Need Advice for Someone About to Start Interferon Treatment for Hep.C

Updated on July 18, 2010
S.L. asks from Missoula, MT
10 answers

My mom is going to start Interferon-based therapy in January. She is been living with Hepatitis C for nearly 20 years (she is 59). Up until just this month she has managed it well w/healthy living, meditation, alt. medicine in conjunction with her medical doctor. We found out the liver scar tissue is connecting (stage 3/4 cirrosis). My big question is, this treatment can be grueling (much like chemo) and what can I do to help. Has anyone out there had a close loved one go through this? What can I expect? What is the most helpful...such as dinners, cleaning the house, reading, just being around? I have a 4 year old and her only grandchild. Is it helpful to have distractions such as an active kiddo visiting? So many questions and concerns...she is my mom, my best friend and it hurts my heart so much to see her suffer.

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So What Happened?

So it's been just over a year since I posted my questions about Interferon. She is on disability and has only medicare for insurance. At the time she applied for approval in December, Medicare stated she "had missed the window" in which to qualify for coverage of such treatment and would have to wait until the following November. Well, November has come and gone and my mom has decided not to go ahead w/Interferon but instead to continue to hit it w/homeopathic medicines and diet. This last week she has been sick, passing stones over the last month and itching like crazy...all symptoms of liver damage. I feel like Hep C is a ticking time bomb. I have hopes that she will make it over this hump but sadly feel she will pass sooner than if she would have given the treatment a try. She has the genotype that makes the odds a 50/50...but that's 50% it would have worked. Thanks everyone for all the kind words and advice!

More Answers



answers from Salt Lake City on

First off, let me say I wish your Mom all the best. I apologize for the length of this, but I don't want to forget to mention something that might help you and your mom through this tough but necessary time. I understand all of your concerns and completely empathize. It will be rough on your Mom and hard on all those around her, but if treatment is successful, then it will be totally worth all of it.

My mother was one of the first to do the interferon treatment for Hep C through the drug trials. It was a miracle for her. She had the disease for nearly 30 years before starting the interferon. Her only other option would have been a liver transplant, and due to a genetic condition that wasn't an option. When she was finished with the 48 weeks of treatment, her viral load count was zero and has stayed there for almost 7 years now. So it was totally worth it to her.

However, the pegylated interferon (known as Peginterferon alpha 2B) is extremely tough on the body - especially if your Mom is taking riboviron (Rebetol)with it - I believe the approved treatment is the two drugs administered together over a course of 48 weeks.

Interferon is a form of chemotherapy, and there are side effects to it like all chemo. My Mom lost a lot of her hair, a ton of weight, and was extremely achy most of the time. Her skin became extremely friable over and around the injection sites. Certain smells made her nauseous, and there are still foods that don't taste right to her. She lost her love of chocolate (says it tastes like styrofoam.)

You will also have watch for depression. Some people on interferon experience depression in all of its many forms. So make certain your mom is constantly talking to her doctors, nurses, and the support people at Schering-Plough - the company who produces the interferon for Hep C, as well as to you and any other family and friends she sees as support.

Schering-Plough has a web site set up specifically for the patients and family members of patients on the medication. They probably have a whole host of support suggestions I haven't even thought of. I do know there is 24/7 support available through the site and they provide a personal nurse councelor for each case. Your mom should be given the info through her doctors, but if not, she can register on the web site. - We only wish all this was around when my Mom went through it.

It will definitely be a huge help to your Mom to have you clean for her. She will most likely be exhausted for the first couple of months (possibly through the whole treatment). Just make sure what you use to clean doesn't trigger her nausea if she has any - or that you are able to clean while she is not home. Cooking is a great help, but you may find that your mom becomes a very picky eater. At one point my Mom was all about things with starch and salt. I swear my Dad kept her alive through mashed potatoes and french fries. Her doc told us to give her whatever she wanted since she was only eating about 1000 calories a day on the good days.

Bring your son to visit by all means (if your Mom is up for it) but encourage that time for quieter games. I recommend reading aloud (your Mom or you to your 4yr old) and puzzles. When your son is feeling super active, if possible have him play outside with you where your Mom can watch from a sitting or reclining postion. It will let her be a part of her grandson's life and will help keep things positive.

Amazingly, except for the weird dislike of some foods and smells still, my Mom bounced back to her normal active level very quickly after ending treatment. So while the weeks during treatment are tough, your Mom should find herself feeling pretty great when it is all over if it is succesful. If it isn't a success, watch carefully for the depression that will come with a negative result. I wish you both all the best and hope that this is as successful for her as it was for my Mom. Good luck to you both.

1 mom found this helpful


answers from Boston on

I started treatment Jan. 5th 2009
The 1st shot I took was a little rough and I had some chills and a high temperature. The pills tend to make me groggy and sometimes I get tired doing small tasks.
The second shot I took 2 days ago. I was tired but my temperature did not go up this time.
I think o the light at the road and try not to concentrate on the next 5 months which how long my treatment is.
The treatment is rough yes, however, it is better than the alternative which could be liver cancer or cirrhosis.
The best therapy I have is speaking to loved ones and keeping an open dialogue with my doctor.
I think I am lucky considering the other ailments I COULD have had and remain positive everything will work out.

1 mom found this helpful


answers from Philadelphia on

2nd time treatment. had to stop 22nd week in march 2010 for mandatory surgery. now in 7th week. listen to your doctor. mine told me no broccoli,asparagus,cabbage. DID NOT READ SIDE EFFECTS LITERATURE!
gave to my wife so she could monitor me and review week with me when i inject and record in log book. my nurse calls me weekly to see how i'm doing,
also biweekly blood work. i drink protein drink with my ribasphere 600 mg 2X day. good luck. : - ) NO ALCOHOL



answers from Fort Collins on

My son has gone through the Interferon and it is very hard to watch.

They get very week and sick, and no your little one will not be a distraction.

Your mother will be miserable and I hope it helps her.

My son is about to go through his second regime of Interferon, and none of us, including him are looking forward to it. He is now in stage 4 level 3 and needs a new liver period. But they must try the Interferon again before he is put on the list.

Good luck to your Mother, love her and be there if she needs anything. Don't take offense at her shortness or impatience. It is just the treatment talking.



answers from Salt Lake City on

The best thing I ever did for myself was the Interferon treatments. It has been years, but what I remember is that there were days that I was tired and didn't feel much like eating. The treatment was not as bad as chemo. Let your mom decided what works best for her. I would recommend that she gets to create her own meals simply because she will know what food works for her. Thanks to the treatment I am now Hep C free. (Though they will still not take my blood for donations).
With my whole heart, C.



answers from Denver on

I don't have any experience with Interferon, but I do have an active grandson about the same age that I adore. However, when I am not feeling well, I can only handle a short visit from him because he does tire me out. If you could find out from her doctor what she should be eating during the treatments and then make up a bunch of meals and freeze them for her, stop by and get laundry and take it home, regularly check the library and get DVDs, books on tape etc for her. Does she belong to a local church? If so, maybe there are a few ladies her age that would be willing to come and sit with her and watch a movie etc. I'm sure most of all, just knowing that you are close by and willing to step in and give her whatever help she needs will be of the greatest comfort to her. I pray that the treatment goes well.



answers from Denver on

I gave myself my last interferon shot on August 26th, 2005, and I am clear of hep c. My genotype was easier to clear and my treatment was only 6 months. My children were 8, 5 and 3 when I started.

Treatment is not the same for everyone - some people skate through treatment without many problems, others feel worse than they thought they ever could.

For me it was difficult - I was tired, drained, CRANKY, listless, and I had insomnia. Then there was the isolation and depression. It can get really dark and ugly, and, if no one notices, it can become very dangerous. Suicidal ideology is a side effect of the treatment. Talk therapy can be helpful.

I didn't lose my hair, or much weight, but I was in bed a lot. My sister and some friends came over every saturday and cleaned my house - some other people made dinners for my family. It was hard to accept the help, because I didn't want to be a burden, but people refused to take no for an answer.

One thing that helped me was a hep c online support group called Janis & Friends. So many people on the message boards were knowledgeable and supportive. I strongly reccommend this group for both you and your mother. A lot of family members participated on the message boards.

There are many support groups and your mom's GI dr. can provide names of those in your area.

I had the best possible outcome - a life free from hep c. I hope that is your mom's future. You & your mom will be in my thoughts. I wish you the best. Please keep us all posted.



answers from Salt Lake City on

My Granma is going through her second bout of Chemo :-( the best way to help out is to ask what they need! Sometimes they want to be left alone, sometimes someone to talk to, sometimes they need help with laundry. Just be there for her and be open about your desire to help out!

Maybe switching over to more natural products will help also! Since they will be filling her body with poison, the last thing she needs is more in the home! here's a site on some more info on toxins in the home. I'm partnered with a wellness company that has over 300 products that are all natural, safe and non-toxic. I can show you how to get them direct from the manufacture for 30-40% off retail! If this is something you're interested in, message me!

Good Luck, My prayers are with you and Your Mom!
WAHM of 2 girls. Helping familys make their home more safe!



answers from Denver on

First, I am so sorry that your mother is going through this. My father went through the treatment about three years ago and the thing I remember the most was him being very tired and sort of uncomfortable. I think your Mom will make the call and need to tell you what works best for her. She may enjoy the distraction of a grandchild or it may be too much activity. I think you being there for her will be the greatest help of all. Good luck and I hope all goes well for your mother.



answers from Colorado Springs on

My stepmother-in-law just finished her therapy at the end of the summer after a grueling year and a half of interferon. I will not lie and say it was easy, it was the hardest thing she had to go thru and she actually went thru 2 rounds because it didnt work the first time. She lost a lot of weight and had no energy, she couldnt go outside much because the medicine makes you sensitive to sunlight and she was tired all the time. She stopped treatment the 2nd time because she couldnt do it anymore, it has been 6 months now that she stopped and she says she can look back now and see that she wasnt herself the last couple years. She is on an all organic diet and doesnt eat anything that her liver will have to work hard for. She is doing great now but will not go thru treatment again, she is on a transplant list but not bad enough to be anywhere near the top. I could sugar coat it for you but you need to know what COULD happen not that your mother will go thru this, she could have one round of treatment and have it work and not go thru it again so just read as much as you can on it and find some online groups for your mother to talk to other people going thru the same thing, that really helped my mothr in law alot. Good luck

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