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Avatar universal

Any athletes out there?

Hi,

I am a 48 year old amateur competitive cyclist and former Ironman athlete. I have had Hep c Gen 3 for last 30 years and to be honest couldn't say to what extent I have been affected. I am being pushed now to consider interferon/ribavirin treatment -not because my condition has deteriorated,rather 'well,why wouldn't you?'

I am not sure what to do but one big issue for me is the whole question of training and competing. My life pretty much revolves around my training(every day,sometimes wife a day) and racing during the season. I enjoy it,gives me a focus and helps deal with....stuff. Anyhow my worry is how I will manage during treatment,and the extent to which the gains it has taken me years to achieve will be lost.

Anyone out there? Help?

Rob
24 Responses
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Avatar universal
I am 55 and have had Hep-C for probably 30 years.  Never had any issues health related, just showed up one time in a blood test for insurance.  I treated in 2006 and was a partial responder and now treating with triple tx and incivek.  I monitored lab work and had three biopsys.  The doctor was very supportive and analytical about treatment options.  Based on the perceived slow damage of hep c for me, it may never have been an issue; but then it could have; so why take a chance.

I am a distance runner and competitive water skier; I live on a man made tournament water ski lake.  This will be a lost competitive year, but hopefully I have added many more to the back end.

Treatment is a choice and one you have to make based on all the liver factors.  I choose the treatment because I was healthy and hopefully able to manage the side effects better; it was also something continually in the back of my mind - if there are treatments out there that will cure this virus, why wouldn't you do it.

You do have to set aside the time for it and don't be surprised.  I cannot even run a mile now; you have to prepare your personal and professional live as it will probably be disrupted.  

You will find a wealth of information on this forum and many people with varying degrees of sx and treatment successes.  

You sound very healthy and it will have an impact, but so will advanced liver problems.

Get the facts from your doctor and it will help make the determinations a little more clear.

Best of luck to you.
Helpful - 0
Avatar universal
Any athletes out there?
-----------------------------
We got everything here ..athletes ,business people,males ,females young ,not so young (me) :), factory workers,housewives and yes cyclists.

Ironmen? Not sure ....

However I believe it it less relevant what we do and what our various hobbies are than the fact we are all striving to rid ourselves ,or planning to rid ourselves of the potential deadly disease of HCV.

You say you have had HCV for 30 years ..do you know how damaged your liver is by biopsy ?

Geno type three has an approx. cure rate of 75% with the combination drug treatment of Peg-Inteferon /Ribaviran and usually undertaken for 24 weeks.
Have you been referred to a specialist to discuss possible treatment and what it entails.

Whether or not you can pursue your line of work or hobbies at the same level you are now is unknown (everyone is different), strenuous physical activity is often curtailed when undergoing therapy,,however most activity of any kind is curtailed if your liver happens to fail....

Welcome to the group..
Will
Helpful - 0
179856 tn?1333547362
If you haven't had a biopsy then you dont know how much you have deteriorated.  Extreme physical sports can raise your liver enzymes on it's own, not even needing the HCV.  Many of us had no signs nor symptoms and thought we were pefectly healthy but had late stage liver disease.

I would advise you to get that done immediately.

As for Ironman, I dont know how feasible it would be by the end of treatment but if your liver is failing...you dont have much choice as will points out, you wont be doing much of anything by then.



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Avatar universal
Thanks for feedback,trying to get my head around it and steel myself for whatever comes
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Avatar universal
btw did have a biopsy long time ago at which stage no damage;another 12 years ago when it was 'stage1'. I did ask for one recently but was stonewalled which I don't understand. Am due bloods back next week and will enquire about that again.

Had been working on the basis that if it's ok,why do it. As I say,facing up to it now for 1st time but very anxious. Ho hum.

Thank you all.
Helpful - 0
2135877 tn?1381861126
I'm 38 years old.  I used to run between 4 - 8 miles a day, 7 - 8 minute pace.

Now, I'm four weeks into therapy.

It just depends on the day.  Some days I feel like I can run for three miles.  I did that yesterday.  Friday, I wanted to run for four miles, but ran out of energy after one mile.  I did walk the other three.  On Saturday, the day after my fourth shot, I could barely walk, but I managed to walk for two miles.

There is no way I would register for a race like this.  There is no way to compete.  If you do register, lower your expectations way down and be prepared to cancel at the last minute.  Never do anything with a team.
Helpful - 0
1669790 tn?1333662595
As mentioned above, your decision on when to treat should be based on the current condition of your liver.  If you put it off too long and become cirrhotic, your chances of a successful tx will go down and the symptoms will likely increase over time.  

Although I don't race, I do enjoy fast group rides.  As you know many of these group rides can be very challenging and depending on the group can push you beyond your limits.  I believe there are several other cyclists/runners/swimmers on the forum, but not sure of their level of competition.  

Like you, cycling is one of my great passions, usually riding 150+ miles/week.  When I found out that I had HCV while doing some bloodwork in prep for a surgery, I was in a bit of a shock.  It bothered me even more when I realized I'd likely have to put aside the cycling to undergo the lengthy tx.  It wasn't a difficult decision for me to tx since I didn't want the dark cloud of HCV over my head and wanted to clear the virus and get on with life.  

For the first 3-4 weeks of Inf/Riba I continued riding at my current level, but as the body becomes saturated with the meds, I first began to struggle with breathing.  It progressively got more challenging to the point where I could no longer keep up with the faster groups and longer length rides.  It got to the point where I was able to maintain about 17-18 mph and usually went about 25 miles on a Saturday and Sunday with the wife, then come home and crash on the couch.  It still felt great to spin, but there were no weekday rides and no pushing it for me.  

I just finished the 48 weeks of tx about 6 weeks ago and my lungs and legs are quickly coming back.  I'm still building back the base, but I still have some work to do to get back where I was.  If you only have to do 24 weeks of tx, chances are you may not lose too much muscle mass and won't have much work to do to get back to your current level.  If you're in great shape now, and continue at some level, you should come back quickly if all goes well.   However, I seriously doubt that you will be able to still function at the level to compete due to the reduction of hgb and other factors.  I may be wrong and it would be interesting to hear if anyone could still function at this high level while on tx.

I would just consider this a minor setback in your training, just as you would a knee injury or other physical ailment that required several months of healing.  You might lose 6 months of training, but you will likely get back to the same level with a few months after the end of treatment and hopefully SVR as well.  If you would like to discuss the details further, feel free to PM me since this post is already too long.    Good luck in your decision.  
Helpful - 0
766573 tn?1365166466
I agree deciding when to treat ought to be based on the condition of your liver however I also believe being in excellent physical condition has a lot to do with resilience as well as how one tolerates the meds. Once you have a biopsy you will be in a better position to decide what to do. There are less harsh (Interferon-free) meds in trials and if time is one your side you might have more options.

This may be a little overwhelming now but even if you cannot train quite at the level of performance you are accustomed to you will find ways to cross train. I know it's not just about maintaining peak training condition; a lot of it is about keeping your psychological needs met. Should you decide to treat it will just be one more challenge of the many you have accomplished.
Helpful - 0
Avatar universal
Thank you for your feedback,you are indeed correct,a big part of it is meeting psychological needs, goal setting,structure,sense of accomplishment and all that good stuff

Ah life!
Helpful - 0
Avatar universal
Think I managed to send you pm? In any event grateful for the feedback and taking the time out
Helpful - 0
Avatar universal
Thanks for feedback and best of luck to you with your treatment
Helpful - 0
Avatar universal
Thanks for feedback and best of luck to you with your treatment
Helpful - 0
1669790 tn?1333662595
Yes, got your pm, will reply later.
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1491755 tn?1333201362
I race road and mountain bikes did 24 weeks of treatment.  All I can tell you is somedays my body does not feel that great. I am 15 months post treatment, some mornings (most) I wake very stiff, and have frequent joint pain.  Other days I feel great, last summer I raced fairly well. Seems to be kind of random how well I feel.  Not complaining at all about treatment I had to do it as I was stage 3.  However if I faced the the situation with a liver that was stage 2 today, I would wait until GS-7977 is approved. The treatment is 12 weeks and far less difficult, with a higher success rate.

Just my opinion
Helpful - 0
2035311 tn?1332679977
Welcome Rob.

I have had hep c for over 35 yrs and have lived a "normal" life up until 2 years ago. I had a biopsy 10 years ago and it was Stage 2 Level 2.  My doctor said I could wait for a while because my chances at tx were not great being GT1a.  So I waited for a new tx to come out or until I started to feel the effects of the virus.

I had a knee injury when I was in my 20's and never was able to run more than twice a week. When I was 49 I started running and no knee problems.  Shortly after that I got in to triathlons.  I have since competed in over 100 triathlons and I also completed 5 IM's in the last 6 years.  We also do Ultra trail races and some crazy training workouts. I believe this has kept me and my liver as healthy as possible.  My doctor agrees.  

The last 2 years I started to feel more tired than usual and I met a new doctor last year who thought I would be a good candidate for Triple Tx.  I had taken a year off from Ironman so it seemed like a good time to try it.  It didn't work for me and now I am on a trail with 7977.  It's working great so far but I am on the ribavirin arm and this has made it very hard to work out.  I can only run a half mile at a time, then walk, then run again.  Maybe 3 times a week.  I swim a little but what I can do the best is bike.  I ride about 25-30 miles, twice a week when I can fit it in.  It's hard to get out there but once I do I always feel better.
I would get a biopsy for sure and try to wait for a 7977 combo if your numbers are the same as they were.  Good luck!
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Avatar universal
  Hi, Rob~  Have your enzymes been elevated, since your Hep C diangnosis?
I would just go ahead and insist on getting the biopsy, with your Gastro Doctor.
    I didn't find the Ribavirin/Interferon treatment to be that bad at all. I was still managing to play tennis, etc. But I am on the Triple Treatment, so after the easy 4 weeks of just the Riba and Interferon, they added a third chemical, which kinda wiped me out, cuz I'm GenoType 1a
    If your biopsy is Stage 2, I would go ahead and treat it, for the 6 months, you can time it to start as much off-season, as you can. You may get a little out of shape, but that will just give you more incentive to work out harder, once your done with treatment.
    I think Hep C Treatment goes easier, and is more effective, for those of us, that are already in shape, good luck
Helpful - 0
1148619 tn?1332010984
Wow, I was in your same situation a few years back. Not an IM person but a marathoner, Olympic Distance Tris and Mountain Biker. How can I give this up I would ask myself.  So, I put off tx for about 5 years then one day decided that was not a wise thing to do so I did a marathon, a tri, spent the summer as a mountain bike guide and then treated.  I was able to keep swimming the first month and running some but it all came to a halt at two months. I felt so crummy that going out and doing something was not an option nor did I even think about it.  I am now 5 weeks EOT and its all coming back.  I feel great and glad I have tx behind me. It was hard mentally thinking about if I should or should not tx. Now I don't have to think about it anymore.    Good luck with your decision, a bx helps with the decision.   I WAS   2/2.  Geno type 1a
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1654058 tn?1407159066
I was asymptomatic and ESLD. I kept working out at low weights and circuit training. No running, just power walking.
Over the first 38-43 weeks of treating I was still able to walk a few miles on weekends. I still gardened, but only strolled and worked in a large building with a few miles walked daily.
I would add to what others have said, that if your liver is in poor condition, watch for weight lifting due to varices. I'm working on no weights for a while. Can't even lift a textbook. BUT I'm UND.
Good luck, I agree that a strong core and cardiovascular sys can help during treatment.
Karen :)
Helpful - 0
2114467 tn?1358210256
Hi there, I'm early in treatment and swimming 5 days a week. I backed off my hour sessions to 40 mins so I wouldn't have any unfulfilled expectations. The swimming does keep me sane and my body always feels better afterwards. Must say though, the kickstart is sometimes a bit slow. Rhythmic breathing really helps. My muscles already feel a bit softer but I'm committed to ridding my body of the virus, NOW.
Best to ya,
C
Helpful - 0
Avatar universal
Thanks all,it's good to hear the different experiences.Seems that most people get whacked eventually with the cumulative effect of treatment.Started yesterday and do far it's all manageable,not much fun but manageable.

Going to keep going for as long as I can but clearly,need to be ready to accept when I can't any longer.Good to hear from all the other athletes out there and those that have got back to training and competing.

Thanks for taking the time to respone,please forgive my delay in reverting

Best wishes

Robert
Helpful - 0
Avatar universal
Update

10 weeks in and I'm just back from 4 1/2 hours on bike so happy with that. Definetly tougher and am not as strong as I was but pleased to be active.

Bloods are down (red cells 20%) white have crashed and am taking weekly shots of Neupogen(nasty) Platelets quite low too.

Got a rash which exacerbates the bad insomnia I have anyway but take sleeping tablets twice a week so I don't collapse altogether. Can get a bit cranky too.

Nuepogen is probably the worst as it leads to aches & pains.

By and large I am ok with some bad days but am pushing through. Have pushed too hard a couple of times and suffered. There is no doubt treatment has an effect. Part of me thought I'd be different and could just ignore it.

Not clear yet but fingers crossed.

Good luck to you all

R
Helpful - 0
163305 tn?1333668571
Great to hear you're still exercising. I believe it's important.

As for the neupogen, my doc reduced my dosage in half when I complained about the side effects. It seemed to work just as well at the lower dosage with less pain.
wbc drop is actually a good sign that the treatment is working.

Keep your eye on the finish line~
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1669790 tn?1333662595
Kudos for spending 4 hrs on the bike at 10 weeks.  Good to hear you're able to continue exercising.  If your doing this much now, I'd guess you'll be able to continue at a slower pace as long as you don't push too much.  Rather than riding 4-5 days per week, I'd ride 2-3 during tx.  I always felt better after a ride, both physically and emotionally.  Don't worry about losing too much during tx, since your legs and lungs will come back in a month or so after eot.  

Be careful with the heat and sweating too much, since this will really trigger the rash.  Take cool showers.  I agree on the neupogen.  It allowed me to avoid a dose reduction of Int, but I began to hate the stuff.    Good luck to you as you move forward.

Btw, just got back from a 70 mile ride to the Clearwater beach area.  Great ride today.  
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Avatar universal
thanks guys

Where I live I don't have to wory about the heat to much though I did go on a surf holiday recently and was miserable as heat made the rash unbearable.

Neupogen is nasty,there is a possibility they will reduce the dose next Fri depending on bloods,got to take a shot tomorrow night.

Even after my epic ride today it's 3 am and I'm wide awake

Fitcyclist,that sounds fantastic. I ompeted in the 70.3 IM World Championships in Clearwater some years back and loved it. Great place.

Best of luck guys
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