gfr dropped

physedgirl09 said...
Hey everyone

So my gfr has always been over 100...usually staying arounf 115 or so...

i just got my levels tested after my week of starting daraprim and bactrim and my gfr dropped to 76... its still saying its normal but to me thats a significant drop...

should i be worried?

Physedgirl- I’m so glad you posted so I could share what happened to my gfr (and creatinine)
You may have missed it in other posts.

My gfr throughout treatment has always been above 60 (the cutoff for healthy kidney )

Mine did fluctuate more than yours’ though.
Ranged from mid 70’s to over 100 and almost always over 80

Then I went on the Persisters protocol which included dapsone and Rifabutin along with the Daraprim.

After the first round my gfr was below 60 and it took a week to recover to over 60.
Same thing second, third and fourth round. But it would take 3 weeks to recover.

My husband said not to worry because it keeps recovering.
But I was concerned - how many kicks would it take before it became permanent?

So after the 4 cycles I had my follow up phone appt with DrJ.
He told me to do two more persisters cycles and then move to a Maintenance protocol of Rifabutin, mino and Ceftin (and of course Flagyl
It was then that he told me my bad reactions I had been having were most likely Rifabutin herxes and not the D or D,

At that point I decided to do (on my own) a maintenance protocol right away - before my last two cycles of the D and D... as I wanted to know for sure if it was Rifabutin or one of the D’s causing the kidney issue.

Well I did it and learned;

1) My kidneys are fine on Rifabutin as my gfr was good when I tested a few days after finishing that week and
2) Rifabutin is causing my herxes because I had the high temperature, fast heart rate body pain again after this protocol.

Dr J had already told me he figured it was a herx from Rifabutin and not the D or D

So this is a long winded way to let let you know that I think it’s the Daraprim!!
And this lets me know also that it’s likeky the Daraprim (not Dapsone) causing my kidney issues - so thanks for your info that helped me narrow it down to the Daraprim.

I doubt they’ll call you if it doesn’t drop below 60 as it’s still a good number you’re getting.

To ease your mind you could test them after a couple weeks and you’ll likely see the gfr back up.
But because you’re still in a healthy range, it’s not really necessary.

Do you test the creatinine too?(another kidney function test)

Mine was out of range along with the GfR.
I forgot to mention that in my first post.

My creatinine was at 0.96 which was marked as normal. Everything on my CBC was normal. Nothing out of range. These past few years I was diagnosed with ITP which is a low platelet count. The last few blood draws my platelets have been in normal range for the first time ever. And also this last draw, my white cells are at 5.1. Usually they are upper 3’s or lower 4’s. So crazy all the fluctuations