treatment

[robinh1960]

Hi

In October 2013, I had elevated liver enzymes. I agreed in February to take a hep c test.  It came back postive. Have been seeing a liver doctor.  VIral load 144, 000.  I will have a liver biopsis on June 25th.  Doctor says I can be treated with pesysis ?? intreferon, ribravin and some other medicine. Has anyone on this forum been on through this. I have read that it is hard treatment.  can I work?  So many questions, and no one to take to.o.

[robinh1960]

Hi Sandi:

Sorry for just getting back with you.  So I had the liver biopsy.  My doctor says from 1-22.  I am at a 6. Very mild liver damage, so I really don't need to rush treatment. I will see him again in 6 months for testing.  He says that at that time they may have some better treatment that are not as bruptly as the ones now. Also, the may not be as pricey.  I feel blessed.

[robinh1960]

Good morning Sandi:

Tomorrow! I am believing for the best. In July, I will really have to decide on treatment.

[hepc4Sandi]

Hi Robin, Biopsy tomorrow? I will be thinking about you. Be brave.

[robinh1960]

Thanks for your support Sandy.  I will let you know how things go.  

[hepc4Sandi]

There are some drugs you can take to relieve depression and anxiety while on Tx. You can talk to your doc about it. I was in good health also, I think it really helps minimize Sx. The moods I was able to minimize by avoiding situations that would trigger them, happy music, happy books, happy movies. I tried to minimize interactions with clients too, as I can be snarky anyway. Really get a good support system in place too, it helped sustain me.  Good luck with the biopsy too.--- Sandi

[robinh1960]

Thanks for sharing your experience on the treatment. I am concerned about the depression and anxiety. I am not quite sure if I want to go through that. I will have a liver biopsy on Wednesday. We'll see what happens. I am in good health other than the hep c. I have been full of energy for over 9 years.  I wanted to talk with my gastroentologist about other available treatment.  I see you live in san diego I just can back from West Covina/Hollywood/LA. on the 4th.   I attend a prayer breakfast and visited with friends and family .  I had plan to go to San Deigo but decided on next time. I heard it is so beautiful.  Can't wait to visit there.   Any way you take care.  Talk with you later.  Robin

[hepc4Sandi]

Hi Robin, I am actually feeling pretty good physically. I started mentally feeling better almost immediately after Tx, just had and still have issues with the blues, anxiety a little, and being impatient. I think most of my Sx were from the ribavirin: dry skin, rashes, head buzz, tiredness, I think my hair thinning is a result of it too. Physically I felt much better after 1 month, my blood levels were all back within a normal range (though still on the low end of normal). I could walk and shop without feeling too tired. I was reluctant to really do any exercise until my 1 month meeting with my doctor, as my hemoglobin had gotten fairly low, and I could really feel it.

The Interferon is actually an immune booster you know, and it keeps you well while on Tx, I was never sick with anything while taking it, but got a sore throat and upper respiratory infection almost immediately after going off it.

The worst Sx from the interferon were the symptoms I had the night of the shot (Friday), and they really weren't that bad. Tiredness, mild fever and chills (mostly controlled by a motrin before and a Tylenol after the shot), welts at the injection site, but they didn't last long, only a few hours (I used a topical Calundula cream for the welts, and it worked immediately). Then I was really tired and head buzzed the next day, so relaxed and watched happy movies with a friend, and really by the following day I was fine. I was able to go to my Bible study class every other week. I never had any digestion issues. I didn't have a good appetite, but made myself keep eating and drinking water—I maintained my weight the whole time. Made shakes, ate applesauce, snacked a lot.

I think that only having to take these meds for 12 weeks helps us to escape the worst Sx. I have read that the Interferon Sx increase after the 12 week mark, so that was one reason I had no problem taking it I think. I think I started feeling it more at the 10 week mark, but of course by then the end was in sight. Of course I know there are plenty of people on this forum who will disagree with me, but that is what my experience has been.

I think it was all worth it for the pay off, and I would do it again in a heartbeat if I had to. If you have ever seen anyone go through chemotherapy, this is a walk in the park by comparison.

I am feeling better week by week, I had figured this whole year to do this and recover from it. I have worked the whole time, but have not done much outside my home, am just now going out to visit with friends and do a little yard work. Thank goodness for the internet. Most people don't even know this is going on with me. Thank goodness also for this forum, it has been a great support for me, and it helps me to keep things in perspective. There are so many people on here who are so much sicker to begin with that I was, and maybe that is why I was blessed to have it so easy relatively.

I hope this helps relieve your anxiety about it, feel free to message me any time with questions or worries. Good luck.

NotHepC4Now Sandi

[robinh1960]

I have heard a lot of stories about horrible stories about  post interferon treatment  Please tell me how you are feeling physical seen completing the treatment.  

[robinh1960]

Hi

Thanks for the info..It helped a lot. I have since told two of my children. My 26 year old was testing and is negative. I am so happy.   I will have  a liver biopsy on June 25th. Trying not to think about it. But at least I will get some answers and see if their is any liver damage.

[hepc4Sandi]

Also I told my 24 year old daughter once I decided to do treatment. She was tested and was negative. I had a low viral load when I started also 192,000. My liver enzyme levels were all good. I am genotype 4a. I have been very lucky. I was able to text my doctor's nurse with questions. This forum has been great, have made several good friends. It is good to know you are not alone, and some people do better, some people do worse.

[hepc4Sandi]

Look for my thread, Week 1 done, 11 to go on triple Tx. It is my history of my Tx. The thing with Interferon is to plan for it, I took my shots on Friday nights about 7:30 pm, after eating an hour before, its effects I would feel within 20 minutes, I would feel flu like for a night, fever, get welts at injection site which would go away, really tired. I would relax the next day watching happy movies, and would generally feel better though tired the next day. I would feel well enough to go to my Bible Study class every other Sunday.

I was able to set up telecommuting with the companies I work with, and would line up meetings for the last half of the week, when I would have more energy. I know almostsixty worked away from home the whole time on the same Tx. My brain felt very clear and productive the whole time, but I did not feel very creative, and did not have very much patience.

I work with 2 women who have gone through breast cancer treatments, this was nothing compared to that! Everything is relative. Knowing it is only 12 weeks makes it do-able.

You need to set up your support system ahead of time, and let them support you. Listen to your body, communicate with your doctor, keeping eating, drink lots of water. Before you know it you will be done, I finished 20 days ago.

Good luck! Feel free to ask me questions!

[robinh1960]

Can you tell me your experience as far as working and the treatment.  thanks again. Robin

[robinh1960]

thank you for hope.  All I hear is negative things about this treatment.  Can you tell me a little bit about your experience.  

[hepc4Sandi]

The interferon treatment wasn't that bad for 12 weeks, it is really do-able, especially if you are in otherwise good health. It is not a living hell, it is uncomfortable for 2 days a week, but I was able to function. It is all in the scheduling of the shot. I had a good friend who is a nurse who gave me the shot every week, so that part was easy. I planned my weekend around the shot. I could see how if I had to do it for more than 12 weeks it would be harder. It is not as bad as chemo, if you have ever known anyone who has done that. There are new drugs coming down the line. I chose not to wait. Good luck!

[robinh1960]

Thanks for your comment.  I am not sure when I acquired this, however, for the last 7 years I have never felt better.  So much energy.. I know I have to tell my children, it always seems like the wrong time.  Maybe I haven't come to an acceptance as of yet.   I am so glad I found this site, it gives me comfort to know that talk to others that are going through what I am.  My biggest fear is the interferon. treatment. I heard its a living hell.  

[hepcandme]

Hi Robin

Welcome to the forum
If you look through the headings for topics of discussions, then you will see quite a few that address the new treatments as well as other treatments that people are currently on or have been on to treat Hep C and the resulting liver damage

Best to learn as much as you can about Hep C so you can ask your GI doc important questions about your own treatment.

There is no reason your children shouldn't know about your illness. Though I didn't tell Everyone, my closest friends and my family and all of my new friends in support have shown nothing but kindness and a willingness to help. Your children may be relieved to hear that you are addressing an issue that has made you feel tired all the time

I have been working throughout my treatment (Sovaldi/Olysio) and even though I am quite fatigued at times and have had other symptoms, working helped me to stay focused on other things rather than just this illness

Good luck with your biopsy. If the damage to your liver is minimal, then you can move ahead straight away to get rid of the Hep C for good
Even if the biopsy shows liver damage, you are much better off getting rid of the virus that beats up your liver 24/7 and likely has for some time

There are other relatively easy things you could begin doing right now - restrict your salt intake, eat a well balanced diet - no red meat, lots of fresh fruit and veggies and, of course, do not drink alcohol

[can-do-man]

My guess on why your doctor thinks it is a good ideal to tell at least your kids is so they might get tested. If you were infected when they was born there is a very slight risk of it being passed on. and when I say very slight it is said to be around 5% or less so no need to panic.

[robinh1960]

Sorry your treatment has not worked.   Can you tell me a little about your experience.

[robinh1960]

He wants to see if there is any damage to my liver.Also, I want to know when I got it.  IAlthough I don't feel sick, and my viral load is low, I could have liver damage.   You may have a low viral load  Do you have hep c ? if so, where are you with your treatment, post treatment,etc.

[can-do-man]

I have gone through two different types of treatment. Treating now don't even compare. It used to be anywhere from 48 to 72 weeks with much less odds. Only doing 12 weeks would have been so nice.

[robinh1960]

have you gone through the treatment.  I have not told any one about my diagnosis. I have adult children. My gastroentologist says I should tell my family.  

[can-do-man]

My first question to him would be why Interferon? And depending on other factors not known to us is a Biopsy even needed. Depending on labs and other things there is less evasive ways to rule out cirrhosis and since SVR rates are so high now some doctors don't see the need... Again good luck to you.

[robinh1960]

Oh, the treatment will be for twelve weeks.

[robinh1960]

I have genotype 1b. He says I have to take the interferon.