Treating the BK virus with lowered immunosuppression

I just had my second week of immunoglobulin treatment for the BK viral infection.  The infusion is easy, just takes more time.  This virus has felt like a full time job lately.  I'm anxious to be done with that aspect of it.

Dr. Bellin, after discussing my situation with a Nephologist and ID doctor in Minnesota has decided to drastically decrease my immunosuppression.  Before the virus was discovered, I was taking 50mg of Imuran twice a day, and 6mg of Prograf twice a day.  Now, I'm not taking any Imuran at all and I'm only taking 1.5mg of Prograf twice a day.  It was a little shocking when I was told this, but I understand and agree with this decision.  My kidneys are in trouble.  And they must be put ahead of my islets.

Its been almost a week since I started this reduction.  The very interesting thing is that my blood sugars have been very good.  Lower than they have been in a long time.  And my insulin requirements are decreasing at the same time.  I've dropped from about 18 units/day to 16 units/day.  And my appetite has dramatically increased.  I feel hungry much more often and am eating more at each meal.  I'm probably gaining weight.

I'm not sure what to make of this.  Its certainly not what I had expected.  My theory is that without the immunsuppression, my body is under less stress.  Less stress has always led to better blood sugars.  I just have to hope that my islets are safe throughout all of this.

My last labs were good.  I was very worried because I had a low hemoglobin level in the previous draw.  I was down to 9.5.  Normal is about 12-16, so this is not good.  I was warned by the pharmacist that Imuran can lead to low hemoglobin and I was worried that I might have to deal with that again.

This last hemoglobin result was 11.2 which is much better and going in the right direction.
My lipid panel was all normal.
My creatinine was 1.8 which is still too high.
My A1c was 6.8 which is higher than I like, but understandable considering all that I have been through in these last few months.  The next one WILL be lower.

at the San Diego zoo

My cold is about gone now.  I'm feeling pretty good.  We are experiencing some really cold weather at the moment, but as soon as it is past, I'm hoping to start walking again.

Treating the BK virus with immunoglobulins

Well, the Cidofovir didn't seem to do the trick.  I still haven't heard how the last viral load test for the BK virus came out.  But, since I've been moved on to plan B, I assume not so good.

my lovely picc line

The new treatment is to have immunoglobulins administered through my picc line.  The immunoglobulins are antibodies to the BK virus that are somehow manufactured.  They are not directly from people.  I asked about this because if it was from people, I would have to worry about receiving more antibodies.

The treatment will consist of five weeks, one day a week of infusions.  The infusions should last just a few hours.  I just had the first session and did fine.  My blood pressure was increased for part of it, but seems to have come back down.

Here is a paper that looks at several typed of treatment for the BK virus.  I'm on my third try.  I've reduced my immunosuppression, tried Cidofovir, and am now trying the immunogobulin treatment.  I do have to wonder why this is plan B behind the toxic treatments of Cidofovir.  I'm assuming its stats aren't as good.  Hopefully, my experience will raise those statistics some.

Besides all of this, I've caught a cold.  I've had it for about 10 days now.  Its an upper respiratory infection and is holding on strong.  I went to my GP when it first started.  At that time, I had a bad case of laryngitis.  He says the laryngitis means that it is most likely viral and will just have to run its course.

My blood sugars are still good.  I'm using about 17 units of insulin/day.

We had a very nice trip to San Diego to see the kids and have our belated White Christmas.  The weather was unbelievably cold, but we had a good time visiting with the kids and dogs.   

Treating the BK virus as an outpatient

I received this during my hospital stay.

I was released from the hospital on Friday after my third treatment with the antiviral, Cidofovir.  I was tolerating it well and it was decided that I could continue with my treatment as an outpatient. That was fine by me.  So, I had the weekend "off", and started my treatments on Monday morning.  The day before Christmas.

The treatments were the same as in the hospital.  I take the Probenecid before I leave, the saline IV is started when I get there, followed by the Cidofovir, and then more saline IV.  I take the final two doses of Probenecid afterward.  I'm still getting a few side effects, but they aren't too severe.  I get a headache that is helped significantly by tylenol, and I feel tired.

My lab values remained quite stable throughout this.

                        Mon                Wed               Fri                  Mon             Wed          Fri
creatinine         1.62                 1.79              1.67                1.78              1.79           1.70
BUN                 51                    49                 45                   52                 52             45

My Potassium is down to 4.5 which is very good.  I'm hoping to not have to take the kaexolate for that soon.  My BGs are remaining good.

Unfortunately my viral titer numbers aren't so good.  When I was diagnosed with the BK virus, it was at 5.54.  I was drawn after two Cidofovir treatments and it wasn't much lower.  I was drawn again on Friday, and found out this Monday that that level is 5.03.  Not a significant difference.  Since it was New Year's Eve day, I had a hard time getting hold of a doctor that knew anything about this treatment.  I was feeling that I should not be having this treatment that is so stressful to my kidneys if it wasn't working.  But, I'm not the one who makes that call.  I finally got a doctor with the help of a very responsible and caring nurse who knew about my case.  My doctor was on vacation, and according to his office staff, completely unreachable.  It was a frustrating day.  The doctor that I spoke with said that I should continue with the treatment on Wednesday, and he would discuss it with my doctor in the meantime to decide what to do next.  He said that the viral titer still could drop off quickly.  He also said that the next treatment option would be to give me immunoglobulin treatment.  I'll have to google that to see what it entails. My nice nurse told me that its another IV treatment, but not as intensive as for the Cidofovir.

No New Year's dip in the river for me this year. With my picc line in, I'm not watertight.  Gary braved the cold though, and it was still a fun day.