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Anyone treated for MGRS? What is your experience with side effects?
Hello. I’m starting treatment tomorrow for MGRS and would love to chat with anyone who is currently in treatment or has completed treatment. Thanks!
For right now, my main question is what are the treatment side-effects? My doc says they are generally mild and well-tolerated …. True?
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@sherego, welcome. I'm tagging fellow MGRS members like @f019521 @tdseid1961 @edna68 @lor333 @like2dance2 who can share more with you. You might also be interested in this related discussion:
- MGRS (monoclonal gammopathy of renal significance): Let's connect https://connect.mayoclinic.org/discussion/mgrs-diagnosis/
@sherego, what treatment are you on? How did it go today?
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2 ReactionsThank you!
I am on a 2-year plan of DARA VCD. My first treatment went very well! About two hours after the treatment I had side-effects similar to having a cold: runny nose, sneezing, coughing, itchy and watery eyes. But that only lasted a few hours and today I feel fine! But I must say, I have felt fine thoughout the entire diagnostic process. I have had literally no known-to-me symptoms -- irregularities were caught in a routine blood test, which led to many more blood tests, and urine tests and an ultrasound and a doppler image and a biopsy and a bone marrow test . . . and eventually to the MGRS diagnosis.
I have an unusual situation because I am an American, but I have lived in France for the past 5 years. Is DARA VCD a common treatment in the US?
And yes, I completely trust my medical team here! The city we live in -- Montpellier -- is renowned for its excellent medical school. All of my primary physicians speak English -- which is good because I don't (yet) speak medical French! I have found the care here to be very quick and professional. Of course, I don't like the diagnosis, but I am feeling optimistic about the treatment and outcome.
Hi. I was diagnosed with Al Amyloidosis that is affecting my kidneys. They started me on the Andromedia study treatment. DCyborVD. In the beginning I received dexamethezone, Chemo, velcade, and darzalex Fastpro, weekly. My M spike and Kappa have improved, but are not quite normal. My kidneys are slow to respond gfr 18. They say they could still respond. I am praying. Just so you know the treatment is not bad. I was fatiqued, however. Best of luck to you. Hope everything goes back to normal.
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1 ReactionMy husband has been on that treatment for 3 months. He has Lymphoplasmacytic Lymphoma (very rare) that acts more like myeloma with high light chains. He seems sensitive to meds. so he has been up and down with the side effects. Initially the biggest side effect is the trouble sleeping with the high dose dexamethasone and then there can be extreme fatigue after that day or so of high energy. His doc lowered his dex dose so he is not experiencing as much of that. He has found that how he feels depends on the day of the week and how the drugs are working, He has a job where he stands most of the day so the day after the Dex is great for that. Good luck!
Hello --
And thank you! I am on a DARA VCD regimen -- does that sound familiar?