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Author Topic: Kidney Disease  (Read 14531 times)

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Offline mikelhc

  • Member
  • Posts: 25
Kidney Disease
« on: October 05, 2015, 06:14:46 am »
I finished Harvoni April 1, and cleared.  I had some pitting edema, but it improved after treatment.  I've had stage 3 Kidney disease, (type 1 or LADA Diabetes) but it was stable for many years.  But for the last several months, it has progressively gotten worse and worse. I've noted several posts and references to Kidney disease, but not that much from Gilead.  Does anyone have any knowledge about Harvoni damaging the Kidneys?
« Last Edit: October 05, 2015, 06:17:21 am by mikelhc »

Offline gnatcatcher

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  • Posts: 1,372
Re: Kidney Disease
« Reply #1 on: October 05, 2015, 07:51:03 am »
I also have Stage III kidney disease (although I don't have diabetes). Before I started Harvoni, I tried to evaluate its risk to my kidneys but couldn't find anything. I also quizzed the hepatologist (who has many patients on or through Harvoni). He indicated:
(1) the clinical trials hadn't revealed a problem, and his patients had been fine;
(2) the only reason Gilead didn't claim safety if eGFR was <30 was that no one with a GFR <30 took part in the clinical trials; and
(3) Harvoni has a half life of only a couple of days, so if I did have a problem, he'd have me stop taking Harvoni and the problem would quickly go away.

Because I just finished Harvoni 5 days ago, I don't have long-term post-Tx data. The most recent labs, taken 16 days before I finished Harvoni, showed a slight elevation of creatinine, but the other kidney results were the same as before Harvoni or slightly improved.

It is more than 6 months since you stopped taking Harvoni. Given its short half life, there would be only a teensy-weensy bit of it in your system now. Biology is not my strong suit, but I'd be very surprised if Harvoni is the cause of your present problem.

Hep C, on the other hand, can cause a variety of extra-hepatic manifestations (EHMs), some of which mimic autoimmune diseases such as RA and lupus. The reason I have kidney damage is because of a 1996 flare attributed to lupus. Once the nephrologist learned of my 2002 HCV diagnosis, he thought it explained aspects of my nephritis that classic lupus didn't explain. There has been speculation on these forums that once treatment finishes, the immune system can get confused and exhibit autoimmune behaviors.

Good luck solving the riddle ASAP. Please post what you learn.
« Last Edit: October 05, 2015, 07:56:11 am by gnatcatcher »
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline mikelhc

  • Member
  • Posts: 25
Re: Kidney Disease
« Reply #2 on: October 05, 2015, 03:07:26 pm »
Thanks for the reply. Part of the frustration, is like other (I suspect), once I was SVR, I expected that other problems, such as kidney disease, would improve, not get worse.  I guess some things are not related, but I tend to think of the body as a wholistic, interconnected system.  With no more chronic, liver infection and inflammation, it seemed logical that overall health would improve.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Kidney Disease
« Reply #3 on: October 20, 2015, 06:13:19 pm »
Would you please post your progress on this? Elevations in creatinine can be affected by water intake. (My husband does not have hep C, but does have stage 3 KD, and every time his creat goes up, his doc tells him to drink lots of water and retest. It always resolves. Anyway, I want to keep taking a pulse on this, including those with no history of CKD as well as those who do.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline gnatcatcher

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  • Posts: 1,372
Re: Kidney Disease
« Reply #4 on: October 20, 2015, 07:13:01 pm »
Lucinda, I know you were asking mikelhc to keep you posted, not me, but I just wanted to mention that my slightly elevated creatinine 16 days before EOT (vs. before treatment) was NOT due to insufficient water intake -- I drank two to three EXTRA cups/day throughout Harvoni treatment.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Kidney Disease
« Reply #5 on: October 21, 2015, 11:02:33 am »
Gnatcatcher - please post next results, if you wouldn't mind. These tests can be very transient, and trends are more significant than single events.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Kidney Disease
« Reply #6 on: October 21, 2015, 12:13:48 pm »
Lucinda, I wasn't concerned about the slight increase in creatinine, just pointing out that in my case the increase wasn't due to a lack of H2O. Next tests aren't until Dec. 23.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Kidney Disease
« Reply #7 on: October 21, 2015, 01:34:17 pm »
Thanks for clarifying.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline butterfly1

  • Member
  • Posts: 4
Re: Kidney Disease
« Reply #8 on: October 29, 2015, 05:37:51 pm »
I completed my 12 weeks of Harvoni on September 14.  I have never had an issue with my kidneys or glucose being out of range.  Just received my lab results and they are all over the place. 

eGFR NON-AFR. AMERICAN - 55 (low)
Creatinine - 108 (High)
Glucose - 101 (High)
Globulin - 3.8 (High)
Neutrophils 1231 (Low)
eGFR African American 64 (High)
Absolute Basophils  34 (Low)
HCV RNA, QUANTITATIVE REAL TIME PCR <15 NOT DETECTED
HCV RNA, QUANTITATIVE REAL TIME PCR <1.18 NOT DETECTED

Prior to starting treatment for Hep C my HCV RNA, QUANTITATIVE REAL TIME PCR was 5.24 (High) and my HCV RNA, QUANTITATIVE REAL TIME PCR was 171836 (high).  I am a 61 year old African American female who was diagnosed with Hep C in 2013.

 Has anyone else had a problem with lab results being out of range like this?  I am really worried about this.
« Last Edit: October 29, 2015, 06:26:32 pm by butterfly1 »

Offline butterfly1

  • Member
  • Posts: 4
Re: Kidney Disease
« Reply #9 on: October 29, 2015, 06:27:05 pm »
I completed my 12 weeks of Harvoni on September 14.  I have never had an issue with my kidneys or glucose being out of range.  Just received my lab results and they are all over the place. 

eGFR NON-AFR. AMERICAN - 55 (low)
Creatinine - 108 (High)
Glucose - 101 (High)
Globulin - 3.8 (High)
Neutrophils 1231 (Low)
eGFR African American 64 (High)
Absolute Basophils  34 (Low)
HCV RNA, QUANTITATIVE REAL TIME PCR <15 NOT DETECTED
HCV RNA, QUANTITATIVE REAL TIME PCR <1.18 NOT DETECTED

Prior to starting treatment for Hep C my HCV RNA, QUANTITATIVE REAL TIME PCR was 5.24 (High) and my HCV RNA, QUANTITATIVE REAL TIME PCR was 171836 (high).  I am a 61 year old African American female who was diagnosed with Hep C in 2013.

 Has anyone else had a problem with lab results being out of range like this?  I am really worried about this.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Kidney Disease
« Reply #10 on: October 29, 2015, 06:48:23 pm »
Thank you for posting this - what does your doc say? (I assume it is wait and see?) Do you drink lots of water? When were these test done?
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Lynn K

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  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Kidney Disease
« Reply #11 on: October 29, 2015, 07:25:25 pm »
Well I can tell you that glucose tests are only useful if you were fasting there are no normals for a non fasting glucose.

About the eGFR test you posted both results for African American and non Africian American one was high and one was low. As you are African American the eGFR African American is the result you will want to look at. You will want to look at the reference range on your lab report. At the lab my results are from the normal range is anything greater than 59 is considered normal.

Here is a link to the Quest Diagnostics test values and explanation of results:
http://www.questdiagnostics.com/testcenter/testguide.action?dc=TS_eGFR

Normal levels of creatinine in the blood are approximately 0.5 to 1.1 milligrams per deciliter in adult females. Not sure what how your lab is reporting these results what scale they are using but as said above creatinine levels can be effected from something as simple as being dehydrated.

http://www.mayoclinic.org/tests-procedures/creatinine/basics/results/prc-20014534

As far as the globulin do you know the reference range for the test are you only a point or 2 above normal?

This link has some reasons Globulin could be high or low:
http://www.webmd.com/a-to-z-guides/total-serum-protein?page=3

For neutrophilis I found:
https://labtestsonline.org/understanding/analytes/differential/tab/test/

Causes of low neutrophils:
Known as neutropenia
•Myelodysplastic syndrome
•Severe, overwhelming infection (e.g., sepsis--neutrophils are used up)
•Reaction to drugs (e.g., penicillin, ibuprofen, phenytoin, etc.)
•Autoimmune disorder
•Chemotherapy
•Cancer that spreads to the bone marrow
•Aplastic anemia

It could just be something as simple as taking ibuprofen (Advil)

Also congrats on being SVR I am guessing this was a 4 week post test so still need to wait until the 12 week post treatment test to declare victory but SVR 4 is a great sign!

I recommend you ask you doctor or your doctors staff to explain your test results. They are the medical professionals and know you individual health situation in order to help you understand the significance of these results in you own circumstances.

Best to you
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline butterfly1

  • Member
  • Posts: 4
Re: Kidney Disease
« Reply #12 on: October 29, 2015, 11:33:12 pm »
Well I can tell you that glucose tests are only useful if you were fasting there are no normals for a non fasting glucose.

About the eGFR test you posted both results for African American and non Africian American one was high and one was low. As you are African American the eGFR African American is the result you will want to look at. You will want to look at the reference range on your lab report. At the lab my results are from the normal range is anything greater than 59 is considered normal.

Here is a link to the Quest Diagnostics test values and explanation of results:
http://www.questdiagnostics.com/testcenter/testguide.action?dc=TS_eGFR

Normal levels of creatinine in the blood are approximately 0.5 to 1.1 milligrams per deciliter in adult females. Not sure what how your lab is reporting these results what scale they are using but as said above creatinine levels can be effected from something as simple as being dehydrated.

http://www.mayoclinic.org/tests-procedures/creatinine/basics/results/prc-20014534

As far as the globulin do you know the reference range for the test are you only a point or 2 above normal?

This link has some reasons Globulin could be high or low:
http://www.webmd.com/a-to-z-guides/total-serum-protein?page=3

For neutrophilis I found:
https://labtestsonline.org/understanding/analytes/differential/tab/test/

Causes of low neutrophils:
Known as neutropenia
•Myelodysplastic syndrome
•Severe, overwhelming infection (e.g., sepsis--neutrophils are used up)
•Reaction to drugs (e.g., penicillin, ibuprofen, phenytoin, etc.)
•Autoimmune disorder
•Chemotherapy
•Cancer that spreads to the bone marrow
•Aplastic anemia

It could just be something as simple as taking ibuprofen (Advil)

Also congrats on being SVR I am guessing this was a 4 week post test so still need to wait until the 12 week post treatment test to declare victory but SVR 4 is a great sign!

I recommend you ask you doctor or your doctors staff to explain your test results. They are the medical professionals and know you individual health situation in order to help you understand the significance of these results in you own circumstances.

Best to you
Lynn

Offline mikelhc

  • Member
  • Posts: 25
Re: Kidney Disease
« Reply #13 on: October 30, 2015, 03:41:13 pm »
Hello, Lucinda.  Here are some recent labs:

Date       Creatinine   eGFR

2/6/15       1.41          53

7/28/15     1.81          40

9/01/15     1.97          36

10/02/15    2.13         33

thanks for your interest...Mike


Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Kidney Disease
« Reply #14 on: October 30, 2015, 04:40:03 pm »
mikelhc, I'm very sorry to see those trends. Is a nephrologist on your case? What does s/he have to say?
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline mikelhc

  • Member
  • Posts: 25
Re: Kidney Disease
« Reply #15 on: October 30, 2015, 05:01:34 pm »
Yes, I have an excellent Nephrologist at the Univ Medical Center. Next appt Feb 1.  I also have type 1 Diabetes and Chronic Kidney Disease.  My doctor praised me in the past for maintaining such good levels (and credited my whole food, plant based diet, as animal protein harms kidneys and arteries, see today's www.NutritionFacts.com ) However, why it has spiked in the last 6 mo or so since being cured of HCV with Harvoni is a mystery...Mike
« Last Edit: October 30, 2015, 05:06:08 pm by mikelhc »

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Kidney Disease
« Reply #16 on: October 30, 2015, 05:11:12 pm »
Mike, there is indeed a mystery here -- one that needs to be solved ASAP. All of your wonderful self-care is no longer keeping kidney damage at bay. It's been another 4 weeks since the most recent labs you posted. If those trends have continued, I suspect you should be seen pronto. Do you have access to some sort of 24-hour nurse line or other rapid-response method? I suspect that if you convey those four sets of lab results to some medical provider, s/he will want to make it possible for you to be seen by a specialist VERY soon -- certainly long before Feb 1.  -Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Kidney Disease
« Reply #17 on: October 30, 2015, 06:42:51 pm »
You don't say your age, but I've seen that degree of changes in older adults and in diabetics, without the possible confounding fact of having taken Harvoni. It may be hard to sort this out, and may be nothing more than just the assault of type 1 diabetes. Sadly, we can't prevent everything, as hard as we try. It sounds like you are in excellent hands.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

 


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