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Author Topic: On treatment with Zepatier  (Read 2187 times)

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Offline Salal

  • Member
  • Posts: 27
On treatment with Zepatier
« on: February 10, 2018, 07:06:09 pm »
Hi,

I am nearly finished my first 28-day pack of pills and have been given the next pack by my assigned nurse at the Clinic.  I spoke to her on the phone about something I had heard in a Harvoni ad on TV which mentioned, as one of the many possible side-effects, the reactivation of a past resolved HBV infection.  My online research suggested Zepatier could have the same effect.  So I was alarmed.  My nurse was surprised to learn I ever had HBV, she put me on hold while she dug up the blood tests results she had for me, and confirmed that there was nothing about HBV, just HAV.  I have never had HAV.  I have a 2009 test result for that which says I have never been expose to HAV and have no immunity.  My nurse asked me to bring the tests showing I have a past resolved case of HVB, (I have three such tests, and one is the 2009 test that showed I've never had HAV.)

It turned out - and this is truly shocking - that she had the blood test results of another woman with the same first and last name, but this woman had a middle name, and I do not!  It wasn't me.  She didn't even have the same BC Medical Services Plan number I do.  So I let my nurse copy the test result I brought in, and now she has the correct history.

She gave me a lab requisition for monthly HBV tests for 6 months. Anybody here had to deal with a past resolved HBV infection at the same time they were being treated for HCV?  It's a very small number of people who do have reactivation, but still, it is scary because there is no cure for HBV as far as I can tell, and it is even worse than HCV as far as liver disease is concerned.

I can't say I have really had any side effects from the Zepatier. No headaches, no fatigue - the most common side effects.  I do have a high pulse rate, though.  Except for when working out, I've never seen my pulse rate at 124 bpm before.  This is not a known side effect of Zepatier, though it is a known response to recovery from a virus, so I hope it means the treatment is working.  My nurse told me that when the virus first leaves the body, the immune system goes crazy because it has been living with HCV for decades.  I don't know if that could increase my pulse rate.  Anybody know?  Where I live, they do not test you again for HCV until 6 months after your treatment ends, so I have no way of knowing what is happening.


Offline gnatcatcher

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  • Posts: 1,372
Re: On treatment with Zepatier
« Reply #1 on: February 10, 2018, 08:10:05 pm »
Hi, Salal. Here is the potentially useful information I can contribute:

   Many people with HCV appear to lose their immunity to HBV (their antibody titers are too low) but are probably still immune. You can have any vaccination (such as an HBV booster) while on HCV treatment. (My hepatologist gave me the booster.) See this post: https://forums.hepmag.com/index.php?topic=3694.msg37719#msg37719
   HBV reactivation is only a risk in those who have not fully sero-converted. It can be treated with Entecavir while on most current HCV medications. See this post: https://forums.hepmag.com/index.php?topic=4786.msg49331#msg49331

   As for the high pulse rate, I take home blood pressure readings three times a day, so I looked at my results before, during, and after treatment with Harvoni. My pulse rate went up during treatment, but not by much, perhaps 4 or 5 points on average.

Best wishes,

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 Salal

  • Member
  • Posts: 27
Re: On treatment with Zepatier
« Reply #2 on: February 10, 2018, 11:53:14 pm »
Thank you!  It is helpful to know if my increased pulse rate is unusual. I will have to look at other things I may be doing or not doing to account for that.  I have been pretty sedentary the last few months, and that is not good.

I will write down the name of the vaccination you had for HBV, but if you do not live in Canada, it is possible it has been approved where you live but not in Canada, yet.  I find it hard to believe the clinic I go to for my treatment hasn't heard about it, but then... they managed to screw up with two different patients' records, so...



Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: On treatment with Zepatier
« Reply #3 on: February 11, 2018, 05:20:09 am »
I didn't give you a name for my vaccination booster.
Entecavir (brand name Baraclude) is used to treat an active case of HBV: https://en.wikipedia.org/wiki/Entecavir

Here in the USA, people who haven't been exposed to HBV are given a series of vaccination shots to make them immune to it. If a person has already had HBV, then the vaccinations aren't needed because the immune system already recognizes it. The reason I received the booster vaccination shot was because I was one of the large number of people with HCV who appear to lose their immunity to HBV (a test shows too low a level of antibodies to HBV). HBV vaccinations aren't new. I was first vaccinated in or around the year 2000.

-forgot to say in my first post that I'm glad you're being monitored for HBV while being treated for HCV. As for not getting another HCV viral load test until 6 months after treatment, that's not so unusual these days, because the new meds have such near-perfect cure rates. Another way people tell if treatment is working is if their ALT and/or AST scores in the liver enzyme test panel were abnormally high before they began treatment but a liver enzyme test panel during treatment shows normalizing ALT and AST. (The liver enzyme test panel is a lot cheaper than the HCV viral load test.)
« Last Edit: February 11, 2018, 05:22:36 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 Salal

  • Member
  • Posts: 27
Re: On treatment with Zepatier
« Reply #4 on: February 11, 2018, 10:55:08 pm »
Just to clarify, you never actually had HBV, you just had the vaccine, and it seemed to have worn off?

Well, I fall into that large number you describe who haven't got immunity, even though I had a past resolved infection.

Yes, I see that it was the HBV treatment that you actually provided a name for.  It does not look like I will be getting any protection from reactivation while on Zepatier, so I certainly hope that medication is available here.  Just in case...

I know from past experience that it is better to be calm in the face of life-threatening illness than to be wringing my hands all the time.  So I will try to stop :)
« Last Edit: February 11, 2018, 11:20:21 pm by Salal »

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: On treatment with Zepatier
« Reply #5 on: February 12, 2018, 03:59:43 am »
Just to clarify, you never actually had HBV, you just had the vaccine, and it seemed to have worn off?...
Correct. I just checked my records: After my first round of HBV vaccinations in 2000-2001, my titer of antibodies was already so low in 2003 that I received a second round of vaccinations. Then, when I had the HBV antibody test in 2015 before getting Harvoni, my titer was found to be too low again, hence the booster.

Since Entecavir a.k.a. Baraclude is on the W.H.O.'s list of essential medicines, and BC wouldn't want the world to view it as a third-world province (that would take a big bite out of its tourist industry), chances are it's available ;)
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 Type0Negative

  • Member
  • Posts: 50
Re: On treatment with Zepatier
« Reply #6 on: February 16, 2018, 09:22:23 pm »
I am on another drug and have high heart rate at rest. I just started and it is scary- was hoping it would get better with time- looks like it does not?

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 3,776
  • Get tested, get treated, get cured, fight Hep c!
Re: On treatment with Zepatier
« Reply #7 on: February 16, 2018, 10:19:36 pm »
Are you asking if your elevated heart rate will get better with time?

That Is most likely not related to hep c. Your best bet would be to discuss your heart rate prognosis with the doctor who prescribed your heart rate medicine.
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 Salal

  • Member
  • Posts: 27
Re: On treatment with Zepatier
« Reply #8 on: February 17, 2018, 12:17:33 am »
Are you asking if your elevated heart rate will get better with time?

That Is most likely not related to hep c. Your best bet would be to discuss your heart rate prognosis with the doctor who prescribed your heart rate medicine.

Heart rate medicine?  Such as?

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: On treatment with Zepatier
« Reply #9 on: February 17, 2018, 02:10:38 am »
I just assumed from Type O’s comment “I am on another drug and have high heart rate at rest.” That he was taking a medicine to treat his heart rate.

I am aware that beta blockers can lower heart rate. When I developed esophageal varicies that was one treatment option for me to use beta blockers to lower my heart rate to about 60 apparently this can help with portal hypertension. But as my resting heart rate is already below 60 this was not an option for me so I had multiple upper endoscopies done to band my varicies.

I guess beta blockers are also used to treat high blood pressure in the same way. That decreasing the heart rate can also help reduce high veinous blood pressure.

https://www.webmd.com/heart-disease/guide/beta-blocker-therapy

“Beta-blockers are one of the most widely prescribed classes of drugs to treat hypertension (high blood pressure) and are a mainstay treatment of congestive heart failure. Beta-blockers work by blocking the effects of epinephrine (adrenaline) and slowing the heart's rate, thereby decreasing the heart’s demand for oxygen. Long-term use of beta-blockers helps manage chronic heart failure.”

I just was trying to better understand what he was asking what does he want to get better with time? 
« Last Edit: February 17, 2018, 03:28:29 am by Lynn K »
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 gnatcatcher

  • Member
  • Posts: 1,372
Re: On treatment with Zepatier
« Reply #10 on: February 17, 2018, 05:14:12 am »
I am on another drug and have high heart rate at rest. I just started and it is scary- was hoping it would get better with time- looks like it does not?
By "I am on another drug," do you mean that what you are taking to cure your HCV isn't Zepatier but something else like Harvoni or Daklinza? If your actual pulse measurements are too fast (as opposed to feeling revved up all the time -- what those of us on Harvoni in 2015 nicknamed the "Harvoni high"), definitely bring this to the attention of a medical professional.
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 Salal

  • Member
  • Posts: 27
Re: On treatment with Zepatier
« Reply #11 on: February 17, 2018, 12:55:14 pm »
Yes, that is what I thought TypeONegative meant, that Zepatier was not the drug she (or he) was taking to treat HCV. 

Well, I have been checking my blood pressure and pulse at a nearby pharmacy for the week that my nurse at the clinic asked me to, and my average heart rate over the week is nothing I'd be prescribed a beta blocker for.  Thanks to Lynn for the information, though, about beta blockers.  I've heard of them, but didn't know what they were for.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 3,776
  • Get tested, get treated, get cured, fight Hep c!
Re: On treatment with Zepatier
« Reply #12 on: February 17, 2018, 04:10:53 pm »
Yeah Beta blockers are primarily for high blood pressure but can also be used in advanced cirrhosis to help with portal hypertension to prevent an esophageal varicial bleeding episode.
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 Type0Negative

  • Member
  • Posts: 50
Re: On treatment with Zepatier
« Reply #13 on: February 17, 2018, 06:22:57 pm »
Yes, I meant another antiviral, and I am "she". I just started and this morning the HR was real problem. (See other thread). But the encouraging message is that Salal almost done with treatment and did not have to stop. I was honestly afraid to take another dose this morning. The doc did not want to recommend beta blocker- I asked.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: On treatment with Zepatier
« Reply #14 on: February 17, 2018, 08:50:31 pm »
Type0-, I've read your other thread. Glad you are observing carefully what happens when. Because the physician with whom you spoke was the on-call doc who doesn't know you, if the fast heart rate problem continues (whether or not Mavyret has a role), please let your regular physician know.

"So I called the on call physician. He told me that such side effect is not known and that it must be me." What an unscientific attitude he has! Not all side effects are found during the clinical trials, and Mavyret is still a "young" medicine. I'm NOT saying that this is a side effect, just that his dismissing the possibility out of hand is wrongheaded. Your careful documentation will help separate out what may or may not be affected by anxiety.
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 Salal

  • Member
  • Posts: 27
Re: On treatment with Zepatier
« Reply #15 on: March 03, 2018, 02:46:33 pm »
I've now had my first monthly blood test to monitor for reactivation of HBV.  This was the only result that was posted to myehealth for me, though I might get more information when I go to the clinic next on Tuesday.

Hepatitis B Serology
Hep B Virus DNA (Probe)     <25

It doesn't show the unit used, so I will assume it is IU/mL.  Is this a good result? Anybody know?

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 3,776
  • Get tested, get treated, get cured, fight Hep c!
Re: On treatment with Zepatier
« Reply #16 on: March 03, 2018, 09:36:58 pm »
I have heard hep b testing is a bit more complicated than hep c so likely you would want to ask your doctor. But below 25 does sound like good news.
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 Salal

  • Member
  • Posts: 27
Re: On treatment with Zepatier
« Reply #17 on: March 08, 2018, 11:49:56 pm »
Just getting near the end of my 2nd 28-day set of pills, and am wondering if anyone on any HCV treatment noticed that the common side effects began more than halfway through the treatment? I am feeling increasingly fatigued now, and had the first headache I've had in years, today. Both are common side effects of Zepatier, and probably other DAAs for HCV.  And now that it has begun is it likely to get worse?

Offline gnatcatcher

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  • Posts: 1,372
Re: On treatment with Zepatier
« Reply #18 on: March 09, 2018, 04:01:42 am »
Looking back through my 84-day Harvoni treatment log, my only headaches (despite staying well hydrated) were on days 30, 62, and 64-65. Despite a "jazzed up" energy throughout treatment, I experienced fatigue on days 39-41, 43, and 72-74. The various other side effects also came and went. YMMV.
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 Salal

  • Member
  • Posts: 27
Re: On treatment with Zepatier
« Reply #19 on: March 09, 2018, 11:32:05 am »
Yes, I woke up this morning feeling more like myself. So hopefully, as with you, the side effects will only be periodic.

Reading your footnotes, I've realized you were probably infected by blood transfusions, prior to the days when there was any sort of screening.  What crummy luck.  And then to have such a degree of liver damage later on in life. I am just very glad to see that you and your liver have made pretty much a full recovery.

Totally off topic, my mother tried to wake me up this morning, but I could not open my eyes, I was too sleepy. Today is the third anniversary of her death, and I have plans to make a pilgrimage to the site where we scattered her ashes and pay my respects.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: On treatment with Zepatier
« Reply #20 on: March 09, 2018, 11:41:26 am »
Glad you are feeling better. Yes, transfusions had to have caused my HCV, and my liver has made a far better recovery than I expected. (The HCV caused other damage that may be permanent; as you say, crummy luck.)

That was some dream you had today -- it's possible that the upcoming anniversary of your mother's death drained some of your energy yesterday. I hope happy memories will be in the forefront as you pay your respects.
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 Salal

  • Member
  • Posts: 27
Re: On treatment with Zepatier
« Reply #21 on: March 12, 2018, 05:46:30 pm »
Yes, that was a good result.  Apparently in our Labs, here in BC, this means normal. There is no such thing as "undetected" in HBV testing.  My nurse at the hepatits-specialized clinic I go to told me that I will be the last to be sent for HBV DNA tests, they are switching to a liver enzyme test which will work about as well. The DNA tests, she said, are very expensive, in comparison.


 


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