Kidney
New Rash
March 17, 2026
in Kidney
Hi all, my Son is the transplant patient and today he came to me and said he needed to see the doc because he has developed a rash that is spreading all over his torso. I have him an appointment for the morning with his PCP and have reached out to his nephrologist but have not heard back. Just wondering if anyone else has ever experienced a rash just out of nowhere. He has never had skin issues or allergies to anything. He is almost 5 years post transplant and is on mycophenolate and belatacept infusion monthly. My concern is EBV possibly.
Thanks for any replies in advance.
Kim
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Transplant Patient
I think seeing the doctor is probably the best bet at figuring out what this is, as a rash could be any number of things. I've had a few rashes throughout my years, for all different reasons.
I'll also add that I did get EBV (no rash with that though), it was caught early through labs and my transplant team was on it. It's completely under control now. You seem to be on it, and focused on getting him seen ASAP which is the best thing you could do
Keep us posted on what it ends up being!
Thank you for the input Ali! I did get him to the PCP and they prescribed a cream that is helping but my motherly instincts also had me thinking that maybe EBV was causing the rash so I asked his nephrologist to order labs and the EBV came back detected. When I emailed his nurse and said "hey, I see that the EBV is detected what does doc think we should do" and the response was to re-test the EBV so he went back to the lab yesterday and now we are waiting. I am a little nervous because my son is 24 and he was released from his transplant team last year and I dont have the same relationship with this nephrologist as I did with his transplant team and I dont know how equipped he is handling the complexity of the post 2nd transplant patient. I am hoping he is knowledgeable but I am nervous nevertheless and I really dont know who to turn to so once again this forum is incredibly valuable more than ever. So if the EBV is detected what did your transplant team do and what do you think I should do? I know that before my son could be listed as ACTIVE on the transplant list for him to get his second transplant that his EBV level had to be non-detected. Other than than I just knew that they checked it every 6 months and kept a close eye on it.
I can also say that my Son just does not seem well overall. Besides the rash, allergy/cold flu like and weightloss. I feel lost without his transplant team and am so grateful for this community.
I just checked his lab results and I am going to share the results with you because I dont know what to compare these numbers to. I will be calling his nephrologist first thing Monday morning and pray that he will know what to do. Otherwise I will just have to take him to his transplant center ER I suppose to get him admitted. I truly appreciate your suggestions and thank you in advance.
Transplant Patient
Once my EBV was detected, I was started on meds for it almost immediately. I had a low level upon detection, but they were obviously worried about it progressing or things like PTLD. They also put me on steroids for a bit (I was on them for maybe 3 months?) From there they just kept watching my labs really frequently. I'm lucky that I responded to treatment insanely well, and within a pretty short time I was back to not showing EBV in my labs. They still monitor it, though, and I have an entire list of symptoms that if any of these show up I have to present to the ER immediately.
This is so frustrating, especially with your son now moving to independent care (I say as someone who was in paediatrics and probably gave my parents a few heart attacks with my unwillingness to take my health seriously). You want the best for him, and you can't force him to do anything. Let us know what his nephrologist says, or if you end up taking him to the ER. I will say those symptoms could be from any number of things, but they also were on my list of things that if I had them I needed to get checked out and it's always better to be safe than sorry.
Thank you so much for sharing your experience with EBV. His nephrologist locally told me this morning to have my Son stop his myfortic and call Shands( which is the transplant hospital) . Since he is not established there as an adult patient we are going to make the 5 hour drive to the ER there and get him admitted that way. I have to say I am quite disappointed in his local nephrologist but am relieved at the same time to get my Son where he needs to be with a team that understands the complexities of the transplant patient. Once again, I am so grateful for you and this community. I will keep you posted.