2 years ago my husband was diagnosed with HCV. He has since undergone Interferon/Rebotol Treatment for 6 months then Pegalate/Rebotol Treatment for 6 months. We thought he had beaten it, but it has returned. He is now in his second month of Infergen/Rebotol Treatment. He takes (from what I understand) the highest dose prescribeable of this medicine (.50ml injection daily + the Rebetol - 5 pills daily). Throughout all of this, he has always managed to maitain his busy work schedule and an overall positive mental outlook, until last week, when we went for our monthly check-up, I explained to the Dr. that I was starting to see signs of depression and that his usually mild tempered manner was becoming volitile at times. As a result, the Dr. prescribed Tofranil (anti-deprs - 75 mg, 1 time a day) along with Ultracet (for the pain). He has been taking these new meds. now for 5 days, and I am not seeing any improvement, in fact, if anything, it seems to me as though he has actually gotten worse (both physically and mentally) since adding the new meds to his regiment. Because it has only been 5 days, I am thinking/hoping that perhaps his body will adjust to it and that things will improve.
I am hoping that someone will be able to advise me on the following items:
#1, How long should I allow him to continue using the new meds without seeing any positive results?
#2, Should/can I consider trying Homeopathic remedies in addition to his treatment?
#3, I am having a very difficult time dealing with his new found anger and depression (neither of which he has ever showed signs of before). I know it sounds selfish of me, but for the first time in our relationship, I am feeling distant from him and am starting to feel as though nothing I say or do is right. I feel as though we have been able to succefully deal with his past treatments based partially on the closeness of our relationship, and I fear that the distance that is developing between us now will make this treatment much more difficult to deal with. I will do whatever it takes to help him, but at this point I find myself facing a horrible monster, that I do not know how to defeat. Does anyone have any personal experience and advice for dealing with this? Please advise ASAP. Your respons will be greatly appreciated.

We have visited these issues here before.

I'll take the issues one at a time.

First, it takes up to SIX WEEKS for an antidepressant to stabilize in a person's system. Some take more time, some take less. You may see some effects right away, such as sleepiness, but these are the effects of the drugs, not a lessening of the depression.

Sometimes, anti-depressants will not help at all. Your provider may need to experiment some to get the right one for his needs. Give the medication about two weeks and if there is not improvement, contact your provider for another talk about this.

Second,do not try taking anything (I hope you are thinking of St. John's Wort--don't take that if there is liver diease!) along with treatment unless it is approved by your provider. You could make things worse, rather than better. Remedies are drugs, too, and can negatively affect your husband and/or the treatment results.

The last part of your message is the very easiest to write because I have been there. But it is a very difficult message to get across. I think it is because the treatment lasts so very long and the end is usually not in sight........

But here goes, assuming there is no medical reason for your husband to discontinue treatment and a really good reason to continue, the first thing you must understand is that you are in a "caregiver" role during treatment. Not before, necessarily, and not after, but definitely during. This is why I am so blunt about relationships and support systems being made part of the decisonmaking process. A treatment is not only about the patient, it involves his/her entire social/family circle) Maintaining a marriage, parenting responsibilities and employment, financial, and career considerations are incredibly difficult and impossible for some people to maintain during treatment.

Your husband is not going to be capable of stretching himself that far emotionally, physically, or intellectually during treatment and for a while after. You are asking the impossible for him to meet your needs during this time and, unfortunately, this will be a major test of your relationship and your ability to put your own needs on hold until it is over. We hear so much about being true to your own needs, taking care of yourself and all the rest and the message now seems contrary to all of that. So, remember, I am saying this is TEMPORARY, until treatment is over. You need to find other strategies to get YOU through.

The down and dirty truth is, that you may need counselling to help you through this. I pray you find a counsellor that "gets it." If you are blessed with a strong family or support system (or both, if you are really lucky) you need to let them in on what is going on and allow them to help you hold on until this is over. Keep telling yourself its the drugs its the drugs its the drugs.

It is a delicate balance if the behavior is disruptive. You and he need to have a strategy by which he removes himself or understand that this is happening. Between you, a stretegy to let him know that the situation or his behavior is escalating and that steps need to be taken before the situation is out of control. He needs to agree to trust you when you tell him that things are geting out of control.

We agreed in our house, for example, that disciplining children while on treatment was a very bad idea. Our son agreed, too.

If your husband is experiencing rages that look like they might result in harm to himself or others (you or anyone) the doctor needs to be notified and he should be taken off the medication.Any weaponds in the home should be put under lock and key, and preferably removed. I mean this.

Being on the highest dose may also be the cause of these problems, so discuss this with your provider as well.

Have your husband's thyroid function checked,. The last round of treatment may have knocked it out of whack and the current round is playing havoc even more. Just a tip.

I hope this helps,

thanbey



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Thanbey,
Thank you for your response. I certainly appreciate your insight. I am so upset over this sudden change in my husband and our life. We managed to make it through the first 2 rounds of treatment without having to deal with the depression/anger issue. I am accustomed to tolerating his occasional grumpiness (while undergoing treatment), but this is different. I guess I was hoping for someone to just tell me that it would go away as quickly it appeared. I am hopeful that the Tofranil will help him. I just dread the thought of having to wait a few weeks in the hopes of possibly seeing results. He is not violent, so I don't fear him, I just fear that his anger will push me away, and that is the last thing I want. I don't know that we are in need of couseling yet, we are still at a stage where he realizes and appologizes for his depression and grumpiness and I am still forgiving of it. I just don't want for that to change. Perhaps I should go to counseling to learn how to deal with his anger. Do you think it would be sensible for me to go alone?

I was, actually, suggesting you go alone.

The issue is not your relationship. The issue is your need for support during the course of treatment because he can't offer it. Treatment is not the time for relationship counselling.

I am sorry to ask this, but why is he even taking a third round of treatment at all? There are lots of people that opt for two courses, but a third is very unusual and seldom leads to a response. In fact, the chances of a response are dramatically reduced if the first was unsuccessful.

A histologic imporvement may alredy have been achieved.

thanbey
www.hcop.org (http://www.hcop.org)

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[This message has been edited by thanbey (edited 10-29-2002).]

Than,
Thank you for your response to my previous e-mail. Today I have a far more important question, first of all just so you know, my husband is really only undergoing his second round of treatment, his first treatment was 6 months of Interferon A and the second 6 months they switched him over to Pegalate. He was thought to have beaten it, but his check-up viral load came back with signs of the virus, so we started him on Infergen (he is now 2 months into it). He has been horribly sick since last Thrusday (the day he had his last check-up)the Dr.s prescribed the anti-deprsnt and pain pills, which he startes taking that evening (last Thursday). He has since been sicker than ever. Last night we decided that he wasn't going to take anymore of the anti-depr. or pain pills and we decided to give his body a break from his nightly injection and pills, just for the night. I was hoping that this would give his body a break and that he would feel a little better and that we would return to his treament today. But, he was up sick all night and still doesn't feel much better. I have put a call in to his Dr. but have not heard back yet. Is this a bad idea? Should I wake him up and give him his injection and pills? I don't know what to do. Please advise immediately!!!

I suggest you wait and speak to the doctor.

thanbey www.hcop.org (http://www.hcop.org)

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doodlebug,
My heart goes out to you... You sound like you are living minute to minute and you are going to drive yourself crazy...
First I like to say you are a good wife...It is not a easy load to carry...being the giver of help and also being the receiver.. You hang in there, take that breather while you can and ask for help from friends and family..I am also on treatment. Sometimes after I act like a jerk and say things I shouldn't or don't mean and its hard to take it back...I don't know who I am even getting mad at...me? the treatment? my spouse? I just act and say stupid stuff....again you are a good wife....you have already put up with alot...
Trails strengthen your marriage...like thanbey says...its not him,,,its the drug....

Also, there are MANY different antidepressents he needs to know what works for him...I am on prozak (20 mlgs a day) I also have a back up of addivan if I need but I don't take unless it has been a real long day..

I just walked in my doctors office and told him I was having the same affects as your husband and I was crying all the time...He decreased my treatment...He actually had to do that twice...now I am on a very low dose but I can function in life (I have a special needs 12 year old son that can be challenging at times)
I brought him in to my doctors with me and as he climbed all over the table and played with the doctors TOYS I think the doctor finally GOT IT...

If you made it this long I know you can march on...
I will pray your husband gets the help he needs so he can get the quality of life as well as quanity...

Stay on board and let us try to help you...Like when your at your wits ends and you need to vent...

and make sure you bug that doctor...don't let him get away with putting you on the back burner...You need him NOW....Be your husbands voice...he will thank you for it...Maybe the doctor knows of support groups for hvc...

Good luck...and God bless...jj

Wow. I just joined this board, and I'm glad I did. I am so sorry to read about your situation, doodlebug, but I can only tell you that I believe you are doing absolutely the right thing for the man you love. You seem to be educated about the disease, the meds, the side effects. And you CARE. That's the main thing. I know it must be taking a lot out of you, but it's the right thing to do, and it is sure to help your husband tremendously.
I had very little support during my treatment, and between working and stuffing the depression, things got a whole lot worse. The treatment didn't work, and months later, I am feeling an almost frightening dispair. Without loving support, this disease is very hard to handle. Many spouses aren't able to do what you are doing. I think you're very brave, and I wish the best for your husband's recovery.

Welcome to the board Mart. Glad you joined too. What's your story? I'm sorry treatment didn't work for you, sounds like you really went through it.

Maybe we can learn from your experience. Care to share?

Jeannie

hi marthash...
welcome to the board, you will find alot of great people here, with alot of knowledge, and experiences to share.once again welcome...
keep the fait,bless you...mj.

Thanks for the responses, all. It's good to know I'm not alone. I was diagnosed three years ago - did the Interferon-Ribaviron combo which was not effective in my case. The meds made me sick for months till I got used to them - when it didn't work, I was really disappointed. My family, who are usually very supportive of me in general, couldn't deal with the whole Hep C thing, and I was pretty crushed about that. But recently I have come to understand that they have been afraid ever since I got the diagnosis. We knew two people who died of Hep C related illnesses, so that didn't help the situation. I've always been "the strong one", so this has rocked their world a bit. I think they feel that if they don't pay attention to it, it will go away. Took me a long time to understand that. I think this is a very hard thing for families to deal with, because on the one hand you need support, and on the other, you have to go on with life as though everything is normal. It's a difficult dichotomy, to say the least. I'm sure everyone has gone through something similar. I'd appreciate any input. Thanks.

hi marthash...
i read your post and i hear you loud and clear. when i first found out about my hep. i had to sit in the gps. office and conduct myself (i normally do not cry, it has always been that way). when i got it all together, i told my husband, he is a great hubby, and i am blessed to have him in my life, i do not have a close nit family at all. in fact the first time in my life i had ever had supper at 1 of my sisters place, was 3 years ago and she asked me not to help with the dishes as i might cut myself http://www.healthboards.com/ubb/frown.gif needless to say i was furious about that)!but we have our lord and he is in control, we are never alone,our fellow heps are a blessing, they can relate to us and we all share the something in common, be it hep, or loved ones with hep.
keep the faith,bless you...mj.

Hi Mart,

We must have fallen out of the same family tree LOL!

My family has always been that way. We are a very strange group. My parents just don't talk about things so that makes it seem as a problem doesn't exist. My husband doesn't speak of it at all unless I bring it up. He is of the school that since I am not treating and nothing has changed what is the importance of bringing it up. I am still trying to teach him that women need to vent their feelings and re-hash, and re-hash until we feel we have expressed outselves.

My friends are much more sympathetic but to the point they acted like I was dying of cancer. There are very supportive though. They just needed time to realize I wasn't dying at this very moment. I will always be grateful to them. They never judged me or presumed I had typhoid!

Anyway, you are not alone and I would love to discuss our parallel universe with you anytime!!!

Be blessed,
Jeannie

Hi I'm new to the board and just started treatment 2 months ago. After this last weekend I am ready to throw in the towel though. I'm taking 6 pills a day and one shot a week typically on Friday nights. Well I was unable to get a sleep whatsoever Friday evening and spent all day Saturday with a high fever and tremendous headache until almost bedtime. Finally Sunday I was back to normal (whatever that is). It seems to vary as far as my reaction to the shots but if this continues I really don't know that I can continue. The good thing is that it is working. My liver enzymes are down to 52 from a high of 140, which I know is not that high to begin with. I have a mild strain of Hep C and have had for over 10 years with really now change during that time. I just beginning to wonder why I'm putting my body and family through this ordeal when nothings changed for over 10 years. It has gotten easier from the first couple of weeks but this last weekend is about all I can take. I'm wondering if I stop now with my levels so low will they immediately shoot back up again? Has anyone dropped out early and wish they hadn't? And lastly one website stated that the side effects continue even after you stop the treatment. Is this true and if so for how long? Sorry for the long email but as you can tell I'm full of questions and no answers.

Hi, dhartma. Well, I say listen to your body and don't hesitate to stop treatment if the risks begin to outweigh the benefits. I know thats easy to say, but it has to be an individual decision. Everyone wants to stay on treatment, but "just try a little harder" and "hang in there" will not work for some people. First, advise your doc and maybe reduce dosage for awhile. In my case, I could only take two weeks. Two weeks! The fever and headaches were relentless and I could not get ANY relief during the entire two weeks. However, its now been four months since I stopped and my ALT is 49, down from 67, and my AST is 19. The URQ pain has disappeared. I will rebiopsy in three years and keep check on ALT/AST in the meantime. Good luck to you ...

dhartma,

ASK YOUR DOCTOR before you do anything....when it was to much for me he lowered the dose...twice...
also ask for a B12 shot.,...they help pick me up...
the headaches are intense....I never got headaches before and they seem to keep me down the most....I put cold compresses on but to tell you the truth nothing helps but laying down...I have been blessed enough to still be able to sleep but I also take prozak now...just till treatment is over...You might want to talk to your doctor about sleep...it's important you don't want to wear yourself down...

Stay on board and let us know how you do... If it gets to you then maybe this is not a good time....maybe you need to wait awhile for other options your test don't sound to bad to me...

good luck...jj

did you have a biopsy and what did that say?


[This message has been edited by joann jennings (edited 11-04-2002).]

Thanks for the reply. It's good to know I'm not alone any longer in this venture. I am going to get some sleeping pills from my doctor so that I can get to sleep on the weekends.

Yes, I did have a biopsy and it showed no scar tissue to date. I have a mild strain which is why the doctor believes he can get rid of it and I need to stay the course. I'm going to give it some more time. Thanks again,.

Hi Dhart--

Hope you do talk to the doc, and find some dosage adjustments or other technique to help you. In judging whether to continue or not, of course this is an individual matter, but one factor that may help your decision: what's your viral count? the liver panel numbers (alt, ast, etc.) do not predict tx response very well at all, but viral count reductions do. If your viral count has gone down to undetectable within the first twelve weeks (some reserachers say within the first two weeks), you have a decent probability of being undetectable at the end of, and after , tx.

If not, not. On the negative side of the same measure, if your virus particles are still detected after twelve weeks, many docs will end tx right then. There is that little chance of this pattern turning around by end of treatment.

So, ask for an interim pcr test, and this may help you decide.

Good luck!


hey--don't forget to vote.


sean

Hi. I am also hep c pos. I took the ribavirin and the peg interferon for one year as mandated for genotype IA. I am very surprised that your husband's practioner did not prescribe an anti-depressant when he started the meds. One of the MAJOR side effects of the ribavirin is SEVERE DEPRESSION to put it mildly.I am happy to hear that he's now on one, but it can take 3 weeks to a month for it to kick in. I know that I noticed a difference in myself when I stopped them for 1 week during treatment. I wish you and your husband much success and health,
Debbie in New York

hi
i am now off treatment for 4 months and feeling great. i tested negative 3 months into the program. i had all the side effects but worked thru them, it was truly a struggle at times. i was given elavil for the depression. if i didn't take them i would have never made it to the end. there is a light and the end of the tunnel. i never realized how sick i felt for the last 5-6 years because of the hep c. i feel like a new, healthy and energized person now that the virus is gone. i am so glad i did the treatment program and would advise it to any one withe the disease.
god bless and hang in there!!!!!

Dg, its really nice to hear something postive about treatment. Cheers to you and may you sustain clearence!!

Thanks, you've confirmed my decision! Any tips on survival?

Thanks,
Jeannie

Howdy-
first I would like to welcome dhartma,needanametouse, [good one he he]and Dg to the board, hope to see and hear more from you,

Dg-
as jeannie said its fantastic to hear of your positive experiance after treatment,I would love to hear a lot more from you.


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--Get Outdoors-Enjoy Life----Neil

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