what happened to my body after harvoni?

[jmoonshine]

thanks to this forum, i feel like i can hear other people's stories and have a place to be heard.  finally.

from what i can recall, i was infected with hep c genotype 1 & 3 back in 2006/2007 during my early 20's while i was an active IV drug user.  I got sober in 2013 and treatment was still not an option for me due to early recovery issues and emotional instability.  It was in late 2016 when my insurance company lifted the restriction of treating phase 4 chronic patient and opened to treating all hep c patients.

Perhaps I should have done more thorough research about the effects of Harvoni during and post treatment, but whomever I spoke to about it said things like 'poof' or 'magic' or 'completely gone'. 

I began Harvoni in Nov 2016 and finished late March 2017.  I did feel the pull towards a 'nap' or 'rest' during this time (which is very rare for me) and nausea (for which I took reglan) and some headaches, but it was totally manageable. 

Late April 2017, I contracted what seemed like a cold - but it persisted for over 10 days so I sought the doctor at urgent care, who said it sounded like I had the flu.  My symptoms were coughing, congestion, mild fever (99-100), body aches, fatigue.  My partner caught a seemingly similar cold about a week into mine, but recovered in about 5 days.  Witnessing this and still sick, I called in the hospital when another doctor said I have a cold and gave me a round of Zithromax to take.  Congestion seemed to get better but basically nothing really seemed to get better.

What's the worst is the fatigue.  It isn't depression but it's like the power suddenly goes out.  No functionality.  My window of function is 2-3 hours, which I try to stretch with resting in-between and exercise to like 4-5 hours.  It isn't a fatigue that I can push through with caffeine or sheer will.  The only way I can describe it is that from an loaded bank account of energy, I've gone to a $10/day balance.  I don't text much anymore because it costs 'energy money'.  I've called off work indefinitely in fear that I am contaminating my students or that I am prolonging my whatever-this-is. 

So 7 weeks into it, so far I've been worried this is an auto-immune trajectory, chronic fatigue syndrome or... the cough and 'cold' seem to have never left - every phone call to the hospital is like: "i can't describe it as 'worse', 'better', or 'the same'.  my health is not a linear function."  everyone seems to be quick to diagnose, but uncaring to investigate.

In my own efforts, I've been taking Lysine, Echinecea, Acetyl L-Carnitine, Zinc, Vitamin C/B12/D, gluten-free, so much ginger, limiting stress, sleep all day, exercise, meditation, bedrest... but there are only so many Netflix series I can watch without getting into action about what I can do to help myself.  Finally threw a tantrum loud enough to get a phone appointment with my physician this coming week, who told me a year ago my liver wasn't 'bad enough' to treat. 

But the frustration I feel about not knowing what to expect post treatment, or that the endocrinologist basically fell off the radar after the initial prescription, that no one seems to CARE and just wants multiple choice answers or these drive-by diagnoses quick to prescribe is profound.  Perhaps I'm a bit naive but... sigh, just have had no space to express any of this elsewhere.

If I have to suffer, fine.  But I'd like to know why.

Anyway, I would love to hear anyone's experience/insights/comments/anything at all just to not feel so alone.  Thank you for reading.


julie

[KimInTheForest]

Hi Julie. Welcome to the forums! You are certainly not the only member here to post about these kinds of problems post-Harvoni. For some of us, our post-treatment problems were eventually diagnosed, for others not.

My suggestions would be:

1. Insist on a Complete Blood Count (CBC), and make sure you get a hard copy of all lab results from here on out if you aren't doing that already. If, for example, lymphocytes are high and other blood cells are normal, it can mean one thing. If lymphocytes are high and other blood cells (red blood cells, platelets, neutrophils) are low, it can mean something else. Any anomalies in a CBC should prompt a doctor to do further testing.

2. There has been some discussion of HCV clearance reacting Epstein-barr virus in some people. That too can be tested for.

3. I recently had what seemed like a never-ending cold/flu. Coughing was involved. It would subside, then return. This went on for about 3 months. It turned out to be bacterial bronchitis, and went away completely with 7 days of sulfratrim. So ask your doctor to check that possibility - bacterial infection. They linger in a way that colds and flu don't.

Good luck! Most people who have experienced post-treatment issues - even prolonged ones - are eventually getting better. Very hard to tease out what exactly is going on in these cases.

kim