Starting Mavyret Tomorrow

[randalls]

Aloha from Maui... I’m staring Mavyret for 8 weeeks and I’m grateful to have found this forum and everyone that has shared experiences here. So thank you to all of you, I don’t imagine this is a walk in the park...

I have some questions if anyone cares to comment - I don’t have all the stats but my viral load was 2. Million, is that high? I’m not sure the genotype and the other stats, bit I will get them from my doc...

I’m 67 long time surfer and windsurfer, but I’ve been losing my stamina over the years, seems like my get up and go, got up and left....I’m hoping that post treatment I will get some of that back... I’ll try to update as I go through this and report my experience hoping for smooth sailing - cheers

[Lynn K]

Hi, welcome and aloha to you Randalls

Congrats on starting treatment. Viral load a 2 mill is basically moderate range but that really doesn’t matter with these newer treatments like it did with the old much harsher interferon treatments that were the only medicines available up until 2014.

Viral load doesn’t indicate severity of illness and will fluctuate over time. What you will want to know is how is your liver doing. If you were infected for many years (decades) about 20% of people who have hep c for 20 years will develop liver damage so hopefully your doc has ordered a Fibroscan test which uses a machine that is sort of like an ultrasound except it produces a sort of thump to measure liver stiffness or a fibrosure blood test which can also estimate liver scarring. Hopefully your liver has hung in there however long you have carried the virus and that is not a problem for you.

Most people tolerate these new treatments very well the most common complaint being mild headache which seems to pe prevented by staying properly hydrated the old 8 each 8 ounce glasses of fluids daily. For me in comparison with my previous interferon based treatments my 24 weeks of Harvoni was a walk in the park.

Good luck on treatment may you have an easy ride

[randalls]

Thank you Lynn (my sisters name)  for the info...

Doc did say I had some damage based on bloodwork 3 of 4 on Fibro and 4 of 4 cirrohis... I do feel tired and anxious  a lot... 

[Lynn K]

Ok so it does seem you do have liver cirrhosis.

How are your platelet counts? Do you have any symptoms of liver disease like lower leg swelling (edema) or abdominal fluid retention called ascities?

I was diagnosed with liver cirrhosis back in January 2008 and I’m still here. With proper care a person with cirrhosis can live a normal life span. You should stop all alcohol intake if you haven’t already And try to minimize your salt intake. Also, avoid NSAID’s like Aleve and only take Tylenol for pain and only as directed.

Are you seeing a hepatologist or at least a gastroenterologist familiar with treating patients with advanced liver disease? Have you had an upper endoscopy to check for the presence of esophageal varicies? In advanced liver disease the blood flowing through the main vein in the liver called the portal vein may develop higher than normal blood pressure in the portal vein. This is called portal hypertension. This in turn can cause the spleen to become enlarged which will cause the spleen to hold onto blood platelets lowering platelet count tests. This is why people with liver cirrhosis bruise more easily. Portal hypertension can also cause the blood vessels in the esophagus (the swallowing tube) to become enlarged.

Let me know if you have any questions

[randalls]

So 1st day taking Mavyret, totally uneventful for any of you with apprehension. In an odd way I felt like a fog had lifted, like the medicine was working immediately, for the first time in days I had more energy and less fatigue than I’d been feeling regularly. -hope it lasts. Maybe it’s just my imagination.

If anything, I’m excited and motivated to get through the next 29 days...

Aloha, Randalls

[randalls]

Lynn,

Thanks for your remarks...I have a gastro md... I have to get all the results from my labs and will share.

Maui does not have the best healthcare, it getting better but somewhat limited, I had to fight to get this medication, I was denied by insurance several times!! That’s criminal...

I haven’t had a drink in 25 years, except for an occasional glass of wine....I do have a cardiologist and they told me my vitals are good, I will look into seeing a hematologist, but I have no symptoms of liver disease except for fatigue, I’m 5’8’ 164 lbs and athletic ...last week I was windsurfing in 15 foot surf... but my stamina isn’t what it used to be. I’m hoping after treatment I will have more energy... I’m 67 and still here LOL...I have not had any of the tests you mentioned and not one doc I’ve seen recommended ANYTHING???  That’s the disadvantage of healthcare on a small island, they don’t offer much advice, I have to literally demand and beg for treatment or tests . I have yet to meet a doc here that was proactive. Sad...

Ok so it does seem you do have liver cirrhosis.

How are your platelet counts? Do you have any symptoms of liver disease like lower leg swelling (edema) or abdominal fluid retention called ascities?

I was diagnosed with liver cirrhosis back in January 2008 and I’m still here. With proper care a person with cirrhosis can live a normal life span. You should stop all alcohol intake if you haven’t already And try to minimize your salt intake. Also, avoid NSAID’s like Aleve and only take Tylenol for pain and only as Lynn,
directed.

Are you seeing a hepatologist or at least a gastroenterologist familiar with treating patients with advanced liver disease? Have you had an upper endoscopy to check for the presence of esophageal varicies? In advanced liver disease the blood flowing through the main vein in the liver called the portal vein may develop higher than normal blood pressure in the portal vein. This is called portal hypertension. This in turn can cause the spleen to become enlarged which will cause the spleen to hold onto blood platelets lowering platelet count tests. This is why people with liver cirrhosis bruise more easily. Portal hypertension can also cause the blood vessels in the esophagus (the swallowing tube) to become enlarged.

Let me know if you have any questions

[Lynn K]

Early liver cirrhosis really has no noticeable symptoms. Mostly only things picked up by lab tests. Once you have symptoms that means your liver is beginning to decompensate.

When I was initially diagnosed with cirrhosis my doctor had me get immunized against hepatitis A and B as well as the pneumonia vaccine even though I was only 50 at the time. He also got me set up for an upper endoscopy where it was found I had grade one varicies. I was rechecked two years later my varicies has increased to grade two. I was then checked the next year and learned I now had grade three varicies which required treatment in order to avoid a potentially life threatening esophageal bleeding event. I was not able to take beta blockers because I already have a relatively low heart rate so over the next four months I underwent four upper endoscopies one each month to band the enlarged blood vessels. That was back in 2012. Since then I was being checked every year to make sure I didn’t have a reoccurrence of significant varicies. Since I’ve been good for several years my hepatologist said we can now go two years between upper endoscopies especially since I’m cured of hep c.

You said you would look into seeing a hematologist I think spell check might have got you in that one. A hematologist is a blood disease specialist a hepatologist is a liver specialist hepa meaning liver like hepatitis means liver inflammation.

If you have low platelet counts that is a symptom of liver disease well at least it can be and because we have cirrhosis our liver disease would be the cause of a low platelet count.

Symptoms of end stage liver disease are ascities which is fluid retention in the abdomen it can be mild at first but can get so serious the person appears pregnant and will need to be drained. Hepatic Encepatholopathy or HE is mental confusion which can be mild or pronounced or even result in coma. Because the liver is becoming unable to function toxins that are normally removed by the liver circulate in the blood in increasing amounts causing HE. They say about 50% of people with cirrhosis have at least mild HE.

Here is an article about HE:
https://liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/hepatic-encephalopathy/diagnosing-hepatic-encephalopathy/

Do you have abdominal ultrasounds and blood testing to include the AFP (alpha fetoprotine) blood test every six months? AFP is used as a tumor marker to detect possible liver cancer. Because we have cirrhosis we are at risk for developing liver cancer (HCC) although with cure of hep c that risk is reduced. The ultrasounds are to look for liver tumors to catch them early while hopefully still treatable. Has anyone mentioned your MELD score? The MELD score is calculated from a few of yoyr blood test results. MELD stands for Model for End-stage Liver Disease.

https://www.mdcalc.com/meld-score-model-end-stage-liver-disease-12-older

I was also advised to get my flu shot every year as soon as it becomes available. Because we have cirrhosis we are considered immune compromised. I know I’m fine and you feel fine but really we’re not that fine we are somewhat medically fragile as hard as that may be to get your head around. I really would suggest you give up that occasional glass of wine. You liver will thank you.

Another thing we have to be careful with is NSAID medicines like Aleve or Advil and aspirin. We are at increased bleeding risk for the same reason people with cirrhosis bruise more easily and NSAID’s increase this risk so we are recommended to only take Tylenol but no more than the recommended daily dosage and not for long periods as too much Tylenol can cause liver injury but still safer than having an internal bleeding situation.

Anyway I hate to be the bearer of bad news and it does seem like your medical team hasn’t been very forthcoming with information. Hoping you are on the better side of liver disease and don’t have any hidden symptoms going on.

Here is a good basic page about liver cirrhosis it explains liver cirrhosis better than I ever could

https://www.hepatitis.va.gov/pdf/cirrhosis_handbook.pdf

[randalls]

Update - Two weeks into 8 week treatment with Mavyret,’

I have had zero side effects, no headache, no fatigue good sleep... I’m looking forward to my blood test at 4 weeks...