Skip to content

Announcements

Newly diagnosed? See our Hepatitis Health Center to learn more about it.


I've had HepC for 30 yrs
avatar
showdown posted:
Does anyone else in Stage 4 HepC feel tired all the time. And painful bones and muscles? My doctor hasn't told me much of what to expect. Is this attributed to HepC. I only found out I had it 6 years ago. My sleeping habits are terrible, I sleep during the day because I'm so tired but stay awake at night. Are these all to do with HepC. I've only recently found a good HepC doctor and he flashes in and out of the room in few minutes never asking me questions, and I feel I don't have time to ask him, I get confused on what to ask. I always think I'll be prepared next time but I'm not.
Reply
 
avatar
rubystar2 responded:
When you think of questions or concerns you would like to address with you doctor, write them down in a small notebook,leaving room for writing down the answers. Take this little notebook with you to the doctor so you will remember what you wanted to ask. Maybe when you schedule your appointment, let them know you want to ask some questions so maybe they can schedule a longer appointment for you to allow time for discussions with your doctor. I wish you the best of luck.
 
avatar
oldtiff47 replied to rubystar2's response:
AND TO ADD TO RUBY ( WHO TOLD YOU SO WELL WHAT TO DO ) ....TAKE A FRIEND...A FAMILY MEMBER WITH YOU...WE ALL NEED ANOTHER PAIR OF EARS WITH US...YOU MUST GET YOUR SLEEP IN THE RIGHT ORDER TOO...SLEEP IT DOES THE BODY SO GOOD.....THAT IS SO IMPORTANT ...MOST DO NOT FIND OUT FOR DECADES THEY HAVE IT IT IS NOT A NORMAL LAB TO BE RUN...

I AM A STAGE 4 WHO WAS SO VERY LUCKY TO CLEAR 10 YEARS AGO...AND WE HOPE MY LIVER IS NOT GETTING WORSE AND THEIR IS A CHANCE GETTING BETTER....

I HOPE THIS HELPS YOU

TIFF
 
avatar
01588 replied to rubystar2's response:
hi,i was infected with the hep c virus,please excuse me,of my spelling!i was on my last stage.of liver dessice ,i was makeing regular visit to the hospital.then i was put on a liver trans plant list,during this i waited and one night i was in bed sleeping,the phone rang and they said come on in,we have a liver for me,i walk out of the hospital in 12 days.it was no pinic but it was well worth the second chance,now they think i have cancer but i hope i will be lucky again.also i forgot to tell you my old liver was full of cancer.i would recomed a teaching hospital!good luck!
 
avatar
jackietruitt responded:
Very important to expand relationship with your doctor. ALWAYS be sure he takes time to talk with you and explain things thoroughly. My doctor was great! He always spent time discussing the disease, treatment and how I felt at each appointment. The whole time I was on treatment, I never let myself miss a day of work. Doesn't mean I was always 100%, but I was there. Had to make myself get up and do things on a daily basis because I was SO tired. I would try to do grocery shoping and would sometimes just have to leave my buggy half full in the middle of the isle and go home to lay down. It's okay....do what you need to in order to be well. I found that taking "cat naps" (15-20 minutes) when I needed worked out well. Rest in some fashion when your body tells you to. If those around you know your situation, they will understand and respect your decision for a quick rest. Good luck.
 
avatar
oldtiff47 replied to jackietruitt's response:
JACKIE SO VERY WELL SAID THANKS FOR JOINING IN...

TIFF
 
avatar
01588 responded:
hi,please find a doctor that he only sees hep c patients
 
avatar
01588 replied to jackietruitt's response:
was a luckey one,it was a year ago that i had a transplant! thay told me that the hep c is their but is dorment.this was a blessing!now i have cancer and they cant find it,they say my tuma marker are going up,i am have more test.do not drink any thing that has alcohol.and may be you do not haveter go through what i have gone through.keep positive!
 
avatar
showdown replied to rubystar2's response:
Thank you all for your help and advice. Rubystar2 I have started to make notes for my next visit. I hope you test ok and are well. You all gave many things to think about and I learned alot. I wanted to respond sooner but I couldn't get logged in. I really appreciate your comments. I have heard that your sleep habits sometimes get reversed and you sleep through the day and are awake at night, thats what I find happening to me lately. I didn't know that sometimes your liver can get better on its own, that's encouraging. I hope you all stay well and get the proper treatment you need. We're all in this together. I don't feel so alone now. Thanks.
 
avatar
showdown replied to 01588's response:
I just tried to reply to all your helpful advice. My posting didn't show up, I am trying again. I'll keep this one short, maybe it takes time for your post to show up. I have learned alot from all your responses. Thanks so much to all of you.
 
avatar
Goldstarr responded:
I also have had Hep C for along time. (25) years. I do pretty well most of the time ,but like you I tire very easily.I am now 66. The Hep has not worsened, although many other medical problems have surviced. My doc @ OU medical center says I will probably die with it instead of because of it. My enzimes are high,but since I am over weight(although not much) he doesn't feel meds are for me. I just wish they could have detected the virus before my transfusion, back then but oh well with Gods help I continue to live and enjoy life.
 
avatar
justameinpa53 responded:
Dear, shodown.. I know this is a little after the fact. I was Hept C - 1A stage 3 fibrosis. I am 56 years old now and was 120 lbs over weight when I started treatment.. I did the 48 weeks of treatment and will be SRV for 1 year on Mothers Day. Hept C has many of the same symptoms as Fibro Manilgia. The aches, joint pain, exhustion, reversed sleeping patterns ets. Hept C also crosses the brain barrier and causes "Brain Fog" , lack of concentration and depression. You found a "Hept C" doctor which I hope is a GI Specialist. Finding a good one is difficult ! Unless you live in a Large City where they treat a lot of Hept C patients most GI / Hept C Dr's are not familiar on how to deal with us or treat us. It is still a relatively new Condition with a lot of negative stigma attached to it. If you current DR. will not spend time with you to answer your questions or educate you on your care then please find another one.

Yes you diffenatly should take someone with you to your appointments. It is difficult to keep everthing straight.

You did not mention what your viral load is or what geno type you have. Have you ever considered doing the treatment for Hept C? Other than clearing the virus one of the side effects is that it can reduce some of the fibroious.

There are numerous supplements that can help support your liver functions and a proper diet can be a really big help.

There a lot of great on line support groups that have a lot of information to share and to get your questions answered.
 
avatar
showdown replied to Goldstarr's response:
Goldstar, I'm glad to hear what you had to say. It's too bad your doctor won't give you any meds. Do you think you need them. I've heard severe pain in the joints and muscles require pain medication. I don't know what to expect? Good luck to you.
 
avatar
showdown replied to justameinpa53's response:
justameinpa53, this is showdown. I'm thankful for your input. I don't know what viral type or gnome I have. But I get pains. I was advised not to take interferon since I am bi-polar and very depressive, and interferon makes that quite worse. Some people get suicidal on it I'm told by my Dr's. I just hope I don't have to live in pain. Hope you take care of yourself and thanks. I do have brain fog and sleep reversal.


Helpful Tips

Sex and HCVExpert
Since this is understandably such a frequent question, I am leaving up this information. Sexual contact, whether it is genital, oral, or ... More
Was this Helpful?
53 of 61 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.