Anyone here with CKD taking Harvoni and Ribo?

[MissJenny]

Hello,
I had a liver transplant 3 years ago and have stage 3 kidney disease. My doctors were holding off on treatment hoping my kidneys would improve a bit but no, so I will be starting a 12 week treatment with harvoni and ribo soon. I haven't been able to find any info on how those with kidney disease fared on this combo. My heptologist and nephrologist will be monitoring my labs every 2 weeks, but it would ease my mind if I could hear from someone in situation similar to mine. Thank you.
Best Regards,

[gnatcatcher]

Welcome, MissJenny.

I can help with the Harvoni part, because I had CKD stage 3 for many years before my HCV was cured via 12 weeks of Harvoni. I was concerned because the prescribing information for Harvoni included this: "No dosage recommendation can be given for patients with severe renal impairment (estimated Glomerular Filtration Rate [eGFR] less than 30 mL/min/1.73 m2)" -- my eGFR before starting treatment was 29. The hepatologist explained that the language in the PI meant that no one with an eGFR below 30 had been in the clinical trials, but he didn't expect my kidneys to have a problem. Indeed, my eGFR result during tx was 36 and during the >20 months since I finished treatment, results have been 39, 42, and 35. My kidney status remains at stage 3 kidney disease.

Another thing to weigh is that HCV itself can be hard on the kidneys. That might be why your kidneys haven't been able to improve. Getting cured can help to keep your kidney function stable.

I hope someone else will be able to answer the riba part or, better yet, the combo. From reading these forums, I can tell you that some people have had the riba part of their treatment reduced part-way through treatment, and they have still been cured. You will be closely monitored, so if the riba proves difficult, dose reduction may be a possibility.

Feel free to keep asking questions. Best wishes,

Gnatty

[MissJenny]

Hello,
Thank you Gnatty. It is reassuring to have someone with CKD tell me they finished the Harvoni treatment and their kidneys are none the worse for it. My doctor wants me to do the Harvoni and Ribo combo because I was a non-responder twice back in the days of interferon. I was very close to death when I received my transplant 3 years ago. I was so ill I was kept in an induced coma for a time. I was in the hospital for about 2 months after my transplant, and some of that time was spent learning how to walk again. After my experience with HCV I will definitely, no matter what, do the treatment, but it is good news to hear about your success with the treatment. Thanks again.

[gnatcatcher]

You have really been through the mill. I'm greatly looking forward to the day when I can congratulate you for getting cured. It WILL happen -- it happened for a forum member who got cured by Harvoni + riba after four unsuccessful treatments with other combos.

[Lynn K]

Hi Miss Jenny and welcome

Wow sounds like you are one heck of a fighter and been through one hell of a fight.

I don't have CKD but did treat with Harvoni and Ribavirin. I did need to dose reduce as like the previous times when I treated with interferon and ribavirin I became anemic with my HGB count falling below 10.

I have a friend who had signifigant kidney disease unrelated to hep c who treated and was cured as I recall he didn't have any special problems on treatment.

I am thinking they don't have much information about ribavirin and CKD because they didn't allow patients with impaired kidneys to participate in the trials. But there have been people who have treated successfully. Probably the most important thing is that you are being followed closely by your doctors as your situation is more complicated than most.

Best of luck to you you definitely deserve it!

keep in touch and let us know how it is going

[MissJenny]

Hello,
Thank you Gnatty and Lynn for taking the time to address my question. I was feeling kind of lost. i asked my transplant coordinator this question and she took offense and told me the doctor wouldn't give me medicine that I shouldn't have. I guess I'll just have to try this combo and cross my fingers. I'm very glad I happened upon you kind folks. I'm taking my first dose tonight. I'm very optimistic. Thanks for the well wishes. I'm sure I'll be back with more questions and maybe I can answer a few questions as well.

[gnatcatcher]

IMO, your transplant coordinator is in the wrong line of work if she takes offense when asked a good question by a patient. I hope at least one of the doctors monitoring you takes kindly to questions. Because I know I have compromised kidneys and liver and my spleen was removed (during which surgery I received the transfusions containing HCV back before doctors knew what HCV was or how it spread), any time any doctor wants to prescribe anything I've never taken before, I ask how it will affect my kidneys, liver, and immune system given my lack of a spleen. I do this mainly as a reminder to the doctor, who is probably forced to see patients too quickly to read my chart thoroughly. I also have condensed my thick medical records to a single page of crucial facts: list of all my diagnoses (with start dates), current issues, allergies, current meds, vaccinations (with dates). I hand this to any doctor or dentist I'm seeing for the first time and have been thanked profusely by many of them. Seeing how a doctor reacts to this sheet also tells me how much I can trust him or her. The best doctors appreciate help; that snippy transplant coordinator isn't as helpful to the doctors she serves as a non-snippy one, who could provide a double-check that the doctor isn't overlooking anything.

Anyway, here's wishing you an easy time on treatment.

Gnatty