Hep C Discussion Forum

perry · Veteran Member

RE: New to the Discussion Forum

OldenSlow · Senior Member

Dario,

I've been cirrhotic for a number of years. You could be right about the stamina, but I do train more for stamina/endurance than for speed, so maybe it's a wash for me. My time drops over the years have been consistent with the ageing curve, for the most part. Happy to win my age group in the local events. Never a speedster, anyway. Seldom push beyond 75 minutes on long runs. All in all, just happy to run. smile

You asked about the Riba Sx earlier. I'm early in third week of treatment. Only real issue has been a general restlessness/sleeplessness at night. I hate sleep meds, but caved and took one the other night because lack of sleep was making me dingier than hell. It helped and I may have to fall back on them again before this is all done.

I'm mildly concerned about potential anemic consequences. Hemoglobin dropped a full point at the two week lab check, but still in normal range, so I've got some room to move on that. If, ultimately, the running suffers from tx, I'll deal with it. I'm very much intrigued by what life might be like without the virus. It's been so long, I've almost no memory of being virus-free.

Keep truckin', Dario

Wayne

Dario · Newbie

Hi Wayne

Great to 'meet' another runner. Agree about training smart, it's all about rest days and listening to my body. Some days it feels effortless, even at a fast pace, other days a jog is a struggle. I also have no idea what effect, if any, HCV has on running. I'm guessing that cirrhosis, even if it is compensated, has to have a negative impact. My suspicion is that speed probably isn't affected much but stamina is, so anything that involves running for more than an hour, roughly.

I'm hoping I get on this Gilead trial, I've read some astonishing results, clearance rates in the high nineties (percentage wise) even for those who have failed TX previously and who has cirrhosis. I'd love to try an run an Ultra or two, if my liver was up to it.

Hoping your trial continues to go well, even if anaemia does slow you down - in the long run clearing the virus will work wonders.

All the Best

Dario.

OldenSlow · Senior Member

Hi Dario,

New here and also a runner, so thought I'd kick in my 2 cents. Been running with HCV forever, it seems. My race times (5k's, 10k's, a couple of half marathons) have always been a function of my training and managing to stay injury free. Whatever effects the virus has had... well, I honestly wouldn't know. Maybe I'd be world class without it! biggrin One thing I have figured out is that the need to train smarter, avoid injury and allow for adequate rest increases as I age.

Winding up my second week of treatment (Sovaldi, Olysio, Riba) and it's had zero effect on my running to this point. I am unsure what the future will hold, however. Should anemia become an issue, then clearly I'll feel it and will have to adjust accordingly. I have my fingers crossed that I will be able to skate on through treatment while keeping the training schedule intact. If not, so be it. Beating the bug is job #1.

Good luck, my friend. I wish you well.

Wayne

Dario · Newbie

Thanks for the warm welcome and the information.

If I am confirmed on the Gilead trial I will keep the board appraised of my progress. I didn't know it was such a sought after trial, though I guess the price and success of sofosbuvir make a trial place attractive.

I doubt I will be able to run through the trial, if I secure a place. It's just impossible to do anything physical with anaemia. What I will be be very curious to see is what effect clearing the virus has - should I be fortunate enough to achieve that.

I am a very firm believer that diet and exercise can play a major part in keeping the symptoms of HCV at bay. Put it this way I actually feel fitter and healthier now than I did 10 years ago, even though I didn't have cirrhosis back then. I was eating all wrong and not exercising, as a result I was tired all the time.

Riba Rage sounds worrying, I'm pretty short tempered as it is!

Matt Chris · Guru

Hello Dario

Welcome to the forum from me as well. Good to hear that you have enrolled in the Gilead trial, that is one of the most desired trials on earth. Hoping all goes well, the side fx's with Riba can include being more tired and fatigued during parts of the day but its very easy for most. The worst part is "Riba Rage" that can flare up once in a while.

Hoping the best in your future.

matt

Gator Man · Senior Member

At 53, I am a runner and average 15 to 25 miles per week for the last five years. I've posted local standard age group times at 10k but would not call myself particularly competitive. I also do the occasional half marathon and starting to train for two upcoming triathlons. I was recently diagnosed with compensated cirrhosis, which was somewhat of a surprise given the level of physical activity.

When I had my failed short term six week course with interferon and ribavirin in 2002, I was an out of shape, overweight, non cirrhotic (F2) pack a day smoker. Cirrhosis and 12 years aside, I certainly feel better today and hope my lifestyle changes (decent diet but not a vegan) will make an overall difference in future well being, especially if I can "slay the dragon".

So far the Sovaldi/Olysio without Riba tx has resulted in no side effects or impacted my training schedule. Work has been the bigger obstacle. In 2002 I wasn't on interferon or ribavirin long enough to suffer from any anemia, but the overall sx would have prevented any demanding physical activity.

Running and exercise are a significant part of my life and I plan to maintain the current level as long as I can, hopefully only slowing as a natural byproduct of age and not cirrhosis or other debilitating disease. As a new member of this forum, I gain inspiration from reading posts from Mallani, Cinnamon Girl and others that there is a lot of life left to enjoy after our Hep C battles are won or even while we are still engaged in the fight.

-- Edited by Gator Man on Saturday 1st of February 2014 04:31:32 AM

Gracie · Guru

Hi Dario,

I am a runner. Not marathons but 5 - 10 km usually 3 times a week. Unfortunately since I've started treatment I'm just too winded. My friends all run still and I miss it a lot. I didn't think I had many symptoms although living with it for so long it would be hard to know. I always found running made me breathe better.

I've had anemia, and low platelets since I started 5 weeks ago. My nurse said that means the meds are working so I'm great full for that. I was treated 13 years ago and failed treatment.

We will ditch this virus, and run off into the sunset feeling better than we have in years! I'm sure of that!

suziq · Senior Member

Hi Dario,

Good to see you found the forum. Didn't know you are a runner. My son held worlds record for double triathlon for about 7 years back when he was younger. He is also a vegan. He used to "carb up" the night before races. But he didn't have Hep C like you do. Congrats on your positive attitude and stamina !!!

Looks like Mallani has already responded. He has such good knowledge and information. I think you will enjoy this forum. I really like it and have found the people extremely helpful and caring

Also congrats on your clinical trial.

SuziQ

mallani · Guru

Hi Dario,

Welcome to the Forum. I hope you get a place on the Trial, as that's a great drug combo.

You would have only developed resistant mutations to the specific protease inhibitor you were on. These vary and probably disappear in time. The wild-type virus re-asserts itself as the dominant strain and with Victrelis and Incivek, it is estimated that most RAV's are gone after 2 years.

The anaemia on treatment is mostly due to haemolysis from Ribavirin. Interferon plays a small part, depressing the bone marrow. In time, Riba. may be dropped from treatment protocols, but at the moment, Geno 1a's are thought to have a better SVR chance by using it as a backup.

I'm impressed by your running. Like you, I had compensated cirrhosis with no symptoms. I've taken up cycling since my SVR, and play golf 3 times a week. Running would not be good for my old back and knees. Good luck, and keep us posted. Cheers.

P.S. I deleted your duplicate post in 'On Treatment'.

-- Edited by mallani on Friday 31st of January 2014 11:45:37 PM

Dario · Newbie

Hi All,

I have G1a, prior non responder (to a very early protease inhibitor trial about 5 and half years ago), am now resistant to protease inhibitors, compensated cirrhosis, live in the UK. had HCV since the late 70's.

I'm awaiting confirmation for a place on a Gilead trial, sofusbuvir, ledipasvir and ribavirin. If I get in the trial should be starting around Easter. I'm very excited about the possibility of getting rid of the virus, especially as I have few symptoms despite the cirrhosis - and I'd like to keep it that way.

I may be unusual for someone with HCV in that I run a lot, competitively. I'm not not quite national standard for my age, 50 plus, but I am regional standard. I wondered if anyone else runs with HCV, or knows someone who does? I used to get wiped out by even short races, like 5km, but I slowly built up my strength and I've now done about a dozen half marathons and felt fine. I'm also vegan because I think it's a diet that is very gentle on the liver, though it is challenging as a runner.

I'm curious to know what side effects people have experienced with ribavirin - without the dreaded interferon. The trial I had 5 years ago had both and I got bad anaemia, I'm hoping that was mostly the interferon.

That's enough for an introduction but if you're interested in taking up running I'd be more than happy to help. Great to find this resource and looking forward to hearing from others.

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