hepatitis

66 -- Good luck to you and to your BF. This may be a difficult year for you both. I hope you can weather the storm and that he is successful with his treatment and you can both get back to your lives.

My hubby did the treatement in 2003 and it was AWFUL for him, for us, and for our kids and families. And he did not clear the virus.

He was like a different person. He is quite ill now, and often cranky, but not like back then! Or we are older and wiser now.

Would your BF consider meds for mood changes? Talk to his doc. Hubby's doc prescribed some that really helped. But he needed more and was too crazy by that time and wouldn't ask! Get help while he is still making some sense.

I understand that the dosages of meds may be more tolerable these days and hope over time he will tolerate the treatment, as the long term effects of Hep C are very serious as your liver fails.


Those undergoing treatment, or through the treatement themselves will likely post here as well.

But for me, the partner, it was awful too. I never know when he was going to fly into a rage. One day he jumped out of the car while I was driving and I thought he'd get killed! He was furious because I pulled up to the "wrong" gas pump! He was often raging...which was the worst part for us. The sick part was almost easier...the nausea, sweats, trembling. The fatigue and mental fog are pretty typical.

Is he trying to work through the treatment? Some here have been successful at that, some not. My hubby could not. And not for about 6 months after. He was a mess and has had some long term effects in his digestion that have continued for years.

It is VERY important that he not be drinking now or ever again. My hubby went through 6 horrible months, the virus did not clear, then after a time he started drinking alcohol again and that has turned out to be a really bad idea. 7 years after treatement, his liver is so decomensated that he needs a liver transplant or he will die. It catches up to them if they drink!!!!!

My recommendation about getting through this is to realize that he is using 100% of his energy to keep himself together during the treatement. He has no eyes for you, no ears, and no ability to look after your needs. You are pretty much on your own. If you are okay with that and can understand that this isn't about you, and YOU can understand that he is the patient and you are okay by yourself and simply look forward to the day you get your BF back to normal (maybe in a year), you will probably make it as a couple. Many of us stuck with our men. Those who continue to drink and those who do not.

But if you cannot tolerate his treatement behaviors, you may have to break up over it. He should not be abusive to you verbally or physically, but some are. That is never okay, but I know my hubby didn't realize how awful he was being, how crazy he was acting.

Now in the last stages of liver disease, he has days of a similar affect, when his hepatic ecephalopathy kicks in, that he is crazy like during treatment. I am older and wiser now and though I about want to quit...I talk to myself and remind myself that it the disease talking and let it go...take a break...take a walk...get my hair done...call a friend.

Take care of yourself and I wish you both well. This can be horrible. but if he clears the virus, as some do, especialy if they don't have type 1a, he/you can have a normal life.

Mama Lama

Oh MY GOD, your words have really helped me so much. Thank you for responding. He has 11 years clean and I will have seven years in June. And yes its a mess. I don't know weather Iam coming or going and the only thing I can do is PRAY. But I love this man we grew up together and have been through alot together so leaving him is not a option for me at this time. And yes he is very angree all the time and yes its so hard to thing its not me that hes angree with. So iam trying my best just to keep him calm through all of this. But on the inside iam feeling so alone here. Omg you touched base on so much of how iam feelling here. And this is the first time iam feelling like my feellings have been validated and iam not crazy lol. I am really sorry to here about your husband not doing well I guess we all need support some where. I thank god I found this site and thank you so much for answering me

66--thanks for writing back.

We'll try to help you, but maybe you can help others as well.

I am interested to hear about the study he is doing. Several folks here at the site are hoping to get into the "new" treatment next year. And I wonder IF your BF is ON the new treatment in a trial. What is he taking, how much, how often?

When Connie did treatment, she had one drug. My hubby had the 2...gave himself the Interferon injection 3 times a week and took a Ribavarin pill every day. I can't remember the doses. He will need the treatement again after transplant as the transplant will replace his liver, but the new liver can be destroyed by the Hep C AGAIN.

Mike was 6 months on the treatement and his viral load got WAY higher, so they stopped, especially since his platelets got so low and he needed procrit and neupogen injections to keep his red and white blood cells high enough. (Those shots were not covered by insurance at first, then he got in a program!) You said he is clear at 2 months. Gosh, that is what we are hearing, that folks are clearing quickly and staying clear! Fingers crossed!

What genotype does he have? The chat on the web is that it is working for 1a, where the old regime was not that successful for 1a.

My hubby lost about 50 pounds (some of which he needed to lose anyway, but then it got way too low). He had diarreah all the time. He was so tired and he felt like he was in a fog and it frustrated him...that things he could normally do were too hard and he got mad at the computer, cell phone, tv, car, etc etc. (That happens now again with the Hepatic Encephalopathy - the fog not the rages.) He got what we called "cancer hair." It didn't fall completely out, but it was thin and scraggly. He was so pale and so weak. He looked like an old man (which is how he looks now many days).

Good luck. Let us hear from you.

If you look at some of my old posts, you will see I get out on the end of the pier and feel like I'm going to jump plenty of days and this group has brought me back to shore!

Mama Lama

Hello mama lama

He is on pegaferon and the other one that starts with an R and before that his pills came in a packet and he had to take six in the morning and six at night. He only took that med for like a month not sure what the name was but i will try and ask him when its the right time if you know what i mean. He gets his shot once a week on monday and take two of the r meds once in morning and once at night. He was at 5 million when he started and i talk to the lady at the clinic today and she said he is under 25 so that mean he is not registering and the disease is undetected is what she said. As for if he has 1a or 1b I will try to ask next time I talk with her she said she will keep me up dated on whats going on. Sorry I don't have more info for you when I ask him questions he becomes defensive so i have to take it easy and ask when the time is right

Steph, the "r" drug is Rebetron, which I explained in my previous post.  It sounds like he was on the protease inhibitor for awhile and now is just on Interferon injections and Rebetron (ribavirin.)  We don't yet know what the protocol is for this new treatment, but perhaps the protease inhibitor is only taken for a certain length of time.  Have they said how long his treatment will last?

Hugs,

Connie

I think you mean PEG-Intron, which is "a covalent conjugate of recombinant alfa-2b interferon with monomethoxy polyethylene glycol (PEG.") (Per RxList.com.)  It does contain interferon.  This is one of the drugs in "the combo."  The other drug is ribavirin (brand name Rebetron), which is the other drugs in "the combo."  The unknown 3rd drug that was taken for 1 1/2 months was most likely the protease inhibitor...or a sugar pill, since this is a trial.  Usually some will get the real drug and others will get the sugar pill as a check and balance in a study.

Do you know if his liver enzymes have improved?

Hugs,

Connie

 

Connie, Your right he did say some will get a fake pill and some will not and they will not tell you which one they gave you. And yes Iam sorry I dont know all the correct terms but from what you stated you do and thank you for the info, You to David. I can tell you that the first month 1/2 made him a snake I am not sure if it was just an adjustment to taking the meds or if he really did  in fact have the real trial drug. But I do know that his level was at 5 million when he started and is now undetected. I will keep every one posted as we continue to go through the treatment stages and also look for support from those of you who are going through treatment to get a better understanding of the behaviors every one went through. And also the family members who had to deal with patient going through treatment. Thank you all for being here I really feel like I have made some friends on here.

He has to do treatment for 48 weeks although he gets discouraged and frustrated from the depression alot. Normal task are almost inpossible for him to do. He gets impatient very easily after the 48 weeks he has to go back three months after treatment and then again in six months to see if he is still at zero. Since you did treatment already what did you feel like and how did your feel towards your partner or did you have some one in your life at time. Did you feel like you hated every thing? Did you go through periods of being mad at your self for contacting it in the first place? My bf did herion and thats how he got it.

Carol, if there are any, they're not talking about it!

Steph, in my case I was only on treatment (interferon only) for 8 weeks at most.  So I never experienced any side effects.  If I get on the new treatment when it becomes available, I'll post about my sides...if I'm not too sick to type.

Hugs,

Connie

Hello Steph66,
I'm surprised no one mentoned this but I remember when I went through this treatment, this was the one time in my life that I actually thought I was going to die! I don't want to discourage your boyfriend in any way! because it worked for me! All I can say is H2O !! W-A-T-E-R!! LOTS of it! you will get sick of it! so be creative, and flavor it with different things that are nutricious. Let water become your best friend, buy a sling and take a bottle wherver you go. You will notice that you get less headaches too. This WILL PASS! it is a tough thing to go through but he will make it, be there for him, but don't put up with any physical abuse, and he needs to know that you wont. This will make him think twice about 'going off' in public, and having to go back to prison!

Be grateful for the good days.  As for meetings, at least he's going.  Keep him on that path to ensure long term sobriety.  Also, should he ever need a transplant, he would need 6 mos. of documented proof of AA meetings or alcohol counseling.  Which means he would have to sit through the entire hour, as the chairpersons at AA will not sign such documents (that he's been there, the name of the meeting, date and time) until AFTER the meeting is over.

Hugs,

Connie

Steph, that is indeed great news that he has 11 years of sobriety.  Congrats to him!So that would not be an issue for him should he need a transplant.  I know it hasn't been for me (24 12 yrs.)  Is he still able to work?

You know him well, so I'm sure you can discern the slightest changes as well as the big ones.  He's very lucky to have you with him.

Thoughts and prayers for both of you.

Hugs,

Connie