Mavyret & Me: Side Effects (On Week 2 and Will Update Continually)

[khristy]

Hey all!

I was diagnosed October of last year with acute hepatitis and eventually was chronic and was approved for Mavyret which I started 2 weeks ago today.  Here is a bulleted list of the side effects I am experiencing from the medication which I have called both my doctor and pharmacist to notate:

• Extreme Insomnia - I no longer sleep at night and finally can pass out when the sun is already out, I take Benadryl to help
• Extreme Fatigue - I sleep off and on all day, the most movement I'm getting is probably walking the dog
• Headaches - It starts at the base of my skull and spreads to my temples and usually happens at night.  I drink about a gallon of water a day and am eating fairly regularly to help prevent them.  These started in the second week.
• Mood Changes - Anxiety, irritability, depression - I already have these and am medicated and immediately after taken this medication I started having pretty serious mood changes and crying spells which I try to meditate and rationalize but it gets pretty intense
• Rash - I got a splotchy rash on my lower legs that faded after a little while but you can still see where it is and occasionally a quarter sized bright red splotchy rash will appear and is super itchy but since I take so much benadryl to sleep it kind of helps with that
• Stomach Problems - If I eat a meal inbetween meals or a large snack I will get stomach cramps and also mild constipation
• Pupil Changes - I've noticed throughout the day after taking the medication my eyes will change in pupil size at rapid pace,  I haven't had much blurred vision unless I am dizzy but I already wear glasses but I will update this post if it changes!
• Dizziness - With the fatigue I get bouts of dizziness so I have only gone out of the house a few times in the last couple of weeks - I can't really see myself going to work in the state it puts me which is worrisome but I kind of prepared myself for it.
• Feeling "Under the Influence" - It's really hard to describe but it's more like you can tell you've taken something.  My eyes have a heavy feeling and slightly burn and my head gets extremely foggy.  There is probably a couple hour window of clarity which is where I am to type this.
• Joint Pain - I have pretty bad arthritis in my knees for only being in my late 20s, and had surgery on my right knee almost exactly a year ago.  The pain while sitting still will throb off and on and body aches happen off and on.
• Dry Mouth - I try to stay almost over hydrated since I contracted hepatitis as it has taken a toll on my teeth and I make sure I brush/floss more than once daily but I can tell this medication is drying my mouth out.
• Weight Fluctuation - I made a meal plan for this treatment because I saw where some people gained upwards of 30 pounds taking it.  The first week I lost 5 pounds and then gained it immediately back and now am back down 2 pounds. 
  
• Hot/Cold Flashes - I am sweating a *lot* and generally have to sleep on top of the blankets at night

I don't get lab work until my 8 week regimen is over, I prepared myself to not work as I travel for work, during this time just as a safe measure.  The side effects suck to put it lightly - especially the mental effects - but not enough to ever stop taking this.  If anyone else wants to add more of a bulleted list to this of their side effects and if they worsened or got better as the treatment went on I kind of wanted to make this to the point type deal and see if anyone had similar experiences! Good luck to everyone who is going through treatment!

[Type0Negative]

Dear Khristy

The good news is that for me the side effects significantly improved after 4 weeks. Initially I thought the pills had different medication doses (bad manufacturing), because some days I felt no side effects, other days the medicine would kick my behind.

Insomnia: Take medication in the morning. Make sure it is exactly same time. I was taking it at 11 am. I don't have very good sleep but I was sleeping ok. Also I don't take any other medications. If you take naps during the day, it would make it harder to sleep at night.

I did not feel fatigue. I felt stimulated. It was not pure stimulation, but at some point I was thinking, "If this drug fails to treat Hep C, it may have some street value".

I had one major hearache, then it did not return. Too much water can be a problem too.

Mood: I noted sinking about death and dying almost daily. It was not in a sense that I dont want to live or that my life is bad, but more as trying to mentally prepear myself that it is ok if I have to die. It was like I felt- I could die any time from taking this medicine and to control anxiety, I had to comfort myself with thinking that dying is not that bad.

I did not have any rash but some one else in our Mavyrett thread had serious rash.
He reported that moisturisers and steroidal crteams were not very effective.

Constipation. This medication leaves the body almost 99% via stool. I was worrying that if I dont go one day, I will feel toxic because there will still be previous dose of medicine in my system. I used Myralax. I heard some complained that Miralax causes blured vision.

Many medications affect pupils. I did not notice changes. However- I felt intoxicated. I felt like I have been getting high every day more than I would want to take if I was using it recriationally. Now this is important. Go outside on day light. Look on the trees. Do you see any changes in your distance vision? Initially I thought I was "High". I felt better inside, but outside I could visually see the Buzz. I thought this is just part of medication effect and that it will go away when treatment is over. It DID NOT GO AWAY. When I completed the treatment, my head cleared, the cloudiness resolved but my vision remained blured. First few weeks after treatment I was panicking. I said, "Am I doing to be "high" all my life from now on?" The visual disterbance did not go away. I lost some of distance vision. I am ok indoors, because everything is close, but outside, world looks different now. I have to say that after 10 weeks post treatment, the blured vision slightly improved in one eye. The other eye is blured. I went to specialist twice. He ran all kind of tests and told me he does not see any changes that would be present with optic nerve toxicity: my color vision and visual field are intact. But I dont see the same.

I did not have joint pain, hot or cold flushes or dry mouth.


Weight: I did not gain anything. I lost maybe few pounds. I was eating strictly every 3 hours around the clock. I would even get up at night to put something in my stomach. I noted that after 3 hours if I forget to eat, the side effects will increase.

I felt dizzy once after a shower- I thought I will pass out. I had to lay down and then eat something. Take warm and very short showers and eat regularly.

I had increased heart rate and chest pains. Increased heart rate in the morning, then it would mellow down after I take medication, then drop in HR to low (like 60-70), and then back to 100-120 in the morning.

The side effects got less significant by 4 weeks. It does gets better.
 But I would recommend to go and check your vision to establish baseline. If you feel high and it affects your vision, it may not resolve. Otherwise- it does gets better, especially when it over. 

[jschmoo123]

khristy - I just saw your blog. The doctors told me I likely contracted HepC in the early 70's while in the military driving ambulance when the use of rubber gloves wasn't a thought. I just finished Mavyret when you started. I wish I would have seen your blog earlier. I would have suggested you switch to Harvoni. I hope your rash went away. It has been 3 months since I finished treatment and mine has not. I had a culture and a biopsy done and now I have eczema. An allergic reaction to the medication. Do not expect Abbvie to help you either. They take the money and run when you have a problem. When I begged for help because of the severe itching and rash they thanked me for the information so they could add it to their side effects. Absolutely no advice or direction. I guess by law that's all they are required to do. I will continue to seek out Mavyret and HepC blogs and share my thoughts. I would NEVER recommend Mavyret to anyone. I don't know if the makers of Harvoni stand behind their product, but I haven't seen side effects like this mentioned by Harvoni users. And for anyone that is just beginning Mavyret, I would recommend switching to another drug; especially if you're starting to experience itching in the slightest bit. It never went away for me and progressively got so unbearable I did not sleep for days and had to see doctors and dermatologists until I finally got a shot of Kenalog to minimize the itching.

[Type0Negative]

jschmoo123, Mavyrett affected my vision. When I told the research coordinator, they promised to report it and to get my records from ophthalmologist, but I did not get any interest or attempt to investigate it from the drug company. My doctor, who in the past was very attentive and spent lots of time talking with me about research in HCV field, suddenly became short with me, told me- he will not discuss changes in vision and told me he will only report objective data that came from specialist, not my subjective experience. The specialist first said- it is possible and he can't rule out adverse reaction, but on follow up visit he told me I am just getting old and my changes in vision over 8 weeks are simply aging (I am in mid 40s).   

[jschmoo123]

TypeONegative - Funny, I wear glasses for distance and would take them off to read. Now I can no longer read well as it has become blurry.  It happened to me when I was about half way through the Mayvret treatment. I read that it was normal and would return. I finished treatment in mid June 2018 and my reading vision has still not returned. I initially requested Harvoni but the doctors told me no....go with Mavyret, it's very good. NOT! I am beginning to wonder what the profit margin is for these medical professionals. I am telling anyone that will listen that Mavyret is not worth the side effects and refuse it all costs. My eyesight has diminished, I now have eczema I can't get rid of and I constantly get bouts of itching. Most importantly, ABVIE has been absolutely no help. I have begun telling people about ABVIE as well and that I would NEVER trust any of their products. All they seem to want is the money and in my case, another guinea pig to test their product. Worst mistake of my life. PLEASE, anybody that reads this, if you have HepC go with Harvoni. It has been tested and used far more than Mavyret. Just read the side effects and you will be convinced. I made a huge mistake. I no longer have HepC (which I never knew I had and always felt great) but now I have ongoing problems caused by Mavyret that it appears will never go away. I am 62 and was in excellent shape but slowly feel myself declining from this treatment. SCREW MAYVRET AND ABVIE!!!!!