Good news! I found the missing email. It had been filed under Important. Who knew there was such a folder. The reader asked how high my numbers had been, so I've been tracking them down through my blog pages. Here's what I found along with creatinine levels:
The BK was discovered after elevation of creatinine to 2.6 was noted during a normal visit to the clinic. A kidney biopsy was performed to determine whether the cause was rejection or BK Virus. BK was confirmed with 497,000 copies of the virus found in the serum test.
Dr. M reduced dosage of both Prograf and Myfortic and prescribed a round of Ciproflaxcin. After two weeks serum test copies were reduced to 73,000. Creatinine was slightly elevated, blood pressure was becoming more difficult to control.
Two weeks after the Ciproflaxcin, the serum test revealed an increase to 156,000 copies. Moreover, Creatinine was continuing to rise (3.1) indicating the inflammation was doing damage to the kidney.
Dr. M reduced the Prograf again and discontinued the Myfortic. Two weeks later, the serum test revealed reduction to 45,000 copies, but two weeks after that it was back up to 54,000. Creatinine continued to slowly elevate.
Then he began a series of treatments with Cidofovir, an antiviral that had been developed to fight aids. Its primary use was to treat retinal inflammations in HIV patients. Its primary side effect is its toxicity to kidneys. He also administered an infusion of IVIG (intravenous immuno-globulin) which produced fever and convulsions (I reacted horribly to the drug.)
Serum tests revealed a reduction in copies, first to 3150, then to 650. However creatine was up to 5.6. We don't know whether it was the toxicity of the cidofovir or the reaction to the IVIG that caused the damage, or the continued damage from the BK Virus. Dr M then prescribed treatment with leflunamide, an antiviral whose primary use is to treat rheumatoid arthritis. It caused a retinal inflammation and was discontinued.
The next two serum tests, however, revealed 0 copies of the virus. A test twelve months later revealed the same result. So I hopefully remain free of the virus. Creatine came down to 3.1 and has been steady for the last year. I have had no further issues with high blood pressure.
The reader asks about a safe level of BK Virus. I don't know if there is one. My doctors chose to keep fighting even when the level was low. If the virus is active I think it's doing damage. Anyway, good luck. Your doctors should be willing to discuss all options with you. The response to BK was not set in protocol when I was undergoing treatment.
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Thank you for this info! I have had the BK virus for around two years but my creatinine is 1.1. Leflunomide doesn't seem to be working well so now my doctors are checking into other treatment options. I am glad you are doing better!
ReplyDeleteMy husband has been diagnosed with KK virus they have him on Leflunamide and have greatly reduced immune suppresant drugs now he has developed High Blood Pressure and last read was 161/92 as of 8:30AM Blood pressure medicine Norvasc 5MG is not working
ReplyDeleteHi Debra. High Blood Pressure was a constant struggle and I learned to dread it. Push the doctors to be aggressive in treating the blood pressure. I'm not sure my team made the connection between the rise in blood pressure and the BK Virus, but I think they're connected! Good luck, stay in touch.
ReplyDeleteHi, my father has the bk virus and received treatment four times now. His levels are still high (25k), and the doctor doesn't want to do another treatment. What are our next steps?
ReplyDeleteAnonymous, I really feel your predicament. My guess is that his doctor's reluctance is due to the damage that Cidofovir does to the kidney. Four treatments knocked my virus out, but my creatinine was over 5 when all was said and done. I wish I could do more than comiserate. Good luck.
ReplyDeleteHi Dave my husband is about to begin Cidofovir did you have problems with medical insurance coverage? Did you have reaction to the drug? We are very discouraged as this is 3rd kidney transplant with my donor kidney and BKVN only 4 months post transplant.
ReplyDeleteThank you for the information. I just got diagnosed with BKV. It is good to know what your experience was and how long it took to get your levels back down. It is also good to know your creatinine levels. I'm so tied to that number, it makes me nervous to see it go up. Any problems with muscle pain and/or weakness? There are days when I can barely walk. Other days I seem to be fine though.
ReplyDeleteThank you for this post. I was feeling alone in this.
ReplyDeleteIn January BKV showed up in my urine with numbers of 936,109. Creatinine 1.10. BKV not in plasma. March BKV numbers in urine 372718924 and 1600 in plasma. Now today numbers are 92532764 and plasma is 5568. Creatinine is 1.19. What are acceptable BKV numbers? And how much did you doctor decrease your Prograf by?
The kidney in the human body is too vital an organ to be ignored. Their principal role is to cleanse the blood off the impurities that accumulate as a result of other organ activities.The Manipal Group of Hospitals has extensive facilities for treating Polycystic Kidney Disease symptoms
ReplyDeleteHow long was your battle from beginning to end?
ReplyDeleteSorry to be so long to reply, Diagnosis was confirmed after a kidney biopsis in June. After a series of cidofovir treatments, the virus was totally eliminated by December.
ReplyDelete