Hepatitis C Treatments ....My doctor says NO

[JodyLynn]

Had my first doctors appt yesterday and he said he can not treat my Hepatitis C because of my bipolar and the drugs i'm on for depression, he says because people have been known to commit suicide taking the Hepatitis C Treatments. This shocked me him saying he can't give me treatments if needed. He has me set up for bloodwork and an ultrasound, he says to rule out liver cancer and see what type  Hepatitis C i have. This is all so scary to me.

[miked]

I'd get a 2nd opinion.  About three weeks after I started treatment I became depressed and the doc put me on Wellbutrin, an antidepressant that worked great.

[sunspot]

I'm sorry to hear that news. There are others here that are bi-polar and are treating. Are your meds keeping it under control? Does this Dr know you well? Is a shrink giving you the meds? If so, what does he/she think about you starting tx? My shrink had a fair number of people seeing her that were treating and she knew quite a bit about tx.
I wish you the best.

[NYgirl]

People who are not bi-polar have a 1/3 chance of developing severe depression because of the interferon while on treatment.  The doctors are very careful to look at any medical history of depression when deciding.

I'm very sorry for your news.  I can't imagine how I would feel.

[Dale_Ray]

A good hep doctor in combination with a good psychiatrist should be able to overcome that obstacle. The just need to get you in a good place prior to starting treatment. Good luck and let us know what you do. Dale

[stangshelly]

my doc said the same because of my past "depression" issuesand i told him that this is not your decision its mine, either you treat me or i'll go elsewhere...he changed his mind after that. be assertive with the doc's or they will do as they wish. call and let him know you want to see him asap and remind him that you are paying his salary..either do this or your fired! shelly

[Kalio1]

If you are on medication and under a docs care for it, speak to that doc about this issue have your psych doc speak to your MD. Many can and do treat who are bipolar or depressive. It is important that your illess is stable and you are under a docs care for it while treatig your Hep C. I agree with these other posters, get another opinion if you can if your doctor maintains this attitude i spite of info to the contrary.
Keep in mind there are several "schoos of thought" amongst docs as to how to treat a patient in your shoes, find one that will work WITH you for the betterment of your health not against you to protect his OWN liability when it comes to tricky patients. Dont take no for an answer!

[NYgirl]

I didn't nkow if I should post it but now it seems ok

I would make my doctor let me start and see what happened and promise him IF I got bad he could take me off.  What if you do NOT have any reaction out of the ordinary?

I sure would make him understand and get a deal like that.  I totally agree with the above (just didn't really know if it was my place to say so in here) but that is WHAT I would do for SURE.

[mikesimon]

Bi-polar disorder can be a very serious contraindication to TX. Those warnings on the labels about suicide ideation and acts of suicide are there for a reason. I'm not suggesting that no bi-polar patient can treat successfully. I am saying that one should be very cautious before initiating treatment and very frequent monitoring and psychiatric involvement and supervision are crucial. Those of us who are "normal" know what a devastating ordeal TX can be and for a bi-polar it can be very dangerous. I'd get another opinion from a physician experienced with this situation before starting. Good luck. Mike

[Mister beagle bailey]

I agree with MikeSimon on this. However, this a choice you will have to make. There are some here treating like you for bi-polar and are handling it.

With me I saw 3 drs who would not treat me because of my Thalassemia anemia and when I read the paper work that came with the meds it stated do not treat those with Thalassemia, I was crushed but then I went to NY and found a dr who treated me.  It wasn't a easy ride for me on tx but I am now 2 months post treatment and doing fine.  You need a DR who will be willing to watch you very very carefully.

Good luck with what ever you decide.

Beagle

[friole]

Wow, do I ever agree with Mike on this.  There do seem  to be several people posting recently with bi-polar disorder.  It should certainly not be taken lightly.  Altho my sides have been mild, I do think that the drugs prescribed for this treatment seem to enhance whatever physical or mental problems we have.

My best luck to you -- please seek out very good professionals.
frijole

[Kalio1]

I fully agree with Mike on this too, I just want add that being bipolar doesnt mean you arent "normal"
I think he meant someone who is bipolar has a much higher risk for the associated mental risk factors doing tx as compared to someone who isnt.

[cuteus]

another thing to consider is the fact that hcv infection itself can be contributing to your psychiatric disorder and thus throwing you in a loop of tx, no tx.

you do need a better team assessing you, one with more experience with these issues.
there are many articles out there on hep c tx and folks with mental conditions, such as this one:
http://www.clevelandclinicmeded.com/hcv/hcvpsych.htm
arm yourself with that and a couple more articles and make your presentation to the MDs, try to not be intimidated.
only if you really want to get rid of hcv.
it is up to you, not the dr.

[NYgirl]

it is up to you, not the dr


AMEN a truer more wise statement was never made on these boards.  The doctors really forget = they work for US.

Whatever decision is made it would be safe to say...unless you intend to be followed REALLY CLOSELY by a team, I wouldn't suggest it.

The disease itself is enough of a trigger to become depressed - adding the IFN on top?  I have never been on antidepressants in my life but on this treatment Jody...I sure am.

And it's still been rough at best.

[mikesimon]

it is up to you, not the dr


AMEN a truer more wise statement was never made on these boards. The doctors really forget = they work for US.


This is a rather irresponsible position and I think you realize that it's not truly as simple as that. Should a docotr do anything you ask him to do regardless of the risks involved? I think you'd agree that the doctor has a responsibility to try and protect you from harm. They are supposed to have a better understanding of risks and rewards and they are charged with a "legal" and ethical duty not to expose you to unreasonable risk of harm. Mike

[cuteus]

I have been in awe of some members here who have fought to treat in spite of so many contraindications, not only one.  I guess they can always find someone who will do as they want.

I found myself with a third GI from Dx to EOT.  and was looking for a 4th.  
Drs have the responsibility to state all possible negative outcomes but allow the patient to make the final decission.

Litigation does make a lot of policy in this country, and is always in the back of the medical community's mind.

first do no harm...even if the patient wants you to?

[MissMiss]

I probably should just keep my mouth shut here but I can't.

I fully agree with Mike.  Yes, doctors work for us but if it were so simple that we, the patient, makes all the decisions, we wouldn't need doctors at all.  Doctors do have a legal and ethical obligation to give care in our best interests and we have a moral obligation to understand that care and the ramifications of such.

When my kids were young and wanted something not in their best interest, I had to make the decision not to let them have it, even tho in their heart they thought it best that they have it.  Even as they are older I have to point out it may not be best to do this or that.

Doctors all have a line they are not comfortable crossing.  If you don't agree with it, by all means seek a second or third opinion, present your case based on study of the subject.  But don't presume you have all the facts.  The internet is great but does have its limitations.

I want to say more but can't find the right words.

YOU SEE?

miss

[NYgirl]

I hate to disagree but I DO fully believe my course of treatment is MY choice and it is my RESPONSIBILITY to find out the questions and answers and help HIM decide what is best for me.

I would NEVER blindly trust injecting poisonous materials into my body without first research the side effects and long term ramifications of the medicines.

Etc.

But if a doctor makes a choice that I don't believe is in my best interest...I am sure as h3ll going to investigate it with another doctor and perhaps go against it.

Medicine is a BEST GUESS scenario at BEST.  But I would never just trust the doctor without my OWN knowledge on top.  The doctors DO work for us and sometimes they forget it.

I'm NOT a number and don't want or expect to EVER be treated that way - personal opinion of course.

[mikesimon]

I didn't mean to suggest that you shouldn't get another opinion. What I objected to was the notion that the doctor works for you and it's your decision alone. You might not "blindly trust injecting poisonous materials into my body without first research the side effects and long term ramifications of the medicines" and I would never suggest you would. But supposing you weren't that smart and there was a very significant contraindication to treating. According to the premise that the doctor works for you should he  then just acquiesce to whatever you decide? I can't imagine we disagree that would be the wrong result. I am not saying that the patient should not be actively involved in treatment decisions because I strongly believe he/she should be. I am merely saying that if a doctor believes treatment would subject one to a significant and "unreasonable" risk then he has a duty not to prescribe the treatment regardless of what the patient wants. The patient is, of course, free to get another opinion and perhaps find  a doctor who sees it differently. Mike

[aiuta]

Dear JodyLynn,

Thanks so much for your note.  I am bipolar and have recently started treatment.  As far as I am aware, AS LONG AS YOU GET A SIGNED NOTE FROM YOUR PSYCHIATRIST SAYING THAT YOU ARE STABLE ON YOUR MEDICATIONS OR WITH YOUR BIPOLAR DISORDER, you should be able to treat.  That is what I needed to do at least.  I suffered a sexual assault in mid-March (how I got the Hep C)  AND I ABSOLUTELY INSISTED ON TAKING THE MEDS TO GET RID OF THIS VIRUS THAT WAS A BLOODY REMINDER OF THE EVENT, DESPITE THE SIDE EFFECTS (and the hepatologists I spoke with both here and abroad were also wary of my taking the meds because of my bipolar condition).  I told my psychiatrist, though, that I'd be MORE DEPRESSED if they wouldn't let me treat than if they did. So, if they let ME, who has bipolar for years and who recently suffered a trauma, proceed with treatmen, I don't see why they shouldn't let YOU treat too.  Like everyone is saying, this should be YOUR decision.  

That having been said, I must tell you that these past 4 weeks have been EXTREMELY DIFFICULT FOR ME.  I have had multiple uncontrollable, unstoppable and unpredictable sobbing spells. I've had a lot of uncontrollable anger.  I've had to up my therapy sessions. I've had to ask my psychiatrist to meet twice instead of once a month.  I HAVE HAD SUICIDAL THOUGHTS, and, it's been so bad that, my therapist mentioned going to County Mental Health for a few days.  What showed me the most how bad it's been is that, when I arrived to the hepatologist's office on Monday, I, who has always been SO INSISTENT on pursuing treatment, actually said to the nurse, "so, any chance of us stopping treatment early if I get good 4-week numbers?  

Overall, FOR ME, a person with bipolar disorder, THIS TREATMENT HAS SO FAR BEEN VERY DIFFICULT--I won't lie about it to you, because that's been my real experience-- BUT I STILL THINK IT'S WORTH IT.  I GOT SO MUCH SUPPORT FROM THIS GROUP THE OTHER DAY WHEN I FIRST WROTE IN (My posting was called something like "looking for support, encouragement and experience on Hep C" posted on 8/9 or so).  I'd inform YOURSELF and talk to people with experience (like those of this great resource here) and then if YOU want to do the treatment, I'd encourage you absolutely to pursue it. I agree with what everyone here is telling you; this should definitely be YOUR choice.  Good luck with your decision, and , as an aside, I feel I must say that I might consider a second hepatologist's opinion; at least for me, feeling somewhat supported by my doc is important, especially in something as important and potentially difficult as this treatment.  God bless to you, JodyLynn.  

All my best,
Aiuta

[sfbaygirl]

Hi, hope you are doing better today. I am glad to see you posting, we don't want to see you go to that center!

My son is bipolar, yet in denial, it is such a hard thing to deal with. I can't imagine being on tx with it. These meds make us crazy without lithum and other strong AD's.

It shows what a strong person you are that you insisted on tx. I wish you the best!

(I posted to you below yesterday)

[Kalio1]

I just wanted to say hello and wish you well. I know you are having a rough go of it and I wanted you to know people out here are thinking of you and sending positive thoughts and prayers your way.
I hope tomorrow is a better day. I know this treatment can really lay you low. Take care, you are stronger than you feel!

[Forseegood]

This is an interesting thread with many salient points on all sides, particulary for me in that I suffer with depression and have done so since I was maybe, 11 years old?..I agree with Mike Simon in that we don't want to throw the baby out with the bathwater....

All the treatment, SVR, all of it, doesn't make a lot of sense if you go suicidal during treatment, and this does happen, happened to a friend's fiance...don't want to unduly scare anyone, but facts are facts....as Mr. Simon said, it wouldn't say that on the treatment lit if it weren't a real possibility, and people with mental health issues can be more likely to suffer these consequences...that being said, I've personally read and heard about people with mental health issues successfully treating this disease...

I should think that the same considerations would apply, on top of the obvious mental health considerations, for a fully reasoned analysis...What is your damage and genotype? How long have you been infected? How are you doing in your present labs, tests, etc.,...in order to better aid your ultimate treat or "watch and wait for better drugs" decision...

In terms of treatment for a person diagnosed and treating a serious mental health issue....these decisions should be better left to a phalanx of mental and medical healthcare professionals, and not necessarily patients on an internet forum....however well intentioned...

[aiuta]

Thank you very much for your notes.  I really appreciate the support & encouragement.  This Website is giving me a lot of  information, help, support and also, courage.  I think it's a true God-send and I thank you for your participation in it.

[aiuta]

The previous note was meant for you too.  I hadn't realized you can't post to two people : )

[Pauly Boy]

I take my hat off to you Jody for putting it out there, for asking for help from those who you probably don't know too well. With an attitude like yours, you'll do just fine. Continue to search for the truth. Do not limit your search to professionals, message boards or any other single group for your answers. Keep the circle large. If you stay open and honestly search for what you need, the answers will come when they are supposed to come. Maybe not when you want them to but they'll appear at just the right moment. Remember that the only thing that will keep anyone in everlasting ignorance is contempt prior to investigation!!! In other words: someone who knows it all. Keep on searching...When I first decided to go for tx, I had several questions that weren't directly related to HEP C tx, but they were very important nonetheless. I had to go outside myself and my circle of associates for the answers. Some were answered by folks on this MB, others from new "friends". Everyone had a part in my success. I made that my mission for a time. When I was to get my answers the teachers appeared, I just had to stay open. I am halfway thru tx and have very good results from my labs but, good labs results aren't the only successes I'll take from this experience. I've met more good people than bad, been given more help than been denied or rebuffed, and my belief and faith in my fellow man has grown due to it.
They are learning about our little virus as we talk. So to think that anyone has the all the answers, would be a very bad mistake. But at the end of the day, you will make the decision that you think is the best for you. I went on an A/D med prior to tx( Wellbutrin), the reasons made sense so I did it. My docs wanted to wait a while till I started taking Procrit for low hemoglobin. I wanted to go right away. He capitulated and I'm glad I pushed him. I am a firm believer in going to the horses mouth for info: don't tell me how to do it, tell me how you did it! That is why so many people have helped me so much on this board. Along with that I would never have gotten this far in tx without a smart, compassionate, communicative team of pros to help me in making the decisions for my tx. Good luck Jody. I am wishing you the best in all your opportunities.     Pauly

[Forseegood]

Really great post Paulie Boy...hope everyone can find some much needed answers for themselves...

[JodyLynn]

I've thought about it alot and i'm thinking of not having any treatments if it could make me more depressed, but if i don't what will happen to me, will i die? I fight depression everday, my mom died very young 4 years ago of breast cancer and she was my best friend. One year later my husband of 22 years ask me for a divorce, so i've had alot on me the last few years. To meet me you would never know that i get depressed at times, i think some people think because your bipolar your CRAZY lol. I think i really have it together more than most so called NORMAL people i know. The big thing with me right now is i had just started dating, single is ok but i like having someone in my life and now i feel like why bother, if i do date i would have to tell them about this and i'm sure they would just walk away. The thought of being alone the rest of my life makes me feel so sad. I wanna thank all of you getting back to me on all this, you have all been so kind and it has made me feel so much better coming here reading about what you guys have to say, you all seem so smart and know so much about all of this, i'm new so it will take me a while to learn about hep c, but i will keep coming here and reading. Thank you all. (smile)

[cuteus]

yes, you will die, as we all will. whether it will be from hcv or related causes no one can tell. If your damage is not that high, having a biopsy every 3-5 yrs is needed.

if you did not read this, please do soon

http://www.clevelandclinicmeded.com/hcv/hcvpsych.htm