explain why it took 3-6 months before improvements started to happen so Id wager the drug itself started to take effect after about a month. *Scratches head* I guess not much I can do but wait for something to happen. And if Rituxan proves not to be the treatment for me, I'll go and try other things.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    What do you mean that there is a good chance that your body just killed the drug before it could work? I'm not sure if I understood that part?

    How long has it been since you had the initial two infusions (Day 0 and Day 14)? I want to clarify and explain more re: my situation from prior discussions w/my main doctor. He said that I was in a unique situation in that I had done a full year of IVIG prior to starting Rituximab so my autoantibodies were already at a very low level (vs. someone with autoimmune disease who did Ritux without having done the full year of IVIG first).

    In the (hypothetical) latter case, Rituximab would kill the B-cells but would not destroy the fully grown autoantibodies (like what had happened to me with IVIG). So those fully-grown autoantibodies would have to die on their own which would take a lot longer. Versus for me, once the Ritux killed the B-cells (so no new autoantibodies could be created) plus the fully-grown autoantibodies were already as low as humanly possible from the year of IVIG, I was in a situation where I would respond quicker to Ritux (if indeed I was to be a responder).

    My main doctor thought I would probably respond by three months, versus if I had not already done the IVIG, it would have taken much longer (maybe 6-9 months or even a year). I could definitely feel the benefit early on, but would have to go back through my Ritux thread to tell you the exact timeline. I am guessing (from memory) that it was somewhere between 3-6 mos. But it was not until about nine mos that I was able to walk without wheelchair and drive my car, and not until a full year that I was able to start doing physical therapy and pilates. And now (literally for the first time since this illness began in 2013), I can feel my muscles and breathing getting stronger vs. weaker with each passing day.
     
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  17. Blake2e

    Blake2e

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    I've noticed that when I react to a drug the drug also becomes inactive. For example, once I develop an allergy to an antibiotic no matter how much I take of it for however long it will have no effect on me and after testing again for said infection it will still be there unchanged. I've noticed this with many of the drugs Ive tried. Thats also why Xolair doesnt work for me anymore. IgE destroys whatever enters my body.


    I've only done a single Rituxan infusion, next one is in 1.5 wks.

    Thank you for the explanation. So it can take quite a while before significant improvement can be felt. Have to wait out the plasma cell life span. Before my next infusion Im going to get my B cells checked to make sure Rituxan is actually working in my body. Though I suspect it is, dont feel any benefit yet but my immune system does seem weakened more than usual.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    Are you referring mostly to meds in which you have had either an IgE or Mast Cell mediated allergic reaction? Did you have an allergic reaction to the Rituximab (sorry if you shared this and I missed it or am not remembering). Do you have MCAS?

    There is no possible way that you would feel the benefit of Rituximab from one single infusion. You have not even had the second half of the loading dose (Day 14). I am not sure if it is different in cancer cases but in autoimmunity, I have never heard of anyone experiencing a benefit that quickly. It is way too early to know if you are a responder.

    My doctor said that he was almost certain that my B cells would be at zero from the first infusion alone (Day Zero) but regardless, I would still do the second infusion on schedule (Day 14). I know we ran the Lymphocyte Subset Panel to confirm that my B cells were at zero (and they were) but I cannot remember without going through my records if we ran it after the first infusion or waited until both were done.

    Also, there are sort of two parts to Rituximab. If your B cells are at zero, then it means that it did indeed do it's job and it worked. However, that does not mean that you will be a responder (which takes longer to determine). However, if you did the first two infusions and your B cells were NOT at zero, then it means that it actually did not work and something went wrong. I hope that makes sense.

    Also, it does technically make you immunocompromised so when you said that your immune system felt weaker, I was curious what you meant? Were you feeling flu-like symptoms or any signs of traditional illness? For whatever reason (I think b/c I am a freak of nature :eek:), I did not become immunocompromised from Ritux. During the period of my Ritux infusions, I was at the hospital daily for 2.5 months while my mom was dying of cancer. Six members of my family got sick (and I was exposed to all of them plus there was a horrible flu throughout the hospital) yet I was the only family member who did not get sick. It was truly bizarre.

    I have still not had a traditional illness of any kind in almost six years and my doctor's only guess is that I am still skewed very heavily toward autoimmunity. However, I have followed the instructions of Ritux including not being closely exposed to anyone who has had a "live vaccine" and I have of course avoided all vaccines myself.

    Edited to add: Blake, I just re-read this thread and had forgotten that you have primary immunodeficiency (which I do not have). That makes your situation very different than mine and I am wondering if you might need extra precautions? Do you also have MCAS?
     
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  19. Blake2e

    Blake2e

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    I do have MCAS. I'm saying once I develop an allergy to something that drug or whatever will not work for me. Extreme example: If I do a line of coke once I'll get the high. Then with each subsequent use it will work less and less until the point it will have no physiological effect on me aside from triggering an allergic reaction mediated by IgE.
    I didnt notice any reaction to the Rituxan during infusion, I did react to the saline a little.



    Thats good to hear.



    I was going to ask my doctor his thoughts on checking B cells/CD20 right before I do my next infusion. I would really like to know if this drug is having an effect on me, not knowing is a little stressful.

    I got a finger infection 2 days after my 1st infusion. Never had that before. Ive been on decently high doses of steroids for the past 5 months and didnt develop any new infections till that. (Finger is slowing getting better with at home treatment, swelling and everything is significantly down now, another day or 2 and should be normal).

    I have MCAS and primary immunodefeciency. I think as long as I'm careful and stay on IVIG I should be fine on Rituxan. I just need some drug to help with my symptoms so I can finally get off high corticosteroids.
     
    Last edited: Oct 25, 2018
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for explaining and that makes sense. I was curious, what reaction did you get to the saline? Do you think it was infused too quickly?

    It definitely cannot hurt to check B cell levels now although it is possible that they are not at zero from the first infusion alone (but they very well might be).

    How strange re: the finger infection although it does say that Ritux can cause skin reactions in the prescribing info. I am wondering if the combination of the high dose steroids with the Ritux caused it? I do not do well with steroids although I have been on a low/moderate dose of Cortef for 3.5 years and currently in the process of tapering off. Which steroid do you take?

    That is tricky having both MCAS and immunodeficiency. Do you have CVID? I would think that the IVIG would be protective (in general) if you have CVID but even more so if you are now doing Ritux. Will you be able to overlap the two for the entire course of treatment? I would also tend to agree w/you that tapering down the steroid would be protective (but of course it has to be done slowly and with your doctor's advice). Is the steroid for MCAS or another autoimmune condition?

    Best wishes and glad your finger is improving.

    Edit: If the steroid is stopping anaphylaxis than of course this is a different story and makes it much more complex.
     
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