• Diana L Burgess

    Member
    September 21, 2022 at 7:57 pm

    When I first started on chemotherapy. I had little side effects. The only medicine that I couldn’t take is imuran. It made me very sick. So my Dr put me on iv infusions which I don’t have any problems at this time. I do have chemo curls which I didn’t have before.

  • kenneth j. bialkowski

    Member
    September 22, 2022 at 12:22 pm

    I had a course of Rituximab 4 years ago and have not had a crisis or hospitalization since. I have since remained stable with low dose Prednisone and weekly IVIG.

  • Deb Couraud

    Member
    September 30, 2022 at 10:20 pm

    I am on Rituxan every 4 months IV now with low dose Prednisone, Mestinon 60mg 3 x’s a day, and IVIG every 3 weeks by Infusion RN. Imuran caused me so many side effects I was miserable and no quality life. I had to get off of it. I was in the hospital 3-4 times a year until Rituxan. I am grateful to feel better since Rituxan the best I have been in 5 years. I have had Plasma exchange had relief of symptoms but it was not lasting more than 4-6 weeks. There are other chemo drugs in use to treat gMG and new ones on the horizon. My neurologist is awesome and has 100% of my trust. I am grateful to be diagnosed and have a treatment team that listens and are aware of all treatment modalities currently used and under studies.

    I am so grateful of Methodist Hospital Neurology in Houston. I went to 3  hospitals with Neurology before I was able to get a diagnosis. It should have been an easy assumption with Stage II Thymoma and Sternotomy for the cancer to remove it. It wasn’t.

  • Deb Couraud

    Member
    September 30, 2022 at 10:20 pm

    I am on Rituxan every 4 months IV now with low dose Prednisone, Mestinon 60mg 3 x’s a day, and IVIG every 3 weeks by Infusion RN. Imuran caused me so many side effects I was miserable and no quality life. I had to get off of it. I was in the hospital 3-4 times a year until Rituxan. I am grateful to feel better since Rituxan the best I have been in 5 years. I have had Plasma exchange had relief of symptoms but it was not lasting more than 4-6 weeks. There are other chemo drugs in use to treat gMG and new ones on the horizon. My neurologist is awesome and has 100% of my trust. I am grateful to be diagnosed and have a treatment team that listens and are aware of all treatment modalities currently used and under studies.

    I am so grateful of Methodist Hospital Neurology in Houston. I went to 3  hospitals with Neurology before I was able to get a diagnosis. It should have been an easy assumption with Stage II Thymoma and Sternotomy for the cancer to remove it. It wasn’t.

  • Deb Couraud

    Member
    September 30, 2022 at 10:20 pm

    I am on Rituxan every 4 months IV now with low dose Prednisone, Mestinon 60mg 3 x’s a day, and IVIG every 3 weeks by Infusion RN. Imuran caused me so many side effects I was miserable and no quality life. I had to get off of it. I was in the hospital 3-4 times a year until Rituxan. I am grateful to feel better since Rituxan the best I have been in 5 years. I have had Plasma exchange had relief of symptoms but it was not lasting more than 4-6 weeks. There are other chemo drugs in use to treat gMG and new ones on the horizon. My neurologist is awesome and has 100% of my trust. I am grateful to be diagnosed and have a treatment team that listens and are aware of all treatment modalities currently used and under studies.

    I am so grateful of Methodist Hospital Neurology in Houston. I went to 3  hospitals with Neurology before I was able to get a diagnosis. It should have been an easy assumption with Stage II Thymoma and Sternotomy for the cancer to remove it. It wasn’t.

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