Hi Marcy,

I am 57 and I have had hep C since 1977 but I did not know I had it until 1999 when I was diagnosed. As I have gotten older I want to sleep more and more every night until now I am not totally rested unless I sleep 10 hours a night. I work for the government and do technical work (all on the computer) and I managed to get a medical telework because of my hep C. Then I did not have to do a long commute to get to work and had time to sleep 10 hours every night. I had to go to a lawyer and get a letter from my hep C doc. I also hope to get treated in the next couple of years but I thought I would share this with you. 

Hi Marcy, 

Sublingual vitamin b and especially b12 may help with the fatigue. 

Hi Marcy,

You are in a great position.  You have the medical information to get into a clinical trial and a way to get near a trial center.  The new trials are only 8 to 12 weeks.  For instance, In Texas, where I live, there are 2 trial centers near Dallas, one in San Antonio, one in Houston and lots of RV parks.  My only contact with my trial center prior to screening was by phone.  I sent all my medical info in and when there was a possible opening, she called me. I did not go through a doctor.

The people I know that got in a clinical trial either went directly through the center or knew a very well connected doctor.  The testing site decides who they call for clinical trials.  If you are not on their list, you don't get called.  I got my testing site from clinicaltrials.gov on the internet.  There are no side effects from most of the trials that do not include interferon or ribavirin.   Get on the list at several site centers ASAP.  You can always refuse a trial. 

Good luck

SuziQ     

Hi Marcy, 

Thanks for posting that additional information. I have to say that after 40 years of chronic HCV activity you have a remarkably healthy liver. Your biopsy results show little damage at all. From the biopsy results alone, I would believe you could wait until an interferon free treatment program becomes available to you. The newer treatments now are significantly shorter in duration, especially for non cirrhotic patients. Since you and your husband reside in a RV and enjoy life on the road, the 12 week treatment program would certainly fit into your lifestyle better. You could easily stay in one state for that period of time and complete your treatment. It would help you in the event you were accepted in a trial as well. I hope your husband is feeling better. That may help you regain some of your strength as well. Being a caretaker is a difficult but rewarding job, but it also can be very tiring. I hope you can both get back on your feet, get rested and then make a plan for your HCV free future. Good luck!

Thanks for all your input!  I filled in more info on my signature as suggested.  One of my challenges is that we no longer have a permanent residence and are traveling in our RV full-time.  This has been ok because my husband has had medical for the last 2 years and we've been able to travel to various places for his treatment.  But, on the other side of that, I have been his caretaker, not so much taking care of myself.  Anyway,  as a result, I do not have a primary Dr who manages anything.  I know this is a problem, so we are looking for a place where we can have some kind of home base.  I am really looking forward to getting treatment, but I do not want to use the interferon so I'm holding out for the approval of the duals.  As Mallani said, I know I need treatment, but my husbands medical has overshadowed everything else.

Thanks for the care you all show when I post

Hi Marcy.

I have not been on this forum long, but the help that is available here is fantastic.  HOWEVER, it is difficult to get the help without a few more details than you have given.  Where do you live?  In the US, there are going to be a lot of clinical trials without interferon during the coming year.  Have you had a biopsy ?  Do you have a doctor?  If you click on user details and fill out the signature portion, it will help us a lot. 

I am 79 and doing a clinical trial without interferon.  Different people respond differently to Hep C.  I did not have a lot of fatigue. My screening and my biopsy for my trial showed that I do have early cirrhosis.  I was lucky to get a trial in a short period of time.  There are alternative supplements that one can take and I have used them.  They did not stop the damage to my liver from going into cirrhosis. 

I have found over the years that it is important to be your own advocate when one has Hep C.  Many doctors simply do not have the information on it and really are not "up" on the latest information.  I do agree that treatment is the only real answer.  That is why I am doing treatment at this age. 

Let us know more about you.

SuziQ   

Hi again Marcy, sorry to hear your fatigue is getting worse.  I know you`re having a real struggle and everything must seem quite overwhelming to you, but I think it`s quite likely that a lot of your symptoms would get better if you could get onto a course of treatment and clear the Hep C virus.  That has to be a priority, in my opinion.  From my own experience, my extreme fatigue has improved quite dramatically since I achieved SVR, and the same goes for the aches and pains I had been suffering with for years.  I was also 61 when I did my tx.

Do you currently have a regular GI or Hepatologist who is monitoring your liver health?  If you do, you should talk over your treatment options and ask about any clinical trials available with travelling distance. 

Wishing you all the best of luck! 

Hi Marcy, I'm sorry to hear that you're so tired. It's a common complaint with HCV and can be difficult to understand. Some people aren't bothered by it at all and others, like you, are experiencing too much. I gather from your post that you aren't on any treatment program at this point, and wonder if you've spoken to your doctor about this increasing fatigue? When did you have your last blood testing done? It may be a good idea to find out what your body is telling you now. If you're not ready to start treatment, perhaps your doctor could make some recommendations on diet, hydration and exercise to get your metabolism boosted in the right direction. You also need to get as much sleep as you can during these periods of exhaustion. Your body is telling you it's tired, listen to it! Aside from that, I'd like to see you eating a good balanced diet, it's not easy but it's very important at this stage. The other super important thing you must pay attention to is hydration. If you're not drinking enough water, not sugary sodas or caffeine enhanced drinks, WATER and nutritionally supportive fluids, you may be starving your body of the fluids it needs to run. Every one of us going through this has learned the importance of it and I would suggest you start there and bring it to your doctor's attention next time you can get in. Good luck and stay in touch!!

Hi Marcy,

We've been telling you since April, that treatment may cure your problems, as HepC is probably the cause of your lethargy, PN and arthritis.  At your age, with such a long history of infection, things will only get worse.  It's up to you- I'd be finding a competent Hepatologist and demanding Rx.  We've told you this on your previous posts.  Cheers.

Hi all,

My fatigue is increasing to the point that some days I can barely do anything.  I'm hoping to do the newer dual treatments when they are approved in 2014 but until then, I'd like to continue with my life.  What do you all do to help with fatigue symptoms?  Laying on the bed all day doesn't seem to be a very good option. 

Thanks!

Marcy

61 years old

Geno 1a-40 years