KK1954

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  • KK1954
    February 18, 2016 at 11:05 pm

    Wow! 500K…eeek!

    I have already had Melanoma, actually recently (one year ago), so I think that is why they are reluctant to give me Rituxan right now. My IVIG infusion is scheduled for the 19th, and we will see if I get the bleeding kidneys again, etc.

    I SO wish I could continue without any treatments, but my quality of life has greatly gone downhill without them. 🙁

    How did the Rituxan work for you? Did it resolve your CIDP and did you have side effects?

    KK1954
    February 18, 2016 at 8:05 pm

    Hi Jim,

    Been a while and I was wondering if you got your stem cell transplant treatment and how it went. Did it work?
    I have not had ANY treatment for almost 2 years now, but will be trying IVIG again in a couple weeks. I am very nervous because I had a minor stroke last year. We were going to do Rituxan, but they nixed that after a Melanoma diagnosis. Guess they don’t want to do anything that would supress my immune system. 🙁
    So only option ( since I have gotten much weaker without TX) is IVIG.
    Karen

    KK1954
    February 7, 2015 at 3:49 pm

    Thanks again Jim! I will look over the links you posted and keep working towards getting approval.

    KK1954
    February 7, 2015 at 1:01 am

    Thanks, Jim-LA. I should have said that I was referred to an Oncologist at OHSU and he is the one I am trying to get a definitive anser from about insurance coverage. All my docs agree that I should start on Rituxan, but I won’t until they can give me a guarantee I won’t have to pay. Guess I will have to keep bugging them….was hoping someone on this forum could give a tip as to how to get it approved. I will talk to them about medical necessity, as that is the case with me. I can not have IVIG…I did that for over 15 years, and it finally started causing bad problems with my kidneys. Blood in urine for three weeks after treatment. Not good. Thanks again for your help….I’ll keep at it!

    KK1954
    February 6, 2015 at 9:48 pm

    I am now approaching two years since my last IVIG treatment. Still waiting for OHSU to figure out insurance to pay for Rituxan. So far, no luck with my Medicare and supplimental. I am getting worse by the day….any suggestions on getting insurance approval? My doctors say I can not have IVIG ever again. Thanks – Karen

    KK1954
    October 27, 2013 at 6:00 pm

    Thanks Rick,

    IT is interesting to hear the differances in treatment plans. I am going to be getting mine at OHSU, here in Oregon. The Oncologist claims ahat I will probably only have to have two infusions, 15 days apart, and then they will check my “b” cells. IOf they are surpressed enough, then that is all. He also said that then they would just do blood tests and keep an eye on those cells, and it could be a year or more before I would need Rituxan again. He has one patient that hasn’t had another infusion for 18 months! I sure hope he is right….! I can’t hafve IVIG at all, so have not had any treatment since June now.
    My Oncologist didn’t say anythign at all about Decadron either. Hoping they don’t have to use that as I have had some bad reactions to it in the past.
    Thanks again for sharing your journey with me. Maybe we can compare notes on here as we both go forward?
    Karen

    KK1954
    October 26, 2013 at 5:34 pm

    Hi Rick,

    I saw your post and was wondering if I could pick your brain a little? Because I can’t tolerate IVIG anymore, my doctors have said I need to go on Rituxan too. I have not started yet and am a little scared about the side effects, etc. Can you tell me what your experience was like? Are you sick after getting it? Hasve you noticed any improvement at all? Any worries about long term side effects? ANYTHING you can share with me would be appreciated.

    Thanks, Karen
    PS- I have been diagnosed with CIDP or MMN (they can’t seem to decide which) over 15 years ago.

    KK1954
    August 26, 2013 at 8:43 pm

    Thanks Bill,

    I will have to check with my Nephrologist, but I seem to remember that she said all my levels and kidney function were fine. That’s why they can’t seem to figure out what is causing the kidneys to bleed. I know the biggest worry is that IVIG CAN cause complete kidney failure without notice, so they are thinking mine are telling me to go easy…LOL.

    Thanks for the info..good luck to you!

    Karen

    KK1954
    August 26, 2013 at 7:55 pm

    Bill,

    Do you mind me asking what kind of kidney problems you have been having? Are you getting Hematuria from the IVIG like me? Is the treatment proticol they have you on now working for your problems? Any info would be appreciated!

    Karen

    KK1954
    August 26, 2013 at 7:53 pm

    Hi Jim,

    Thanks for the info! I have already talked to Dr. Schilke and he was helpful, but had never heard of this type of a reaction. He suggested I talk to the medical board at the Foundation and I called, but they have not returned my call.

    I was aware of the clinical trial, and checked into it, but had no need to change treatments at that time. I believe it is now over, darn it! I have been treated at OHSU for the last 15 years and when first diagnosed, they had a neurologist on staff that specialized in CIDP. She left after a couple years, and since then I have just been followed by the MS clinic. It was my neuro there that suggested that I explore other parts of the country for a specialist that can see me and possibly find a treatment other than IVIG, since she didn;t know of any other options.

    I guess I will keep searching….and hoping someone can give me a recomendation as to who I can see that is knowledgable!
    Karen

    KK1954
    August 17, 2013 at 1:34 am

    Thank you for your response. I live in Oregon (the Portland area) and have been treated at Oregon Health & Sciences University. Plasmapheresis has not been offered and I have Medicare, so would not qualify for the clinical trail. =(