The Depression Road Goes On Forever and The Party Never Ends *

Hepatitis C and Depression: I should be weary of this subject, but I’m only weary of depression. Thirteen months ago I completed a clinical trial for Hepatitis C. I was cured, c-u-r-e-d.

 GS-US-256-0124-A Phase 2B, Trial Evaluating Using Combinations of Oral Antivirals (GS-5885, GS-9451), PegInterferon Α and Ribavirin In Treatment Experienced Subjects  With Chronic Genotype 1 Hepatitis C Virus Infection

Last month I went in for my one-year follow-up visit where it was confirmed “No Virus After One Year!”.  Okay, maybe it’s true.  Maybe. I answered questions about my mental well-being.  I felt great and said so.  Later I remembered that I felt great because I was on two anti-depressant drugs, Lexapro (escitalopram)  and Wellbutrin (bupropion XL) with a splash of trazodone at bedtime.

BTW, I think everyone should speak about their antidepressants. I know there’s a bunch of us out there.  Just look at the sales $$$.     I worked for Lilly when they launched Prozac.  Rather than get it for free, I paid at the retail pharmacy because I didn’t want anyone to know.  That’s Bull Corn.  Bull Corn?  Where did that come from?

Where was I?  So two weeks ago, my psychiatrist,  (who treats Hep C patients) began to decrease the Lexapro with the goal of decreasing my antidepressant load.  My scaffolding crumbled under me and I spiraled into an anxiety-ridden, weeping insomniac in just a few days and nights.

I've come undone
I’ve come undone

.So,  I am miserable and looking at increasing drugs.  My first thought was that I am FUBAR (Fucked Up Beyond All Reason/Recognition/Repair  military slang) and that’s that.  My second thought was to work closely with Dr _ who assures me that this is a minor setback. Minor to someone else maybe. How quickly I become self-absorbed.

Now, after 400 words, the reason for this blog.  Today I received this article from  Medscape.

 Psychiatric Treatment Considerations With Direct Acting Antivirals in Hepatitis C   Sanjeev Sockalingam, Alice Tseng, Pierre Giguere, David Wong
BMC Gastroenterol. 2013;13(86)

(Newly published articles in my areas of interest for August 9, 2013: Medscape)

Can’t resist the title can you?  I know I can’t.

Being a Doctor of Pharmacy and a scientist, I love articles like this. It takes my entire nineteen years of schooling to follow the data dump. Gastroenterologists and Psychiatrists won’t read this article. It falls into a discrete category that gets filtered out during literature searches. DAAs means previrs ( boceprevir / telaprevir).

Abstract

Background Despite recent advances in hepatitis C (HCV) treatment, specifically the addition of direct acting antivirals (DAAs), pegylated interferon-alpha remains the backbone of HCV therapy. Therefore, the impact of DAAs on the management of co-morbid psychiatric illness and neuropsychiatric sequelae remains an ongoing concern during HCV therapy. This paper provides a review of the neuropsychiatric adverse effects of DAAs and drug-drug interactions (DDIs) between DAAs and psychiatric medications.

Methods We conducted a PubMed search using relevant search terms and hand searched reference lists of related review articles. In addition, we searched abstracts for major hepatology conferences and contacted respective pharmaceutical companies for additional studies.

Results Limited data is available on the neuropsychiatric adverse effects of DAAs; however, data from major clinical trials suggest that DAAs have minimal neuropsychiatric risk. DAAs can potentially interact with a variety of psychotropic agents via cytochrome P450 and p-glycoprotein interactions. Triazolam, oral midazolam, St. John’s Wort, carbamazepine and pimozide, are contraindicated with DAAs. DDIs between DAAs and antidepressants, anxiolytics, hypnotics, mood stabilizers, antipsychotics and treatments for opioid dependence are summarized.

Conclusions Although DAAs do not add significant neuropsychiatric risk, the potential for DDIs is high. Consideration of DDIs is paramount to improving medication adherence and mitigating adverse effects during HCV therapy.

So the abstract  (I saved you from the entire article)  kinda says: We don’t know enough to draw any conclusions so we caution you when using any drugs metabolized by the liver, including antidepressants. Terms: pharmacokinetics (where the drug goes in your body and how your body changes it to water-soluble (pee), or fat-soluble (poop) to get rid of the drug:  pharmacodynamics , what the drug does to your body to heal you and how it does it. This is for one drug. Think about a bunch of drugs where the liver and maybe kidneys do not work well.  There is a traffic jam and a couple of fights at the entry to your liver and the drugs build up in your blood.   Crash.

This is a year of my life

CPY 450 System, took me years

And so I say to you what any good or bad pharmacist would say:  “Caveat Emptor”.  Actually,  the pharmacist will put warning stickers all over the bottle and give you a packet of small print information.  Then she will make you sign that you have been counseled.

Beware the Jabberwok

Caveat Emptor

* A nod to the awesome Robert Earl Keen Jr. http://www.metrolyrics.com/the-road-goes-on-forever-lyrics-robert-earl-keen.html

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/HCV_Neg.pdf  This is awesome for those like me.

http://www.medscape.com/viewarticle/807927?src=wnl_edit_tpal&uac=190805DY

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Where Is Reset? Life After Hepatitis C Treatment

 After four  years and two rounds of Hepatitis C treatment, how do I reset my life?

In 2009 I enrolled in treatment round #1 for Hepatitis C.  I was a subject in a drug trial.  As it turns out, I received standard of care: Interferon and Ribavirin.  This didn’t wipe out the virus, but did wipe out my career.  Between the emotional, psychological and physical melt down, my performance at work  never recovered.  In fact my performance began to slip a couple of years before that.  Depression coupled with anxiety along with tiredness from hep C, career and  school  left me mildly catatonic.  Oxymoron?

After round one, from which my career never recovered, I retired early.  I was that rare bird, a person with a retirement package, and I wanted to keep it.  This was in 2010-11 when pharmaceutical companies were reducing employee numbers by 30-60 %.  If sales aren’t up, expenses must come down.  Employees are expensive, especially when you think quarter to quarter. Human Resources (Man Power in my early days) would never say it, but a disproportionate number of older/higher paid employee positions went away.  A vague yet popular term was “you are not on board”  meaning you are not 110% aligned with new management thinking. Your resistance to any part of process is slowing us down.  Younger business/science professionals with a great deal of ambition and no scientific historical perspective are cheaper and quick to get “on board“.

I agree, I was not on board.  The new direction was not science. The new direction was “scientific marketing”.  WTF is that?  BTW, I used to love my job, absolutely love it.  I had the good fortune to work with  AZT, the first HIV drug and with Ritonavir the first antiretroviral for HIV.  I saw people begin to live with HIV. Ritonavir is now being studied for hepatitis C. I worked with the first oral anticoagulant that didn’t require blood monitoring ( this drug didn’t make it to launch after millions of dollars in research) and the first proton pump inhibitor for GERD.  I put teams of field scientists together in both Hemostasis and Infection.  I developed their individual and group skills.  I was good at it.  I wasn’t as good at managing up the ladder once science got squeezed by sales.  So why can’t I just get on board elsewhere?  Because I have to live with myself.  Whew, too many I’s in that paragraph.  I am trying to learn to relax and live with the debt bomb that will gobble up my little anti wolf money.

English: AZT (zidovudine), the first medicatio...

English: AZT (zidovudine), the first medication shown to be effective against HIV. From the National Institutes of Health website (http://www.history.nih.gov/NIHInOwnWords/docs/page_05c.html). (Photo credit: Wikipedia)

When I was nine, Dad would drive 70 miles to Indianapolis  at 3 AM and pick up fresh produce, then back to  Al Monger’s fruit market.  I  remembered that name because Dad called my dog a mangy mongrel.  I pictured Al Monger as a hound dog  (Mom lost my dog later while drunk.  I cried about that dog for years).  Dad’s pay in part was produce.  He and I would drive through “rich” neighborhoods in an old pick-up truck and peddle watermelon from the back.  We cut plugs from a melon for house wives.  When one turned up her nose, he would say “That woman doesn’t know what trouble is”  And I thought yeah, be poor like us, then turn up your nose at a watermelon.  At day’s end we took the rest home.  It was July and Mom was pregnant with my brother.  She ate watermelon all night long.  We lived in an apartment upstairs with pink  lace plastic curtains and no screens. I knew we hit a low.  She always looked down on plastic curtains and she even had them tied in a knot.

On really bad broke hang-over days, Dad would get a pint of aluminum paint and a pair of cheap gloves.  He made a handle from a coat hanger and ran it through his belt.  We drove through rich neighborhoods and picked out a rusty TV antenna.  We parked on the curb, not the drive. I sat in the truck looking out the window.  He always had a smoke on him while talking to the homeowner. He told the lady of the house he could save that antenna.  After the first one, he convinced neighbor ladies.  For $5 he climbed the wobbly three-sided antennae and painted  up and down streets.  That night we would be “rich” and he would look like the Tin Man from the shiny paint.  One time he said “I sure am thirsty, you want a root beer?”  Are you kidding, heck yeah.  We got ice-cold mugs at the A&W.  I had to gulp it down.

Laughing, he said  he had places to go and people to see.  We’d stop by the store for bread, bologna, milk and Camels.  Maybe Hellman’s too.  A little jar.  Everything we  bought was in the little jar,tube, bottle, box or scoop.  I suggested to Mom once that we could save money by purchasing bigger quantities.  She straightened me out on that thinking.  Only rich people could afford to buy big tubes she said.  I figured out later that her “rich people” were the middle class.  I watched “Leave It To Beaver”  and wished I was in that smiling rich family.  The hedges were trim, mom vacuumed and dad came home on time every night sober.  It was like we lived in a place called Pooristan.

I still love saddle oxfords

If bill collectors came to the door, Mom would push me to tell them she wasn’t home while she hid in the hall.  They looked straight at me with eyes that said “You are lying little girl”.  We shared that moment.  I swore that I would never have the wolf at my door.  I determined to get a good job, maybe teaching, and get a used station wagon, maybe red.  That’s why I am on my 3rd red Volvo. Maybe.  Never did get a station wagon.  Still love watermelon.  Grew my own this year.

From about age six, I collected pop bottles for pennies.  I went to Cozad’s Grocery and anguished over what candy to purchase, favoring slow treats like a Sugar Daddy. If other kids collected bottles, I would cash them and take a cut of the money. I had the corner on the market. Other kids weren’t even allowed to leave our street. From age ten, I took in ironing, babysat brat kids while parents worked second shift, cleaned houses, anything to get money for school clothes and saddle oxfords. Of course in my house I washed dishes, cleaned house, did laundry, then hung it out.  There was nothing wrong with that, my mom worked in a factory everyday.

I still love saddle oxfords

I babysat my brother every summer from age 11 when he was two. In exchange Mom would  get me “something nice” at the end. Once it was my cousin’s used record player.  I couldn’t believe my good fortune.  I went downtown on Saturdays and spent the afternoon choosing a 45 rpm record.  It was 45 cents.  I played Motown non-stop. When I was fourteen I got a blue Princess Phone,  which was good because Dad always pulled the house phone out of the wall when Mom tried to call the police on him.  Phones didn’t plug in those days, the phone man had to come and repair it.After a lifetime of pushing myself to do better, the wind stopped blowing. Now that I spent my life getting out of Pooristan, can I enjoy retirement or will I fear the wolf at the door?  I have been thinking a lot about that.  And I’m only 4 months past treatment number two for hep c.

I did the craziest thing today, in response to a head hunter’s call, I sent in my resume  for a position as a Medical Affairs Director (managing a team of liaisons and of course managing up).  It is a small biopharm company that focuses on orphan drugs (rare diseases).  What was I thinking?  I don’t want to work that hard or long.   IF I talk with them, I’ll price myself out of the market.  A former colleague contacted me last week about some part-time project work.  After talking with him, my skin crawled from all the business bullshit slang.

How would I give back to the world if I could do anything?  I got all this education and pretty good team management skills, but low tolerance for bullshit.  That rules out about everything. I would like to help kids in difficult circumstances, but I remember the church ladies trying to help. No thanks.  My childhood stuff isn’t completely in the closed file.   I wouldn’t mind making a little money but that isn’t the “it”. Suggestions?

Hepatitis C: Does “No Detectable Virus” Equal Cure Or Is It Smoke?

Am I cured or is it just smoke?

Hepatitis C cure?

 If my hepatitis C virus test shows non-detectable virus 6 months after the end of treatment, am I negative?  Will I  stay negative?  Am I cured?  In the recent past only “non-detectable virus” was declared. Now doctors are adding “cure” to the jargon.  This is with the addition of Incivek and Victrelis, and depending on the discussion.  No two clinical trials are alike and so Hepatitis C researchers use (they say utilize) sustained viralogical response (SVR) to compare outcomes.  Most trial design is by the company developing the drug.  One goal is to ask the study questions just right to get scientific and marketable answers.  “GodZillapravir had a non-detectable  SVR at weeks 12 and 24 in 85% of patients including those with mild to moderate cirrhosis”. “KingKongViracide cleared Hepatitis C virus in 94% of patients at 24 weeks including children 12 to 18 years of age”.  Which is the better drug?  You can’t tell by the claims because two different patient populations and time lines .  But they have  SVR in common.  That is why researchers use SVR.  BTW I made up the examples.  Now don’t get down on industry just yet.  Academics are accountable to department heads and medical journals.  That can be as powerful as a stockholder.

Industry is different: Stock holders in towers

When it comes to patients , the word “Cure” has emerged because research shows that if you have no detectable virus after six months, the chances of Hep C returning is about 1-2%.  And the argument is that it was never cleared, just so low that it was undetectable.

So with Hepatitis what does this mean?

Successful treatment for Hepatitis C hasn’t been available for long, so doctors are just starting to understand the long-term outcomes.  Do cancer survivors say cured?  I think they say  cancer-free for 2 years, 5 years, etc.  Am I a Hepatitis C survivor or am I cured?  Is it still a pre-existing condition?   A research site, not insurance, paid for my treatments.  But my medical records say Hepatitis C.

So at 24 weeks can I tell the insurance company that I no longer have Hepatitis C?  I can’t find the answer to that question without talking to them directly. I will wait until 2014 (I think that is the year) when they cannot cancel me for pre-existing conditions.  Insurance politics are so confusing, I am not clear if that stipulation is on the potential chopping block.  In speaking with my mental  Dr, I realize that I do not have confidence in my treatment and I am waiting for it to come back.  I am at 4 1/2 months post treatment.   I have been Hep C positive for so long, I don’t know how to have a future in which chronic debilitating illness isn’t a key player.  What is the world like with only mild hypertension and chronic but manageable depression?

Below is a good article for defining end-of-treatment terms, although it is a bit dated.  Newer drugs are not addressed but the terms are the same.

 Hepatitis C: What Is a Sustained Virologic Response or “SVR”? (From Charles  Daniel, former About.com GuideSVR) 

SVR is the closest you’ll get to “a cure” for hepatitis C.
 Sustained virologic response, or SVR, is the goal of hepatitis C treatment.  Conventional treatment (a combination of interferon and ribavirin) doesn’t  necessarily eliminate the hepatitis C virus from your liver. It can, however,  suppress the virus to undetectable levels for an extended period of time. In clinical language, this is called a “sustained virologic response,” or sustained  response. It means that during the six months after you complete treatment,  there is no detectable hepatitis C virus in your blood.                                         SVR is a good thing.
Studies have shown that with a six-month SVR (which means no detectable virus in your blood for six months after finishing treatment), relapse occurred in only 1-2% of patients. So, for every 100 people who finished treatment and attained SVR, the virus will return in only 2 of them. However, for these people, the
virus never really left. The medicine was able to eliminate most of the virus (so much that medical tests couldn’t detect it), but after treatment ended, for whatever reason the virus was able to continue replicating itself.

Early SVR is beneficial
Since the liver has incredible regenerative ability, achieving SVR
 as quickly as possible is important. This is important because some liver damage can be reversed if the cause of the damage is removed. After SVR is reached and depending on the degree of damage from the virus, the risk of hepatocellular cancer is reduced and about 25% of people see an improvement in fibrosis.

SVR compares one treatment to another. For those in treatment, SVR is the goal. However, for physicians and scientists researching new hepatitis treatments, SVR is also used to evaluate new medicines and compare them with proven therapies.
 For example, depending on the genotype, treatment with interferon alone usually achieves SVR in 15% of the patients. When interferon is combined with ribavirin in the same genotype, SVR is increased to 70% in some people.

Jana L. Lee, R.N., CCRC Clinical Research Nurse St. Luke’s Episcopal Hospital Advanced Liver Therapies, my practical answer source and demon fighter.

http://www.hepcadvocacy.org/factsheets/HepatitisC.pdf

http://hepatitis.about.com/bio/Charles-Daniel-37713.htm

Keeping Up Appearances At The J. O. B. When on Hep C Treatment

Keeping up appearances where you get your paycheck

Look forward and busy so they won’t notice your missing brain.

Always carry your computer in a back pack to keep from falling sideways and jamming the rotating doors.

Don’t forget your lipstick

Try to avoid one-on-one conversations.  You are only bringing part of a person to the table.

Wear a lot of pockets.  If you lose something you probably still have it.

Wear dirty clothes if need be because you are pretty sure they match.

Check to see if your shoes match.  Are they at least the same heel height?

Carry only one bag or spend all your time looking for the other bag.

On airplanes, don’t put anything in the front pocket. You will forget it.   Just look at the pretty magazine pictures.  You aren’t gonna get anything done anyway.

If you must sit in a meeting all day:

  • Answer the easy stuff so maybe they wont notice the space where you formerly housed your brain.
  • Shut off that ringer now.  Your voice saying “Answer the phone!” sticks in their minds.
  • If you cannot avoid giving a presentation, you will look like a fool.  Just go with it.
  • When the non-sequitors are upon you, sew your mouth shut.  No exceptions.
  • Sit between two people who won’t benefit from your out-of-body experiences. The sharks can smell your crazy.  They will cut you and swim away.
  • At lunch talk with those who are less familiar with the previous you and stick to subjects like their kids.  That way words can just fall out of your mouth.
  • Avoid those who get under your skin.  Your skin is thin to non-existent

Don’t look for your brain in public places unless it is in the bathroom stall.

Look for a lack of urinals to confirm that your are in the correct public toilet.

Don’t volunteer for anything at work.  You are functioning at about 40%.  It isn’t fair for project mates.  And they might cut you and swim away.

Try not to cry in front of your boss.  Nothing good comes from that.

Try not to cry with the boss on the phone.  He may offer to pray with you.  Too weird.

Six weeks after you can no longer pretend to keep up appearances, start the medical leave process so you will have a job to which you can return.  The medical people at work will not understand your disease or treatment.  Be prepared to provide information.

Seek out a therapist who knows something about hepatitis C and treatment.  Ask your Dr. to recommend one. The medical leave people will want documentation of your coo-coo ness.  Hopefully your insurance covers this therapist.  Mine did not.

Keep a calendar so you will know when to renew the medical leave.  Let medical records and Dr.’s reports speak for you.  You will not represent yourself well.  This should work in your favor but doesn’t.

Before returning to work, catch up on the rumor mill with those in the know.  Don’t forget,  they are trying to get the scoop on you too, and your business shield is down.

When you do have to return to work, take on the minimum load.  You left under a dark performance shadow and your uptake will be slow.

Your boss will ask if you are at 100% now.  They always like percentages.  Be as honest as you can.  But don’t be stupid about it.

Memorize a script for those who ask where you’ve been and how you’re doing.  Stick to the script.   They are curious, but are mostly thinking about themselves.  Take advantage of this and ask about them.

As poor performance reviews roll in, pray for a retirement package. Between your medical leave and age,  Human Resources will hesitate to fire you.  But, they can make it uncomfortable.  To them you are a resource, not a person.  That is their J.O.B.

It is tough when you have been a strong performer. It’s okay.  It’s only your ego.

Look at LinkedIn.  Can you put the armor on to go back into the crusades?

Start a blog on hepatitis C treatment recovery.  Think about what is next.