side effect

[walk]

hi, my husband is half way done with pegetron. I'm very please but I am going crazy. He doesnt want to take any antidressor because he is scared of the side effect. We have 3 kids in young age. He can be very agressif under this medication and he focus on little thing and make them a big deal. I dont have help at all. He does thing like getting mad at me for using the car at 9:30pm in our daugter's birthday. Its was to go get a movie at 1 km from home. He went on and on about how hard it is on a car. Please I need encouragement. He drive me crazy and sometime I forget how he use to be. What can I do? What's going on?

[friole]

You did good work.   You went to the doctor armed, and came out with what you wanted.  Now, I suggest reading all that the Janis 7 sight has to say about the biopsy. It is a good starting point.   They really aren't that bad, but we do a lot of worrying before we get them.

Kathy

[JENNIFER5D]

Just got back from Doctors ... he is ordering a liver biopsy and said he does prescribe those memdications you mentioned.   I of course have to get blood work and my biopsy but we are looking at a treatment date of approx 4 wees.....anyway you guys have been so great to me.  Every SINGLE one of you AND YOU ARE IN MY PRAYERS EACH AND EVERY NIGHT.   Love and Gods Blessings to you all....Jenn

[friole]

Hi Jenn
First, if you haven't been to the Janis7 websight, please go there.  It will guide you and your boyfriend through every phase of diagnosis and treatment and side effects.  There are many many more sights, and you can google up all kinds of stuff.  I don't know of any particular support forums for spouses and significant others, but I am sure there are some. The Janis 7 sight is a good place to start, and is very readable.

http://janis7hepc.com/

  I don't think we manifest symptoms just because we read about them.  I think it is a good idea to become aware of what might happen.  As others have said, the anemia is a killer.  Not feeling like doing anything and wanting to sleep all the time sure affects the lifestyle.  My husband supported my decision to treat reluctantly, and he does not like to see my side effects but I do try to keep him aware of them. He has recently said my hair thinning is noticable.

Ask your doctor tomorrow is he will prescribe Procrit for anemia and Neupogen for low ANC and what his criteria is for it.  If he will not do that, ask him for a referral to a hemotologist (blood specialist) who will monitor your blood. Also, get a copy of your last CBC so you know what your starting blood counts are.  Also make sure they know you are to get copies of everything immediately.  And do post after your appointment.

Next, I am recopying a letter that Snook has posted a couple of times to give to friends and families.  It is very good and worthy of copying and giving out.

Letter to People Without Hepatitis C

Note: This letter is one of the best found written for people without Hepatitis C. Please feel free to print this letter and give it to those that need to understand.

Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.

Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.

Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.

Authored by Bek Oberin

[JENNIFER5D]

Hi everyone ... as some of you know I am seeing my GI doc on Friday to begin getting into the first stage of tx.  Is there a web page or forum for my fiancee so that he can maybe get a better understanding of what I may or maynot be going through as far as side effects are concerned.  I think he is of the mindset if you dont dramatize anything it wont effect you.  Say that ONCE to me during treatment and I am sure to flip especially if I am in agony.  lol   He is my rock and does all he can for me. I just want to be sure he knows what this tx will entail.  I know.  I have seen many friends and loved ones suffer through it and I do know everyone is different but the one constant is that it is a delibatating tx.  One that needs support from all areas.  Family, friends, sprituality, docs and others going through it.  We need to help each other in order to help ourselves.  So if anyone can guide me to a place for him to see what it may or maynot be like for me we would both appreciate it greatly.

God Bless All of You.
Stay Strong Tonight.
And Thank you.  All of you.  I feel better knowing you are all here.

[go-girl]

Sorry for stepping in, other thead was full. Thanx You are a bundle of info, much appreciated. What sites do you go to, I would like to keep up with trials of Schering 503034, VX-950 and others. Would you know of any up and coming trials in Canada, I'm on the west coast, Vancouver B.C. Also live in Palm Springs California area during fall & winter. It would be nice if San Diego & LA area had studies going. Is there a good and up to date site where one can check for trials starting?

thanx in advance, good health to you & yours

[suzieq2]

The tree thing is so funny. About two weeks ago my husband got me to out by bribing me with a new tree. We purchased a large crape myrtal.I told him where I wanted it planted.He had to dig a BIG hole which is difficult in texas hill country. A lot of rock.Next day I decided it needed to be moved one foot to left.I became obsessed with the location of the tree.He moved it. Gotta love him.

[mistybean]

Sorry about your husband.  I know I have been on tx for four months and have been impossible to live with.  One day I had a fit because someone planted a palm in the wrong place by one foot.  This stuff makes some people really really nuts.

[PasoPerson]

Cuteus is onto something there!  About 4-5 weeks ago my WBC, RBC, hemoglobin, hematocrit and ABS neutrophils were all extremely low.  Procrit was prescribed, but takes several weeks to take effect.

The last two weeks before Procrit kicked in, I had two major "melt downs".  I yelled and cried, and was full of anger.  I did this a lot at home, perpetual "bad mood".  But these two times were outside of home, "in public".  

After Procrit kicked in, I tried to figure things out "in case there's another episode".  I am a very "up" person, full of energy, positive, and generally happy.  The treatment had me completely out of breath just walking from one room in our home to another.  Gets your goat.  And then I was out of breath trying to talk on the phone.  Gets your goat.  And I was so tired I could hardly get out of the chair I was sitting in.  Gets your goat.  You get the idea ... everything was opposite of my usual self.  I believe the annoyance at THAT caused the anger to well up inside me.  Because I never complained when this was going on.  I should have gotten it out as it happened.

Because I am on an anti-convulsant, about the only AD I can take is Paxil, very mild.  Otherwise, I may not have erupted so.  Perhaps your hubby can take something to counter these "attacks".

I hope this helps you and your hubby to each understand "why" and "what can we do about it".  God bless you -

Carolyn

[friole]

I have read comments from several men on this forum who said they refused anti depressants during treatment, and they wished, in retrospect, that they had taken them.  They could not see the changes in themselves and they did become more aggressive.  This may be what is happening to your husband.  

I have told my husband that if he thinks I am getting depressed, he must tell me because I really don't think I will see it.  Perhaps you could talk to him at a time he is calm and explain this to him.

I have also read that a Zinc deficiency during treatment may cause foods to taste metallic or different.  Perhaps this is the food problem.  Zinc is fine to take during tx

good luck at this difficult time,
friole

[cuteus]

abusive behavior is not the norm on tx, not even a common behavior, unless there is a pre existing condition of domestic abuse, which you said has not happen before tx. You need to call his dr. You can't blame everything on the meds, as much as we want to. I thought about doing that with my speeding tckt, but I can't in all honesty. Is he anemic? Long term anemia and O2 deprivation in the brain could cause unwanted changes that we don't know about.

[PasoPerson]

I can totally relate ... OMG it's terrible.  And I tell myself, "hold your temper hold your temper" right before I lose it.  Then I cry because I lost it.  And because I have Hep C.  But after the crying, everything comes back into perspective.  Well, TX perspective, not completely NORMAL perspective.  (Hey, I was never completely normal to begin with!  LOL)

[indyjo]

Hi. Sorry to hear about your trouble. I don't comment much here, but I feel that I must comment on your situation. It sounds as though your husband has become aggressive, violent, and impulsive (or has become MORE aggresive, violent, etc). I suggest that you go to any community mental health center that is nearby and request to talk to someone about your situation. Sometimes it is helpful to have an outsider's support and advice to put things in perspective. Community (not private) mental health centers charge fees based on a sliding scale, so if money is tight, it would be relatively inexpensive. I don't know if I would call his doctor, as I would be afraid that if there is no intervention, he would be that much more angry. However, please do whatever is necessary to ensure that you and your kids are safe and free from abuse. Good luck.

[NYgirl]

Food does taste very different to us on the medications sometimes.  I am sorry he is being so abusive - we do have mood pattern problems on the medications - but I would not let anyone punch either more or the door and let them feel this is acceptable.

Perhaps you can find a counseling group somewhere in your area to discuss this with other women in general?

I hope you find help and things work out for you!

[walk]

I do agree with him knowing its not him. But sometime he still doesnt let go. One day went after me and pounch the door. I said "I want to be alone" and I close the door. I did stay calm and agree with him but still...... he didnt let go. He wanted me to say that my food was very discusting. (not true but he doesnt taste thing the same)

[SnoWav]

That is a bummer,I meant my wife jokes me about my stupid behavor and I let go, On another board I watch, a women has the same problem with her husband being very upset and mad all the time. He very well might need some happy pills.

[honey11]

Walk,,,,I found out that when dealing with someone that is currently on riba haha and that includes myself also,,,,Sometimes that person does tend to rant and rave over little things that don't matter.  Easier to agree and say you are right,,,,next time I will do such and such and if they try to pick a fight over that,,,,Escape!!  Quickly!  Thats all you can do to get through the period and if its a year,,,that is a long time but not worth it at times to try to reason because there is no reason other then,,,,they are feeling yucky and tired of the tx,,,,and just miserable at times.  However,,,violence of any sorts is not common and cannont be tolerated.  You need to call his dr and tell him what is going on if he can't control his temper,,,,especially if you are afraid of him....

[walk]

yes he does that and I usualy let go. But he can be violent verbaly and physicly too. One day he puch my leg hard just in a moment of frustration. He get into mood were he do crazy thing like passing a car when engaging into the highway. He is nice person usualy. But now I'm scared of living him with the kids.

[SnoWav]

On TX I sometimes find myself focusing in on dumb things My wife who has been thru TX and has cleared just makes light of my sometimes stupid thought process, That reminds me to just let it go,it's not important. 38 weeks on the riba river.