Kidney
Envarsus?????
October 22, 2024
in Kidney
Has anyone tried Envarsus to reduce Tacro induced Tremors and if so what were the results?????
Thank you🙏
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I haven’t, and this is a bit off topic, but I had terrible tremors and other side effects from Tacro. Almost all of my hair fell out, developed CMV, I felt terrible, the Tacro was damaging my new kidney as well as a number of other issues. A friend mention Nulojix infusions, and I was able to switch. I was surprised my transplant center never mention it - but just kept trying to treat my symptoms from Tacro. It was life changing. Every side effect is gone a year later. It’s not for everyone, but it may help some. 💚
Hi Stacey,
Thank you so much for your reply. Since my son had his second transplant 3.5 years ago he has had terrible tremors, and now depression, weight loss and possibly more that I am not aware of because he does not talk about it. We are working on that aspect too but I am trying to help him any way I can. His transplant team told me that Envarsus was an option but have not mentioned the infusion. His new local doctor has never heard of Envarsus. I will ask about the infusion as well because I really feel that his quality of life will improve if we make a change from the Tacro.
Thank you again🙏
Also, are you taking prednisone too? He did not take prednisone for the first 15 years after his first transplant and now after the second he is on 10mg of prednisone daily.
@Hummingbird I was temporary using Envarsus for a week recently, until my Balatecept Infusion got setup. I had a few side effects from Envarsus as well, such as congestion, headaches, high blood pressure. I never experienced tremors when I took Tacrolimus.
Ok, thank you for sharing your experience. I am planning to talk to his doctor about the Balatecept too. Wishing you all the best!
Yes, I have the monthly infusion, 5 mg prednisone and Cellcept daily. I’m so sorry to hear your son is having such terrible issues. But that medicine was horrible for me. I hope he gets to change to something else.
Thank you again for sharing your story. His doctor has approved the use of the infusion and wow if I can get them to eventually cut his prednisone down to 5mg that would be great. He currently takes 10mg of prednisone and Mycophenolate. He was on Cellcept as a baby but he did not tolerate it well so then he was on Sirolimus and Tacro. After the 2nd transplant it has been the tacro, prednisone, and mycophenolate. I will let you know how it goes. I am so grateful for this support group.❤️
That’s wonderful to hear! I hope this is a game changer for him and can help him with those awful side effects. Have a wonderful day. 💚
Transplant Patient
I'm not on Envarsus, but I do love reading all of your insights! I'm so glad we have options, and the ability to find the best medication for us.
Thank you Ali, I am so glad we have this group with so many brilliant and beautiful people willing to share experiences and help each other. Truly a blessing, and just praying my son will join in when he is ready.
Transplant Patient
@Hummingbird if your son is more comfortable with 1:1 connection versus the forum that can be large and overwhelming, our buddies are always available for direct messaging. Or he can join a support group too if that’s more his thing. I lead those, and I’m always available to answer questions. They are open to anyone within the transplant community, an hour over zoom.
Hi Ali, I think he would be. He has finally said he would go to counseling and I have his first appointment scheduled next Thurs but will also share this information with him. He lives independently about 15 min away from me and he is on discord most of the time unless he is at work so I just need to be able to get him to open a new tab and join the group. Direct messaging via the computer is how I have to communicate with him often because he will not answer the phone or text reliably.
Transplant Patient
I totally get how 1:1 is more comfortable - I am like that too. Thank you for sharing so much about Envarsus and Bela! I am currently evaluating whether I will move to Envarsus - but I am not able to get bela due to my pancreas transplant
Thank you for doing all that you do Karin and for creating this amazing space and offering so much to all of us. Words really don’t express the gratitude. My Son went to counseling for the first time today and to my surprise he scheduled himself again for next week. I planted the seed again with him about connecting here so maybe after a few layers have started to peel off then maybe he will be ready. Blessings to you 🙏