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.
Can't speak to the qualifications of, or evaluate a medical doctor's orders because 1) I do not have a MD, 2) I do not know anyone else's medical history or current health state. However, it is typically not advisable to go around seeking multiple second opinions on maintenance treatment strategy. Also, other patient's treatements are almost always not applicable to you or I.
Most of the time, choice of a prescription is based not only on the condition intended to treat, but also how that treatment works in the context of patient's other meds, medical history (both long and short term). Blood work results largely reflect the medical state of the blood draw date, not of one's past history or progression of past conditions.
Because of the complexity and how polypharmacology can have unexpected adverse effects, it can be life saving to have a doctor who knows you long term. It is important to trust the doctor you have, and know that there are so many important scientific details that patients simply do not have knowledge of. If you do not feel confident about your current doctor, maybe find another doctor you like better so you can trust and communicate better with the new doctor. This way, you will have the best care and enjoy long term good health.
You are right, the complexity behind the condition and its treatment is immense. That's why I cannot trust in one doctor's opinion, unless I feel it's right. After all, if I lose my kidney or something happens to me because of excessive treatment, doctor will proceed with her life. Me? Not so much. So it's up to me to weight everything, and double or triple-check things. I am trying to find a doctor whom I can totally trust though, but that's not easy... 😔
Additionally, most doctors I face, they get their training in the walls of university. I read NCBI articles about conditions or drug interactions, dated as far as 20 years ago (I read more recent stuff too), and usually, doctors never heard of those articles, because they never cared enough to read them. It's hard to trust a doctor if he is not keeping himself up to date with latest advancements in his fields or if he's not walking you thru exact reasons for each medication adjustment, and just says "do it".
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.
Yes I would not take any chances when it comes to COVID and your health of your Kidney. I would also get the advice of your Transplant Team, not saying that your local Nephrologist is not competent, but I would definitely go by what your team says. I run everything threw my Transplant Team ( I mean everything)! Good Luck!
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