I have a kidney transplant since years. Currently taking 1mg Prograf twice a day, 0.5mg Cellcept twice a day and 5mg 3/4 tablet Prednisolone once a day.
Before yesterday my whole body ached and I had temperature 38C. I took it down with Parcetamol and called ambulance. They've checked everything, said it's all good, but you have covid.
I've called my maintenance nephrologist, and she said to make: CBC, C-Reactive Protein, Urine Analysis, D-Dimer, Creatinine, Urea, CMV and Covid Antibodies A, M, G. She also said I should stop Cellcept temporarily.
Now I feel a bit better, temp is 36C, but my throat still aches and body feels weak. Only partial tests ready up now, eosinophils are at 0.
My two main concerns - do I need some antivirals? And I'm really terrified of stopping Cellcept.
What is your experience?
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TheLittleSquirrel
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I would give IV remdesivir immediately. It needs to be taken within 7 days of infection to work the best. Why take a chance? It’s 73% effective roughly. We cannot have Paxlovid (91% effective) it will make tacro or cyclosporine levels deadly high.
Please don’t wait to see if you get worse. People can decompensate very rapidly at day 5.
Please do not take your maintenance nephrologist’s opinion. Call your transplant center immediately.
My own nephrologist would never mess with a transplant med like that, that’s just how he’s trained. He will change doses, but that’s it. He wouldn’t start or stop any transplant drug. That’s just how he approches it.
I ended up skipping my evening dosage for 3 days. It brought down my Prograf from 8.6 to 5.3, and I seem to overcome the disease. Will do additional test in a week or so.
Actually, I've consulted few different doctors, since I don't have my transplant team around (different country). One said cancel Cellcept for a week. Another said cancel Cellcept for a week, but double Prednisolone meanwhile, and in 3 days start taking Cellcept half dosage again, and in 3 more days get back to full Cellcept dosage and reduce Prednisolone back. But I kinda doubted them all, so I skipped few evening dosages instead of cancelling it completely.
One thing one of them prescribe for me is blood thinner, but I kinda hesitated of taking it because of possible hemorrhages. I felt it's more like a hospital medication, but they wouldn't admit me because of not being "in bad enough condition".
I have a nephrologist, who supposed to know how to deal with post-transplant patients. But sometimes I feel her solutions are a little bit over the top, like excessive or unnecessary. I know she means well, but I still prefer collecting number of opinions before proceeding with any change. For example, most don't advise blood thinners, but she does. Even without covid. But my blood works don't seem to indicate the need.
I would take an antiviral (Remdesivir), which will block the virus from replicating. I also would want experts in your transplant center, rather than your general nephrologist, overseeing your treatment.
Ask your transplant center what they recommend. Any medical advice given here is based on a single patient's perspective. If patients know more than the doctors we would not be going to see doctors at all. Only follow the recommendation of clinical professionals who know you, your medical history, and your lab results.
I was on the exact regime as you. Around 4 months after transplant they stopped the cellcept because of the BK Virus . I have never gone back on the cell pet and it’s 4 years later. My kidney is fine.
Okay!! I have never heard of stopping your transplant medications, due to COVID. I also did not know that they had another alternative of Paxlovid, that is definitely good to know. I have had Covid 3 times already, the first 2 I was able to get the IV therapy. The last time I was not able to get anything, I just had to treat my symptoms, which was not too bad.
When I had covid my transplant team directly told me to stop Cellcept to allow my immune system to rev up and fight off the infection but only for one week and no more than that. That helped me feel better within about 4 days. When in doubt always ask the transplant team.
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