new to board; fear of treatment

[beth999777]

Hi there,
I am so glad I found this board. I just wrote about our situation in reply to another post wrongly not realizing I needed to start my own post. My husband has had hep c for a long time we suspect. It was detected by a fluke like many I have read about. Right now, our biggest concern is the 3 drug regimen that was just presented to us by my husband's new doc.  For the last 4 or 5 years he has not been treated due to the mildness of the disease and his probable side effect of great depression. His psychologist recommended against treatment for that reason. Only this year has his disease seemed to show much progression. On the blood liver biopsy, he has been f0f1 for the past 3 years with low inflammation rates.  This year his biopsy moved him to f1f2 and the doc thinks he will need treatment next year. Having been told by the docs of the dreadful side effects of the latest drug with the 8 hour regimen, we are both quite anxious about treatment.  He has been doing so well with no illnesses.  If anyone, can help us understand the side effect question, we will both be grateful.  He is diagnosed with bipolar and is doing very well on his meds. We need to find out more about also about his new doc and whether he has a lot of experience with hep c patients. His former doc retired and we had to choose a new one from the practice.  Any replies will be appreciated. Thanks.

[pooh55811]

Beth, I am sending you a private message with a link. Go towards the top of this page, on the right, you will see Inbox. Click on Inbox and it will take you to my message.

[beth999777]

Thanks for the welcome and for your reply.
Beth

[beth999777]

I could not locate the archives at the header on this screen. I will research further though and try to locate them. Thanks for the suggestion.
Betj

[beth999777]

tHANKS FOR YOUR INPUT AGAIN, FRETBOARD. I APPRECIATE IT AND ALL THE OTHERS/
BETH

[fretboard]

Here's two videos to watch.  You and your husband will never know which sx's he will go through until you try.  He may not feel much at all, you never know.  If you look up at the top of this page you will see a health tools link.  I do not know about a daily log or where you were looking, maybe somebody else knows.  later


http://www.firstpost.com/topic/disease/bipolar-disorder-psychiatric-complications-of-hepatitis-c-therapy-part-2-video-zBI9kbERBn0-50847-1.html

http://www.youtube.com/watch?v=_ZGu3eFoF0g

[beth999777]

Thanks for your comment and the suggestion to check the archives.
One thing I was looking for was a blog or comment by a poster that revealed what he or she went through in a 24-hour period and through the week. Is this type of comment available in the archives? I found this post several days ago and now cannot find it.  I would really like to read a sequence like this.

Thanks again for your reply. Much appreciated.
Beth

[Revalation]

Following up on what Orphaned Hawk posted the very first and most important
thing you need to do is get a good Hep C Specialist (hepatologist) who is well educated in  Hep C.  Make sure the doctor has treated lots of HEP C patients. You don't a doctor who wants to treat a few people along with his regular gastro patients. That would be a BIG MISTAKE!!!

PLEASE UNDERSTAND HOW IMPORTANT IT IS TO GET AN EXPERIENCED AND KNOWLEGABLE DOCTOR BEFORE TREATMENT!!!

Now, that I've gotten that off my chest welcome to the group. There's a great group assembled here to help and support you. No question is too dumb or to difficult. Someone here will try to answer or point you to an answer.

REVA

[orphanedhawk]

My advice would be to find an excellent hepatologist with a lot of experience treating hep C.
Then if he decides to do interferon treatment, let the doctor help your husband get on the right ADs prior to starting.

There are promising oral studies without interferon.
However they are not a sure thing, being in the trial stage, and only available currently in trial.
It is however, an option you might want to further explore.

[jules2551]

Hi Beth!  Just wanted to welcome you to the forum.  Keep coming back and asking questions.  The pros will pop up and help you out.  It's amazing how much information they all have combined.  No question is stupid so jump in and ask.  

I wish you the best!

Jules

[fretboard]

"his psychologist was pretty adamant that he not start treatment about 5 years ago."

It's highly possible that the biggest problems your husband will have may be related to his mental health.  Not all bi-polars breeze through this tx as some have difficulty with the interferon.  I don't mean physical problems but problems in their head that is brought on by the interferon.  

Check out the archives.  It's right across from the Post a Question box above, says "search this community."  

[beth999777]

Thanks for your post and warning. My husband right now has just progressed from f0f1 to f1f2 on the fibrosure test.  I appreciate all that has been said in regard to my initial post. All the replies have given me and my husband a lot to think about.  Instead of the fear factor, we should focus on the healing factor. One problem we had was that besides the warning about mental health problems my husband's prior doctor thought he was one of those who would go for years with nothing showing up. Well, it just has, and we have a lot of thinking and learning to do. This board is a great organization, and I thank everyone for the input.  We have a lot to learn and consider.
Beth

[beth999777]

Wow! Thanks for all the helpful posts. I am overwhelmed. I think you are so right that when Henry (my husband) starts treatment we will be regular posters and seek help from the board. My husband's new doc is a certified Hep c doc, but I don't think he has as much experience as his former doc who retired.  Thanks for your comments about fear of treatment being worse than the treatment itself. I may be partly to blame for this. However, his psychologist was pretty adamant that he not start treatment about 5 years ago. He is now seeing a psychiatrist and has been for some years. As i said, he is doing well on his meds, but they feared a lapse of a significant proportion. We have so much to consider. He is now f1f2 on the fibrosure test.

Thanks again for your posts--everyone's posts.

[beth999777]

Thank you again, Stormy, for your thoughtful comments. You and the others are so right about the liver damage being done.  We need to focus more on that and take inspiration from all the brave people who are taking the treatment and ridding themselves of the virus. Thanks so much for your support.

[beth999777]

Thanks so much for your reply willbb.  I will go back and reread everything that everyone has written. You make some good points that we have tended to overlook due to fear of the side effects. Thanks for your input.
Beth

[beth999777]

thanks for your comments. I am so glad you are doing well. That is inspiring.  I hope you continue to do well.
Beth

[beth999777]

Thanks for your reply. I came on the board to ask questions. My husband and I are very worried about side effects, and we both want to learn as much as we can. He has not yet entered treatment as I explained in my posts.
Thank you again,
Beth

[beth999777]

Thank you for your post. I appreciate it so much. I hope your treatment goes well.  I wish i could see the comment so I could reply more thoroughly.
Beth

[beth999777]

Sorry, i should have waited he also had an actual biopsy about 3 years ago.

[beth999777]

Yes, the fibrosure test. Thanks for your comment.

[Advocate1955]

Like many others on this forum, my husband had no symptoms of illness, and his Hep C was discovered by a fluke.  He had vision problems, went to the eye doctor who suspected serous retinopathy (possibly caused by high blood pressure or too much caffeine), got referred to an retina specialist who confirmed the diagnosis and treated the eyes and sent him to the GP to check on blood pressure, who diagnosed high blood pressure and treated it, and then did routine lab work and discovered the liver enzyme flags.  GP then did further blood work, diagnosed the Hep C, and sent him to a gastroenterologist.  From there, one failed treatment later, referred to a hepatologist and currently doing 3 treatment, this time with triple tx with Incivek.  So, this is my long way of saying, if it hadn't been for vision problems due to too much caeffeine, who knows how long it would have been before we would have discovered he had Hep C.  He has probably had it for 35+ years, no illness, no symptoms, etc.  When it was diagnosed in 2007, he was f1-f2.  1st treatment failed as I said.  No other treatment options available at the time, so he had to wait 3 years, repeat liver biopsy in 2010, and lo and behold f4.  No mistakes in pathologists' reports, no added risks (no alcohol, no drugs, low fat diet, no iron supplements, nothing that would have increased his risk for rapid progression, but it did progress rapidly from f1-f2 to f4 in exactly 3 years.  He had blood work and ultrasounds routinely during that 3 year period, but did not know how quickly the fibrosis was progressing until the 3 year mark when he had another liver biopsy.  That is the big dilemma, no one knows how quickly the Hep C virus will damage the liver or when.  Probably for the majority, the progression is more gradual, but for some, like my husband, it was pretty fast.  It's true that the treatment medications can increase depression and anxiety, but it doesn't for everyone.  There are also quite a few medications that cannot be taken with Incivek, so it will be very important for his psychiatrist to be in close communication with the hepatologist, so that any transition from one Bipolar med to another (if needed) can be done gradually and under the psychiatrist's care with consultation with the hepatologist giving him time to stabilize on the new Bipolar med before starting treatment.
Advocate1955

[pooh55811]

Welcome to the forum.

The others have made some very good points and I agree with them.

I would just like to reiterate that your husband should be under the care of hepatologist or a GI doc who is experienced in treating Hep C patients.

Hopefully your husband has a good psychiatrist. If he is stable now, that is good. He may be fine during treatment or he may need some med adjustments, but being stable now is very good. Many of us have a history of depression and are doing treatment (triple med treatment). I was on antidepresants when I started treatment, having been placed on them in May 2011 (started treatment Sept 26, 2011). I have had zero problems with depression, mood changes, anger, anxiety, or anything since starting treratment. I had a great deal more anxiety before I started treatment (newly diagnosed in July 2011). That anxiety was caused by my fear of Hep C and also my fear of the side effects. Once I educated myself about Hep C, that helped a lot.

Once I started treatment, the treatment anxiety disappeared. It was not anywhere near as bad as I feared it might be. That is not to say I did not have side effects. I did and still do, but they have been manageable once I figured out how to control them. If he gets side effects, the key is posting and asking the rest of us how we dealt with the side effects. Among all of us, we have a lot of knowledge concerning the side effects and how to control them.  

I wish you and your husband the best.

[stormy456]

Welcome to the board, Beth.  My husband is just about to enter his 11th week of triple tx, and although it hasn't been a party, he has not missed any work. We have found the anxiety leading up to the decision to treat to be worse than tx has been.  Of course, everyone will respond differently, and you're absolutely right to be concerned especially about your husband's mental well-being while on tx.  

I agree with willb (I always do ;)  that although it doesn't seem that your husband has any symptoms, in fact, the virus is damaging his liver around the clock.  My husband had zero symptoms of liver disease, yet his biopsy showed us that he had progressed from an F1 to an F2 within 3 years.  His viral load during that time hovered around 2,500, so we weren't worried about liver damage.  Wrong...

Although tx can be very difficult for some people, we are extremely thankful for this new class of meds that will give him a fighting chance to be rid of this virus once and for all.  

[willbb]

Hi...A couple of points .

Right now, our biggest concern is the 3 drug regimen that was just presented to us by my husband's new doc.
------------------------------------------------
The biggest concern usually is the fact that his liver damage(fibrosis) is progressing. He is now at St 2 and because there is no tell tale exact timeline to further progression.... treating should be carefully considered.
The fact that there is now a "3 drug regime" as you mention is also something most people are celebrating ,as the chances of cure now are approx. 70 -80% vs. the 45-50%  before this year.


He has been doing so well with no illnesses.
------------------------------------------------------------------

Unfortunately this is not really true. He has HCV which damages the liver.You have said he now has moderater damage from the virus and the virus never sleeps..it usually continues to damage the liver unless the virus is eradicated.

That is a good sign he is stable as-pertains his bi-polar disorder and this is not a contraindication treating HCV ,however the right guidance and possible adjustments of medication may be needed while treating.

Yes..there are usually some side effects to therapy....some people have very little problem and others seem to have more severe sides and no one can predict how it will go ahead of time...

You mention having a new doctor.  it is imperative that the doctor treating him have experience with HCV,especially now there are these new regimes..

Good luck and welcome to the group..
Will

[1oftheclub222]

My doctor painted a not so pretty picture and I haven't had that bad of side effects at all, I have had some, but nothing I can't manage so far..granted I am only on Dual therapy and have only been treating for about 3 weeks, but so far so good...it's different for everyone, which makes it hard to make a decision sometimes, but they have lots of rescue drugs now to help people through the roughest of the side effects....