At this point I am gathering information about Rituximab and have no definite date to change treatments. I am starting monthly IVIGs again tomorrow and will continue to take CellCept. I hope my leg/arm weakness symptoms will improve again. The new Rituximab treatment option was just proposed by my doc on Monday. Concerned about side effects and want to explore Rituximab before jumping into a change.
After an long 8 month search for a diagnosis, I was finally correctly diagnosed on 3-24-2020 .... by a very intelligent floor nurse ... after two months in two hospitals. She told me that she had patients right here at St. Joe's that had all the symptoms that I had. She said I had M.G. She got me tested and got the medications and an IVIG treatment of five days .. so that I have been in remission since Thanksgiving. She won ... after 8 months of countless doctor and hospital visits failed me. I have ACUTE OCULAR MYASTHENIA GRAVIS and GENERALIZED MYASTHENIA GRAVIS. In reference to your vaccine question, my new primary doctor went "googling" and found that the MODERNA COVID shots should be safe for me to take .... as it was a "DEAD VIRUS" ... so it would not affect my compromised immune system ..which is TOAST. I am required to take 2000 mg of CELLCEPT for an immune suppressant daily and other 3500 mg of 14 other meds a day including MESTINON. So Moderna has not given me any bad side effects ... but they don't know if it is really protecting me either.
Hello @rambo77 Welcome to MayoClinicConnect, a place to get and give information. Everyone shares info about their journey with health issues but we don’t give medical advice because we’re not doctors. You've asked a good question that is on so many minds. I put a link to discussions on the vaccines and health issues. I hope you’ll check out the discussions. I have an autoimmune disease and I’m on steroids and I’m getting monthly chemotherapy, but my doctors said I really should get the shot. What have your doctors said? https://connect.mayoclinic.org/group/covid-19/
Thanks for the reply about MG and the covid Vaccine . I have had 3 phifer shots as the doc said and I take Cellcept The way I understand is you get blood work for white and red cells and the white is low compared to normal that is some gauge of your Immune system . That is what my Doctor told me.
Connect
Connect
Like
Helpful
Hug
At this point I am gathering information about Rituximab and have no definite date to change treatments. I am starting monthly IVIGs again tomorrow and will continue to take CellCept. I hope my leg/arm weakness symptoms will improve again. The new Rituximab treatment option was just proposed by my doc on Monday. Concerned about side effects and want to explore Rituximab before jumping into a change.
At this time I am only taking mestinon. I won't have any further treatment plans until after I see Dr. Ruple in Sept.
After an long 8 month search for a diagnosis, I was finally correctly diagnosed on 3-24-2020 .... by a very intelligent floor nurse ... after two months in two hospitals. She told me that she had patients right here at St. Joe's that had all the symptoms that I had. She said I had M.G. She got me tested and got the medications and an IVIG treatment of five days .. so that I have been in remission since Thanksgiving. She won ... after 8 months of countless doctor and hospital visits failed me. I have ACUTE OCULAR MYASTHENIA GRAVIS and GENERALIZED MYASTHENIA GRAVIS. In reference to your vaccine question, my new primary doctor went "googling" and found that the MODERNA COVID shots should be safe for me to take .... as it was a "DEAD VIRUS" ... so it would not affect my compromised immune system ..which is TOAST. I am required to take 2000 mg of CELLCEPT for an immune suppressant daily and other 3500 mg of 14 other meds a day including MESTINON. So Moderna has not given me any bad side effects ... but they don't know if it is really protecting me either.
Thanks for the reply about MG and the covid Vaccine . I have had 3 phifer shots as the doc said and I take Cellcept The way I understand is you get blood work for white and red cells and the white is low compared to normal that is some gauge of your Immune system . That is what my Doctor told me.