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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.
     
  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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