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I was just approved for Rituximab!!!

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

  1. Gingergrrl

    Gingergrrl Senior Member

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    Thanks, Leela, and also for all of the great info re: the different types of ports. My goal is to do six more months of IVIG plus the two Ritux infusions (and possible maintenance doses, but that is to be determined later) without having to get a port. I don't believe that I need one and my veins are still okay and hoping that remains the case. But if that changes... you may be hearing from me again :D.

    Thank you @Binkie4 and this will be my official hashtag (even though I have never used Twitter in my life and don't even know how)!

    Thanks @PatJ for all of your support and if I am able to walk/drive again after Ritux, doing volunteer work is at the top of my list.

    Thank you and I wish I believed it would be that quick or easy but I am realistic and know that won't be the case. I think it takes about six months to start to feel the benefits (if you are a responder) but I have heard of some cases where people started to benefit after 3-4 months. I am guardedly optimistic.

    Am fairly certain now that they won't take away the IVIG and was able to schedule next IVIG cycle for next week. I honestly do not know what was the final factor that made my insurance reverse the denial and we have been working on this since March! Once it passes a certain point in the appeal process, the patient is no longer involved and it is between the patient's doctor and the doctor at the insurance who do a "Peer to Peer" review. I believe by the grace of God that we got a "Peer" doctor at my insurance who was sympathetic to my case.

    As far as diagnoses/autoantibodies, I have Autoimmune POTS & Dysautonomia, MCAS (mast cell disease), Hashimoto's, and a collection of 11 autoantibodies causing muscle & breathing weakness and overall autoimmune chaos. I have the calcium channel autoantibody that goes w/LEMS (which causes muscle & breathing weakness), GAD65 (which in my case links to dysautonomia and some symptoms of SPS prior to IVIG), the two Hashi's (anti-thyroid Abs), and 7 of the 9 Cell Trend Auto-Abs which include beta-adrenergic (link to POTS) and anti-muscarinic/cholinergic (link to muscle weakness). I also have positive ANA titer of 1:160, speckled pattern.

    I believe we explained how high dose IVIG put my MCAS into remission for entire ten months of treatment and greatly improved my muscle strength, breathing, stamina, etc, but it's temporary vs. Ritux could correct this and eliminate the need for IVIG if the new B Cells grow back healthy without all these damn autoantibodies. Having such a good response to high dose IVIG increases the chance I could be a responder to Ritux. I think we focused on my incredible symptom improvement from IVIG and that w/Ritux I could potentially get to the point of walking without wheelchair which I have not done since Oct 2014. My greatest hope in sharing all of this is that it helps someone else down the line.
     
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  2. dannybex

    dannybex Senior Member

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    @Gingergrrl, of course I wish you the best, and don't want to be a Danny-downer, but I hope you'll keep in mind that it was Rituximab that Whitney Dafoe said made him a lot worse.

    The title of his post: "swollen throat, bad sleep, CFS wrse aftr rtxn"

    http://forums.phoenixrising.me/index.php?threads/swollen-throat-bad-sleep-cfs-wrse-aftr-rtxn.25183/

    "I can't talk. Can't type/text enough to communicate. Haven't had a conversation with someone in 8 months..."

    That would mean 1 month after starting Rituximab, he was no longer able to talk w/others.

    He used to take part in a political thread back in late 2012, where his very articulate posts were several paragraphs long. He started Ritux in January 2013. Nine months later, he needed his caregiver to write this for him:

    http://forums.phoenixrising.me/inde...pressions-for-dental-appliance-at-home.26639/

    Of course there may have been other factors involved, and just because he had a bad reaction doesn't mean you will. Just thought it's worth a word of caution.

    Good luck. :)
     
    Last edited: Jul 26, 2017
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  3. Gingergrrl

    Gingergrrl Senior Member

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    Thanks, Danny, and I have read Whitney's story and Olaf Bodden's and others who worsened after Ritux and was so saddened to hear everything that they went through. I know that it can cause PML, which is rare but fatal, and I know that I am a potential anaphylaxis risk.

    But for whatever reason, after analyzing all of the information, talking to people with significant recovery from Ritux in my autoantibody groups, and seeing the improvement I have had from IVIG (after many people told me that IVIG was too dangerous as well), that I feel I am making the right choice. I realize that it could make me worse, and that it could even kill me, but am willing take the risk for the chance to have my life back.

    I know many disagree with my choice and I am okay with that. It is not for everyone and prior to having rock solid confirmation of these autoantibodies, I would have made a different choice, too. But this is my one life and if there is a chance to get it back (no matter how small) after four years of being sick I have to go for it.

    Edit: Both of my doctors also feel this is the right choice for me and if they didn't, I also would not be proceeding in this direction.
     
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  4. Kenny Banya

    Kenny Banya Senior Member

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    What about the fact you will need more than 2 doses?
    As in the evidence that suggest you need 5 doses over 12 months?
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Sorry, I should clarify that we only asked for the initial two starter doses for now but if I do well with them and show improvement, then we can request the maintenance doses over the course of the coming year (while monitoring that B-cells remain depleted). We just could not ask for more than the first two doses upfront as this would have been denied for sure.
     
    Last edited: Jun 11, 2017
  6. NelliePledge

    NelliePledge plodder

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    all the best I hope it works
     
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  7. Sancar

    Sancar Sick of being sick ~ and so is my walking buddy

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    :redface:@Gingergrrl ~ Soooooo glad you got the :thumbsup:! I concur with @Jesse2233 that the IVIG / RTX combo will give you a GREAT advantage. More so over say RTX on its own.

    As you stated the IVIG has benefited you greatly. Taking that away while starting the RTX could have potentially set you back. The immune boosting power of IVIG ~ I personally do not believe can be understated.

    Go girl go!!!!!
     
    Last edited: Jun 11, 2017
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  8. Gingergrrl

    Gingergrrl Senior Member

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    Thank you so much @Sancar for your ongoing support and encouragement. I agree that the IVIG and Rituximab in combination will (potentially) be very beneficial and so grateful to have the opportunity to try it and report back to you guys. My next 3-day IVIG cycle is confirmed for tomorrow (Tu-Th) and then I have phone consult w/my doctor on Mon and appt w/my other doc next Fri. So if we can coordinate everything, I could potentially have the first dose of Ritux the week of 6/26 or first week of July.
     
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  9. Strawberry

    Strawberry Senior Member

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    Best news I have heard in a while! Congratulations! Many prayers that this goes exactly as planned, and in 6 months you are much improved!
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    Thank you so much for your prayers @Strawberry and I am trying to maintain a hopeful attitude that I will be a responder and nothing will go wrong!
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    I just got the Rituximab Auth sent to me via the Patient Portal from my doctor and when I got home from IVIG, I also got the original copy of the Auth sent to me in the mail from my insurance! So, now I have something in writing and can bring it to the Infusion Center for my 3rd day of IVIG tomorrow and will also e-mail it to my local doctor (who I will be seeing for an appt next Fri). Am so happy the pieces are all coming together :).
     
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  12. Silencio

    Silencio Senior Member

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    Hi @Gingergrrl, excited to hear how this goes for you. Curious, what sort of doctor ran all the antibody tests for you.. was it a rheumatologist?
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    @Silencio thank you and it was actually several different doctors who helped me to piece this together. In Oct 2013, I was diagnosed with Hashimotos at first appt w/Endo (who is still my doc today) and have the two Hashi's autoantibodies (but ANA titer was still negative at that time).

    Fast forward to 2016 (when I was significantly more ill) and I saw a Neuro for a dysautonomia consult & testing. He was ultimately not able to help me but he ran some very helpful bloodwork including several panels sent to Mayo (PAVAL, GAD65, MuSK, etc) which is how I learned I had some other more obscure autoantibodies and at this point my ANA was positive 1:160 speckled pattern.

    Then I decided to do the Cell Trend tests (from Germany) in conjunction w/my main doctor and learned I was positive for 7 of the 9 autoantibodies so we actually did the test a second time (several months later) and my results remained the same (in case it was a fluke). This confirmed to my doc that I have the autoimmune form of POTS and my system was in a general state of autoimmune chaos.

    Hope this helps!
     
  14. taniaaust1

    taniaaust1

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    that's such wonderful news, Im happy for u. You must have such a good doctor, best luck with the new treatment.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    Thank you so much, Tania, and I will keep updating this thread throughout the process. Right now am aiming for first Ritux infusion for July 6th but this could change. I do have an amazing doctor and am incredibly lucky.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    Just wanted to update this thread that I am on the way to my appt w/my MCAS doctor and if all goes well, we will do a conference call w/my main doc re: Ritux. If my MCAS doc is in agreement with the plan and writes the order, then I can schedule my first Ritux Infusion at his infusion center (where I do my IVIG) for July!

    The week I had wanted is now unlikely b/c center is closed two days for July 4th holiday and they had to reschedule all their cancer patients so most likely will now be mid July but that is okay. Am hoping this final piece of the puzzle is done today so I can schedule the Ritux!
     
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  17. Kenny Banya

    Kenny Banya Senior Member

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    Any news?
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    Sorry @Kenny Banya and I'd been intending to update this thread but kept getting distracted by other things! I scheduled my two infusions of Ritux for 7/18 and 8/1 at the same infusion center where I have done IVIG for the past year. I'd wanted to schedule the first infusion for this week but b/c of the July 4th holiday they are closed for two days and it did not work. In addition, my doctor had not faxed them the prescription and they could not schedule me without it (vs. they have a standing order from him that I can schedule IVIG every 3 wks through Dec 2017).

    So I realized that there was no point in missing my IVIG just b/c they did not have the Ritux order yet (and appts were going fast for this week b/c of the two-day holiday closure) so I was able to schedule my IVIG for this Th-Sat. My doc did end up sending them the prescription so I was able to schedule the first Ritux for 7/18. I am extremely lucky and blessed that my favorite nurse (who will be doing my Ritux) has just gone from 8-hour shifts to 10-hour shifts (a new policy that works in my favor). This gives me more time so the Ritux infusion can take longer. My doctor wrote that it cannot be infused faster than eight hours so with her working 10-hour shifts, it gives enough time to insert the IV, do IV Benadryl and other pre-meds, etc. So I chose dates that she is working the 10-hour shift and if her schedule should change, then I will be changing my appt. But at present, these are my two infusion dates (7/18 and 8/1). I am excited, but also a little scared! :nervous:
     
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  19. Skycloud

    Skycloud Senior Member

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    :hug: I really hope this works for you! :)
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @Skycloud and I just finished my latest 3-day cycle of IVIG so my next infusion on 7/18 will be the Rituximab! The nurse who will be doing my Ritux (who is my favorite nurse at the infusion center) already spoke with the pharmacist who will be preparing the Ritux re: some questions from the order (but we have ten days to clarify it with my mast cell doctor and I'm certain that will be enough time and it will not delay the infusion). I will use this thread to post updates once I do the two Ritux infusions so nothing will be happening for the next ten days.
     

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