Hep C Discussion Forum

lauralou57 · Senior Member

RE: Liver appears good...but so much fatigue

Loopy Lisa · Guru

Muscle aches are much less since I cut out sugar, I feel 100% better. I actually have the idea that sugar is pretty bad for us. My skin is looking really great since the lack of sugar. I read somewhere that sugar is a breeding ground for Hep C, so cutting it out seemed a logical step. The sugar step has been just over a week, and with it I removed bread totally. I bloat with sugar and bread as since I stopped using either, my digestion has gone back to being decent again, no bloating, no pain, and I think I must have lost some weight as my clothes are fitting a little on the loose side appossed to snug. I was told to eat what I want, but I wonder if diet and Hep C should be investigated more closely. I will carry on with how I am moving forward and I look forward to seeing if this has any impact on my virus levels at my next blood test before treatment. I do think Hep C does play a huge part in how we feel, but also the effects of certian foods on our bodies with the Hep C virus.....just a thought!

My Doctor is very pro treating type 2 and 3 because of their high success rates. She did say that for 1 and 4 she wouldn't push to treat if they had time to wait for the newer meds. Why, because the treatments are so hard to take and lower success rates. She did mention to me also, if I didn't want to treat there is no medical need, but treatment is availabe if a patient wishes no matter what type. I do think that is fair as not everyone wants to go through chemo type treatments......

-- Edited by Loopy Lisa on Wednesday 28th of August 2013 07:39:23 AM

Matt Chris · Guru

Hi Marcy, belated forum welcome to you

With your age and stable condition you should be able to wait for the all orals in the next couple years. If the poor energy continues to get worse you want to consider the 12 week Sofosbuvir with Ribarivin and Interferon when it get approved in 2014. Also your diet has a big effect on your energy levels as we age, so be wise about than as well.

Matt

Kellie · Senior Member

Good point B. The future of healthcare in the U.S. is very uncertain, let alone the world.

I think whatever the future, there's an epidemic of folks that have this virus and don't even know it. The stigma is still there. So most folks don't even want to be tested. It takes a CDC intervention to get docs here to begin routine HVC testing of baby boomers. Shame, shame.....

I believe the U.S. healthcare system in the next 20 years will be taxed and overrun with ill hcv+ folks and the system will have no choice but to be more aggressive in treating regardless of age or ability to pay. Anything less will be akin to, I hate to say, genocide. Exterminating a whole group of folks by denying treatment to the poor & aged. Scary thought and I don't think that will happen. Well I hope not.

http://lucindaporterrn.com/2013/07/hepatitis-c-one-world-many-faces/

I'm so grateful and blessed to have the opportunity to do this now. Good subject B!

-- Edited by Kellie on Tuesday 27th of August 2013 06:09:44 PM

Tig · Admin

I agree Kel. If you can get treatment approved I think it's worth it by all means. Here in the US with the current upheaval in health care benefits, who knows what will or may not be approved by the next set of decision makers. It's entirely possible that with age, the older groups of patients may be denied or placed on a lower priority list. It's entirely too difficult to say right now. Everyone should weigh all the options and opportunities that are presented to you, when they are given to you. A few years from now can mean many different things IMO!

Jumpy · Member

Hi Marcy, I am similar to you, I am 59 and have had HCV since my early twenties. I have slight fibrosis and am into the eighth week of the Abbvie Sapphire Trial. I have been undetected since week 4 and the main thing that I notice is that all the muscle and joint pain which was a part of my everyday life has suddenly disappeared! Now that its gone, I realise just how bad it was. As for the exhaustion, its hard to make a judgement because the main side affect I am experiencing is exhaustion from the ribavarin but I am optimistic that when I complete treatment that this will also improve.

I got myself onto the Abbvie trial by being persistant, I enlisted my doctor and asked for a referral to a hepatologist involved with the drug trials and and also called various clinics that I knew were undertaking drug trials. It took me about 6-8 months in total to get onto the Abbvie trial.

Hope this helps.

M

Kellie · Senior Member

I talk to a lot of folks in my circle that have HCV and are asymptomatic (for now)and I'm always surprised when they tell me their dr. says they don't need to be treated. That's crazy talk in my mind, bordering on malpractice.

I was "without symptoms" for 30+ years. I believe I controlled a lot of the sx with daily exercise and diet, along with a few nutritional supplements.

I had tons of fatigue and aching bones still though, which the drs. always told me was caused by something else: menopause, overwork, stress. I believe now that those sympts were the result of HVC and the gastro group treating me now believes the same. I'm glad to be treating it now while I'm healthy. Lord, if I had to do this at 60. No way.

Much of the way drs. roll on treatment will change in the next few years. I just hope the crazy talk of not needing to be treated will dissipate, with the advent of newer easier tx.

2oldman · Member

Hey Mill....

I'm also 1a for 40+ years, good liver, with normal enzymes. I'm a non-drinker and exerciser. I'm 65 and the last doctor told me I don't need to treat. I was high on that news for a few months until my latest round of aches and pains appeared.

I've had minor foot neuropathy since 2000, but it's getting much worse. Walking is becoming uncomfortable - I can barely walk in stocking feet as my big toe joints are so stiff and achy. The doctors will not connect the PN to Hep C, but I think there's no other conclusion.

Loopy Lisa · Guru

Hi all,

Sorry perhaps that was misleading, I am booked with my hospital to start with the Gilead drugs as they should be available early 2014 in the Netherlands (all being well) as they are fast tracked over here like with the FDA.

I found out I had Hep C during a IVF investigation. I can have the IVF as long a the virus is gone. Next year is my personal cut off point for waiting to clear and carry on with that.

:)

Tig · Admin

Hi, I also wonder how you got booked into the Gilead drug treatment? Are you accepted into one of their trials? The fact that you have no apparent liver damage is fantastic! With that in mind, you're probably years and years (or more) away from the severe problems you fear. I mention this because you said you would opt for the Interferon and Riba treatment. You seem very aware of your health and well being and that's to be commended. The new treatments on the near horizon are extremely promising and the success rates are in the high 90 percentiles. Those rates aren't as high with the Peg/Riba combo and speaking from experience, the side effects of that stuff aren't pleasant at all. I must question why you would want to put yourself through that? I understand the desire to be virus free but it would be so much easier to go through a 12 week, side effect free treatment regimen. If I were given that choice of going through this Peg/Riba treatment or waiting another year or two for the more promising treatments, it would be a simple decision. Whatever you decide, I wish you good health and success!

Milliganus · Senior Member

How do you get "booked" into treatment with the new Gilead drug. I've done a little research on clinical trials, but it's all very overwhelming.

Loopy Lisa · Guru

Hiya,

I have had Hep C an estimated 20 odd years. I too have fatigue, muscle and joint pains, a paralysis in 2005 (probably due to Hep C as no other cause was found) that I recovered fully from and I get brain fogs too (diagnosed this year with Hep). Saying that, I flit in and out of this I can have days I feel like a spring chicken and other days a 90 year old lady. I have type 3, no visable liver damage or fibroses, everything is working as it should apart from digestion problems.

Treating is a very personal issue for everyone. I am booked to start in March 2014 with the new Gilead drug (if all goes smoothly as expected). If not, I will opt for Interferon as living with something that you don't actually want feels more of a burden than the actual symptoms of the disease in my mind.

I have found that resting is important when I have a real dip but diet, and exercise has made the world of difference since 2005.

I find soft drinks make me sluggish as well as processed food, I still eat them but not like I did years ago. I really cannot tolerate a lot of dairy, I feel so bloated and uncomfortable, also with lots of bread etc. I have read this is quiet common for people with Hep C as it does affect the digestive system in a lot of people.

I don't know if that is any help, but I wish you the best, L

tomyboy · Senior Member

Hi and welcome. Lots of new treatments in the works and will hopefully be approved next year. Good news that your liver is working good....Next year just may be your chance for treatment. Best of luck and good health during your journey.

Laura

Milliganus · Senior Member

Karen---That's great news! More energy is wonderful. The last Dr. I saw in Cleveland Clinic told me I never need treatment unless my liver gets worse. I am 1a also and think I will do the new treatment when it is approved as my stiff/achy fingers, knees, ect. with the fatigue are getting so bad. Quality of life going down. Keep us posted about how you feel. Seems lots of these Dr's don't give much of a hoot as long as the liver is ok.....

Kellie · Senior Member

Hi and welcome! I was in the same mind space - do I wait or do I go for it again? Same as edmed, the quality of my life the last few years was poor. I was tired all the time and depression was beginning to set up shop in my brain more days than not. There was also no guarantee my liver wouldn't start getting fibrotic and cirrhotic. I had done the treatment in 03' and responded well for 11 weeks. The sx became too much and I was discontinued. Probably better off as 1a's didn't have very good odds at achieving svr with just riba & interferon. Spent the last 10 years taking really good care of myself. But the fatigue and depression we're the driving force to plunging in again. Also meeting a really supportive medical team promising to get me through it again made the biggest difference. I'm on week 14 out of 24. The treatment has been challenging to say the least but I'm tired of waiting to feel better. I'm looking forward to the next 50 years as being full of health, happiness and energy. Best to you! Looking forward to hearing more about your journey. Kel

edmed · Veteran Member

Hi Marcy, welcome to the forum. I'm 51 now and when i was young i experimented with hard core drugs. Somewhere between the age of 17 and 22 i contracted hep c. In 96 i went on TX followed by 04 and now in 2013. The fatigue after all the year of knowing of my hep c symptoms is what made my decision a little easier . The last couple of years i kept asking myself how long do i wait for new meds. ready or not i decided to start treatment again in 03/01/13 and its been up and down but when i think of the last couple years of my quality of life, it worth giving it a try again. I wish the best of luck.

Cinnamon Girl · Guru

Hi Marcy, welcome from me too! I also felt like you do for many years before I finally did my treatment when I was your age. In fact I delayed doing it for a long time worrying about how I`d cope with the side effects, but I can tell you it`s made so much difference to my life and has been really worth while. I was diagnosed with CFS (Chronic Fatigue Syndrome) in the mid 90`s, and received my diagnosis of HCV at the same time, although my doctor wasn`t able to tell me whether my symptoms were connected. Although I still have to pace myself fairly carefully, my quality of life has improved immensely since I cleared the virus, and virtually all of the aches and pains have disappeared. If I`d realised that so much of my fatigue and other symptoms were caused by the Hep C I`d have got on with treatment much sooner!

I would certainly recommend looking into treatment! Best of luck with whatever you decide.

mallani · Guru

Hi Marcy,

Welcome to the Forum. Fatigue and muscle/joint problems are often found in chronic HCV. Remember that the virus does not only attack the liver, but can cause problems in a lot of other sites. You've had the virus for a long time and are getting older- do not wait too long if you want to be HCV free. It's always up to the patient to decide whether to have treatment, but if you want to be free of your symptoms, you need to have treatment. The current triple therapy would give you an excellent chance of a 'cure'. After SVR, many patients become free of the symptoms they have had for many years, but it's up to you. Remember, HCV is a progressive disease. Good luck.

Karen · Senior Member

Hi Marcy,

I am also 1A...My liver is in pretty good shape-I too refused the current treatments and would still today. When I was presented the opportunity to treat with the new Gilead drugs -I made the difficult decision to move forward. I can tell you that I never realized how sick I was, how totally exhausted and how much i pushed myself until I was undetected. I am still tired but not wiped out...I have 12 weeks to go of 24 and it will be very interesting to see if I come out of this healthy and second, if my energy will ever return to its fullest. Either way, I would go through this treatment again just to know what it is like to feel so much better...plus a lot less brain fog.

I wish you all the best going forward...

Milliganus · Senior Member

I'm 1a so I don't plan to go on the current Therapy. Not sure if I'll go on the new one when it is finally approved. One doc said I should, one said I didn't need it as my liver looks good. None of them seemed to have any suggestions or solutions for these other symptoms

tonib · Senior Member

Yes I was/am tired most of the time....have been for years...but now that I started the therapy I am still tired....maybe more tired .....dont' remember cause now I have the fog in the brain...anyway I am HCV geno 1 am taking peg interferon and ribovarin presently and in about 3 weeks the victrellis starts....so it will be triple therapy. I just turned 60 and I have had this for @30 years....

Are you gonna go on a therapy? or are you one one?

AngieV123 · Senior Member

Hello! I have had hcv my entire life (I'm 32) and the last few years I have been so fatigued and have had joint pain and more headaches. To my knowledge I do not have any major liver damage. I think that being tired is a huge symptom of hcv especially if you've had it for a long time.

Milliganus · Senior Member

Had a liver biopsy b/c I was having lots of weird symptoms. Had Hep C for 35years. Liver appears to be good (0-1). No RA was found, yet I continue to experience extreme fatigue and pain and stiffness in joints. Do any of you have these? I assume the virus is the cause, even if liver is fine. Any suggestions to minimize/get rid of these symptoms?

I'm 61 and feel like I can barely drag myself around much of the time.

Thanks

Marcy

Genotype 1a

VL 2.5 mil

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