Drinking while being treated with ribovarin/interferon

[TONIBUG]

I have a friend that is currently undergoing treatment for Hep C. She is on in her second month of the treatment. Right before treatment her doctor sent her to another doctor fowarding all of her information, She is geno type 1, what ever this means, I do not understand all of this.
  To try to make this short she is frusterated horribly. The new doctors office has never met with her one on one other than to give her the starting package. She has never even met the doctor. She goes once a week for blood work and finally called and demanded to speak with the doctor whom I suppose reluctanly got on the phone to tell her that so far in the first month she is not responding.
   She is destraught. Any way she has now drank several times and is losing all hope. I want to help her but do not know what to do. I know that treatment and drinking are not compatible but is it harmful? Will it ultimaltely hurt her other than the obvious LIVER situation??? Any thing someone could tell me would be appreciated!!!!

[merryBe]

a lot of folks do not respond at first or as quickly to the meds. It does not mean she could not get to undetectable and later to SVR sustained viral response. It only means she is a late responder and will need to extend treatment to achieve this.

I would ask to be fit in on an emergency basis to talk to my doctor if given this news.
There is plenty of evidence late responders can cure, and we will happily provide that info to her.

As far as the drinking goes, any drinking could bring on rapid  liver failure while on tx drugs. It's akin to suicide for her to start drinking with these drugs still in her system.
I'd encourage you to help your friend get to a 12 step, a church group, and a therapist ASAP.
I was able to present my case for continuing treatment to my doc even though responding late, and so have many in this forum. Any chance of getting a doc to go along with this plan are shot though if they find out she's been drinking.
Like everyone has said, she might as well be playing russian roulette...its very dangerous.  My heart and prayers go out to your friend.

mb

[nygirl7]

Also if she is this distraught her doctor should be aware and putting her on antidepressents.  That is one of the reasons we hve to be closely followed by a doctor - depression/anxiety are potentially EXTREMELY dangerous side effects.

I too advise get copies of all of the tests and find a new doctor.

If your friend can come into this forum and talk to some people it will help them alot.  HepC is a VERY isolating disease and we understand that full well.  Without the guys in here to prop me up and hold me together I doubt I would have made it all the way through. Just knowing that people understand what you are going through sometimes can be the most important thing.

In short I agree with the guys above you a great friend.............wish we all had friends as wonderful as you!

(I won't even address the alcohol issue because the answer is SO obvious - unless she's doing treatment for nothing that is).

BEST of luck to you both!

[cajunldy]

Your friend is very lucky to have you on her side.  What a very True friend you must be.  Sounds like she is going to have to take control of her situation.  Doc won't talk to her, tell her to insist on conversation with the doc.  And, Lord, get her off the alcohol.  This tx is nasty enough, I just can't imagine it with an alcohol mix.  How horrible that must feel.  Help her get organized with paperwork, cbc, any other type blood work.  You may help her keep organized.  This tx gives you brain fade, some days did not know if I was coming or going.  Get a journal or organizer book, sticky nots to post all over not to forget things.  

Good Luck,
Keep us posted on updates
Cajun

[IAmTheWalrus]

Trish covers it very well.

I would add that TX causes a lot of side effects, not leastly mental effects like depression. I would add that depression is the number 1 cause for discontinuation of interferon/ribavirin treatment. She needs a doctor that will pay attention to her needs while on TX. Many need help with the side effects and should certainly be monitored for depression as well as lab results.

You are terrific for looking out for your friend. She is lucky to have you.

Brent

[Trish77]

Please have her doctor clarify what he means by "so far in the first month she is not responding".  Does he mean she has not cleared the virus yet?  Or that there has been absolutely no change in her viral load?  I'm thinking that it means she still has viral load but please get this clarified with her doctor.

Also, I would suggest that she get copies of EACH of her blood tests.  Get the viral load results by asking for copies of her PCR tests.  Get copies of *everything*.  If she's not getting good communication, you can post the results here and we can do our best to help you understand them.

What are her current HGB and ANC (Absolute Neutrophil Count) numbers?

I'm wondering if she had a biopsy before she started treatment and what stage / grade she was pegged at?  If she doesn't have her biopsy results and she doesn't know what they are and she HAD a biopsy, have her doctor give her copies of those too.  The MAIN thing she wants to know is what Stage / Grade she is at.  This is the current extent of liver damage she has.  Pretty much all of us with HCV have some amount of liver damage, it's a matter of how much.  This comes into play when making ongoing decisions either to treat or how to handle decisions as one deals with the various scenarios that can come up as treatment progresses.

As a Genotype 1, the very BEST response is to clear by Week 4.  However, clearing by Week 12 is the next best thing.  Assuming what her doctor meant is that she hasn't cleared yet, tell her she has TIME yet to clear the virus.  It ain't over yet and tell her that and tell her to stop drinking immediately and get her fight back on like you know she can.  

I'll leave it at that for now.  Good luck to both of you.  Good on you for being there for her, I'm proud of YOU.

Trish

[Michelle867]

Tonibug,
I just wanted to say that your friend is very lucky to have you there for her.  Treating is very trying on anyone and is made even harder when you can't rely on your doctor.  Try your best to discourage her from drinking and to help her get some answers.  We all need support when dealing with Hep C and it's great that she has your support.  Hang in there and best of luck.

[TONIBUG]

NO,  quite the opposite actually. My friend has adhered very strictly to her medication schedule. She takes her meds twice daily and as a matter of fact I am the one that gives her the injections on each Friday. I work for a hospital and have a lot of access to imformation. However I do not specialize in anything that deals with hepatitis. Her initial doctor was a Hepatologist and after closing his practice to work solely in the hospital setting he fowarded his patients to a Gastroenterologist. Hoevever this is where the problems have started. She is a person that has completely turned her life around and I can say that I am proud of her. She has struggled to make it this far, but she now is struggling for knowledge on just what to do. Believe me I know she is wrong I just want to get as much imformation as possible so that I can help her with some facts. Thanks for all of your help.

[jankar]

Its great that she has someone like you looking out for her because she really could be suffering effects from the treatment as well as all the problems with the doctor.

Hassle the doctors endlessly - ring and phone and email, sit in the office - don't let them get away with it.  If you have new questions, ring back and hassle again.  This is very complex treatment and your friend needs to understand what is going on so she can ask for the right help.

Read as much as you can first but if you don't understand it all right away that is Ok - keep on asking the doctors as you need to know more.

If hassling the doctors doesn't work, get all your paper work and go to another hepatologist.

I am a great believer in the - I won't shut up you can't make me approach' - that my sister taught me when she was 21 and screaming at her boyfriend in public and he was embarrassed.

[FlGuy]

I would guess that if she is distraught, not followed properly by the doc and drinking several times since starting treatment that she is also not adhering to a strict medication schedule.  Staying with the doses and timing for all the meds is extremely important. Coupled with the drinking, it's a potential disaster.  Your friend needs help, probably more than one kind of help.

[lalapple]

here is a really good website to learn about hcv:

hcvadvocate.org  and go to fact sheets.

[lalapple]

um 4 words :  not a good idea

if her doc *****, then she should switch or take control herself.  i'm currently 19 and treating.  i've only met my hepa doc once before i started on tx, and ever since i started, my every clinic visit has been met with a Physician Assistant (someone to play doc) and a clinic assistant who really pay no attention to me.  don't get me wrong, i'm with a big clinic and was considering to switch until i realized that i was undetected by week 12 and thought it's probably not the best idea to switch in the middle of tx.  so i decided to take control myself.  doc and clinic people rarely pick up on patient calls here, so just leave a message and don't expect them to call back, if not, then call again and again until they pick up.  remember, the patient is the consumer and the doc is there to provide service to the consumer.  there is no reason to have a person get paid professionally without providing proper professional service.  also, she needs to understand and do the research on her part.  don't just go into tx without knowing what it can do to you.  if you have a question that the clinic can't answer immediately, try posting it here or finding it online.  know what you need to do as a patient, it is your health and i personally won't trust my health to anyone but myself.  don't expect the doc to do everything bc not even their assistances can.  just bc the docs don't care about you, doesn't mean you should abandon yourself, drinking just makes things worse, if she's going to drink during tx, then might as well stop treating altogether.  honestly, what is the point?  it's really disappointing to me that people sometimes make bad choices when offered a good chance.

best of luck

[jmjm530]

Sorry about your friend. Two issues here -- present treatment and the drinking.

Starting with the drinking, no one here (including myself) will say anything positive about drinking during treatment. It's ill advised and could make the difference between a successful and unsuccessful treatment, but I wouldn't go so far to say that because she "drank several times" that it's all over for her in terms of responding to treatment.

So, that aside  the other important issue is no communication with her doctor and what apparently is non-response at week 4.

If she truly is non-responding at week 4, depending on the amount of liver damage, she potentially has several options including changing the treatment approach or even terminating treatment to fight again with better odds with better drugs.

Problem again is the no communication issue. What she should do is get her own copy of all the charts -- blood work, ultrasound, biopsy report, treatment regimen, etc Based on that, and in consultation with someone in the dr's office (hopefully) she will have a better handle of what is going on. I'd also strongly urge an outside consult with a liver specialist (hepatologist) at this point. Hepatologists know more than gastroenterologists and can usually be found at your larger, teaching hospitals. Lastly, she might want to see a shrink if not already to help deal with this difficult time.

-- Jim

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