I am almost 6 months post kidney transplant. I developed a 24 hr fever on July 30, along with headaches and very large painful mouth sores. I could barely eat or talk. My white blood cell count was low but creatinine was normal. The docs tested for everything including CMV, Epstein Barr, and did swabs on the mouth sores. Everything came back negative. So then they decided to decrease the Mycophenolate by 50% (it was 720mg 2x per day) and within 3 days the mouth sores decreased by 75%. But my white blood cell count is still low, specifically the neutrophils, but I am asymptomatic at this point. The docs decided to completely (but likely temporarily) remove the Mycophenolate, the Septra, and the Lansoprazole to see if this will help my wbc count increase. I am still taking Tacrolimus at 5 mg and Prednisone at 7.5 mg. Unfortunately with these medication changes now I am at an even greater risk of infection.
If anyone has any experience or insight about mouth sores, low wbc and stopping Mycophenolate, I would sincerely appreciate any feedback at all. Thank you.
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Tallyn
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My neutrophils were very, very low back in March - 6-7 months post. First, they removed my daily antibiotic, Bactrim. Then, they removed my anti viral. They placed me, temporarily, on an anti infective which I can’t remember the name. While my neutrophils returned to normal the anti infective caused problems with hemoglobin. I’m currently on 2x weekly bactrim ds and no anti infective. I’m happy to say CBC and Differential are usually very good.
Just my experience as a 11 month kidney transplant patient. 😀
I think by removing Cellcept you are at a significantly less risk of infection. Your WBC and differentials should recover to the normal range. Follow the advice of your doctors. They know what they are doing. Of course be extra viligent with hand washing and masking.
I was neutropenia and leukopenic. This was 6/8 months in. I had a bone marrow biopsy which showed nothing alarming . My WBC worrying low but asymptomatic. I was taken off MMF and it eventually corrected itself. I was on 500 mg twice a day . My new dose is 250 mg twice a day. My WBC before transplant was low. It has returned to above those levels but sometimes dips. I C was given a course of iron too.
As with most things it appears to be a question of time.
Stay in touch with your team. I was immediately sent to haematology at the slightest whiff of concern and felt very safe and well cared for.
The usual rollercoaster that accompanies the transplant drug regime.
Oh yes and they took me off my daily antibios which can cause this too. I was given an inhaled steroid to reduce any potential lung infection such as pneumonia
I had two infections, BK and a UTI. For both, the docs stopped by the CellCept and started Prednisone. Went back on the CellCept after the infection cleared. They also reduced the dose from 750 mg twice a day to 500 mg twice a day. So, they stop the CellCept to let the immune system rev up a little to deal with the infection. Good luck, it takes time to fine time the meds for each person.
Just curious did your wbc went down after flu shot or Pfizer shot. My son’s wbc went down after flu shot in December and again in March after both doses of Pfizer and sated low…his transplant was oct 1. In april we reduced cellcept to 250 twice a day… stopped septra and neutrophils were really low until the last week, when it suddenly jumped up to norma levels we have no clue . We connected it to vaccines… but dr. says that is not reported side effect… so who would know what happens in each body…
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canker sore, low wbc and GI infection 
Got covid - when test turns negative?
Sirolimus - mouth sores!
