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Hep C Discussion Forum -> General Discussion -> Fatigue Question
Post Info TOPIC: Fatigue Question
goggsmackay


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RE: Fatigue Question
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I am week 47 of 48 of peginterferon/ribavirin and although I have suffered lack of energy, it really has been the low haemoglobing (red blood cells) levels that were a killer. From being able to run 10k I quickly got out of breath going up 2 flights of stairs.

But I was determined to not give in. I'm not saying that I've continued to do the same things cos that is just not possible but I will make decisions such as walking into town (2 miles) rather than getting the bus. I am positive that although my energy levels are really low, I think recovery will be quicker as I have tried to maintain some level of physical activity.

Word of warning: don't volunteer to install light bulbs for aunt or clean black mold from friends rented-out house! Woha! You know when your arms get sore when painting walls above head height? - well multiply that by a thousand and that's what it's like right now! You gotta laugh tho.

I can't believe I just found this forum and I only have one week of treatment left....! It's really nice to come here and read what other people think and are going through and just to know that all those niggling little questions such as: 'is it only me feeling rough and am I a major wimp?' are occurring with most people on treatment.

This forum is really great and full marks to whoever started it, they have really made something positive. I shall recommend the forum to other people doing treatment.

Gordon

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Derekrex


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I'm a 24 year old, just finished treatment 2 months ago. But I am the same way. I need, and have needed for the last few years to take naps halfway through the day, got tons of brain fog, and got sick 3-4 times a year. I'm not to the point where I'm feeling great again after treatment. I'm still fatigued from all the treatment But I am hoping all of those symptoms were from the Hep C. And it is the only thing that would make sense at my age and physical fitness.

If you think about it. Your body is at war with itself. always fighting a virus and weirdly enough it's creating it too. It only makes sense that your body would get tired.

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jwmaher


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Hey bc1949

Fasten your seat belt it's a rough ride.  I come off the victrellis Aug. 10th and come off everything Nov. 2nd (48 weeks)  Once you hear the words undetecable you have to keep going.  I want to know what it is to feel like myself again.  Best of luck and keep checking in.  It really and truly helps.  

Mike



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jwmaher


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What a hopeful reminder; particularly to those who have been doing this for 48weeks.  For me, it knocked me to the ground.  It's messages like yours that help us pick outselves and kep our eyes on the prize.

Lots of luck and by the way how are you doing?

Mike



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Sunrise747


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Bob...And congratulations to you for finally taking the plunge and starting treatment!  We all know what a big step and decision that is.   Good luck with it.  Tons of support here if you need it.



__________________

Geno 1B Relapser 2001. Started Incivek 12-16-11. 57 yr old male.  Last biopsy 2000 -stage 3 fibrosis. UND Wk4, 12, 18, 26.  Did 34 weeks.  Still UND at 12-wks post.
Scout


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Fatigue was a huge part of my life before treatment. I'm a climber and I always though I was a genetic whimp due to my inability to do the real hard climbs and recoup quickly. Once I was diagnoised it all made sense. I'm 19 weeks into treatment and REALLY fatigued right now. But I've got new hope for the future and know I'll feel better and have more energy once I'm done. Keep on moving in the SVR direction is my motto right now. 5 weeks to go.



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Geno 1a, Viral load at 2 4, 8, 12 and 16  weeks, UND, Triple therapy Incevek done,   Peg & Riba Done, UND and making plans for the future!!
bc61949


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  hey Lon. as a Teamster I did some heavy labor in my life but I also worked out with weights. My strength and endurance was considerably better than my fellow employees. Yes I (had) some vanity, but it was fun staying at the top of my game. Was diagnosed in 1995 but was still a dynamo Dudley. In 2001 my  wife convinced me to do tx---quit after 3 wks----to brutal. Went back to feeling strong like my regular self but at 57 I felt exactly like you do now. Dazed and confused about my condition.  I had cut back on the weight lifting and continued to work but still the 2 hr naps and fatigue. I retired in 2010 at 61 because I cant do it.  I was tired of being angry, from being fatigued so easily and losing the drive.  I do not know how much is age, hep c or other but next week I start trple tx just so I can cross hepc off the list.  Bob  ps.  I ran with a hard and fast crowd so some say its just that i used it all up, maybe so

 



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Sunrise747


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I'm 57 and have had hep c for 35 years.  No symptoms and lead a very active life.  Probably at or close to cirrhosis but my tests are all normal.  However every once in a while (1 or 2x yearly I will just totally crash as if my body were lead.  Conk right out.  Not sure if that has anything to do with my liver or not.  One of the problems with having a virus like hep c is that you are never sure if its old age or the disease!  Of course "Normal"  people get weird stuff too.



__________________

Geno 1B Relapser 2001. Started Incivek 12-16-11. 57 yr old male.  Last biopsy 2000 -stage 3 fibrosis. UND Wk4, 12, 18, 26.  Did 34 weeks.  Still UND at 12-wks post.
wnose


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3 months before treatment, I recall going for a run in the morning at 7 am. I ran about 3 km, then came back, showered and dressed for work. That run basically wiped me out for the whole day - I had never felt that exhausted in my whole life. And I used to run regularly (up to 15km)  back when I was 20.

After that run, I never ran again until post treatment. 

Even without exercise, I would routinely feel exhausted by 3 pm everyday. I found that anti-oxidants and maca helped me regain some energy though. 



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Diagnosed Geno 1a, 1992. Relapsed after riba-peg trmt in Aug 08. Oct 22 2011: Incivek 3rx @ 18 million VL.

Day 10: <15. --------------------->>>>>>12 OCT 2012: SVR!!! 
Lon


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biggrin Thx!



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(Geno type 1, VL 3 million, stage 2-3, took (8) weeks of Harvoni that completed on May 1, 2015, I'm showing undetectable today)

"Everyday is a gift, that's why they call it the present."
LUV2RYDE


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Hey Lon,

I just had my biopsy and was thinking after my doc's asst told me my results...I could wait...my doc says nope u r starting treatment. I am going on a clinical trial the end of July...I will find out what trial it is. But my whole point to my post is now I am fully clear about just how healthy my liver is. The biopsy was a piece of cake and I was back on my motorcycle 2 days after the fact. Just think about getting one and if your doc wants to do one it might be a good idea Oh and by the way my numbers were 2/1 which I thought were pretty good. Just trying to help ya.

 



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Geno type 1A Started Abbott clinical trial mid Jan 2013. :-)

Viral load when I started this trial 4.75million  Went 12wks on placebo and started real meds on 4/5/13 after 1wk  on real meds 25 after UND @3wks,6wks.w00t: Done trial 6/27/13 and still UND.

 
greenqueen


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Hi Lon,

It was constant fatigue combined with catching lots of infections that eventually resulted in my diagnosis. As Jill says, there are people with Hep C who are asymptomatic, but for those that aren't, chronic fatigue is one of the most common symptoms. Your Gastro doesn't sound very up to date on Hep C to make comments like that!

Jill's link has good info and I expect many people here would say that fatigue was a prominent symptom.

Dr Simon Taylor-Robinson did a presentation called "The Impact of Hepatitis C on the whole body", which is really interesting. Here's the link.

http://hepcfriends.activeboard.com/t38755598/the-impact-of-hepatitis-c-on-the-whole-bodysimon-taylor-robi/

Steff xx

 

 



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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
Cinnamon Girl


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Lon wrote:
I can't seem to make it through the day without a 2 hour afternoon nap.  My body begins to feel like lead and my mind gets fuzzy and I get cranky around noon.  As soon as I have the afternoon nap, I'm good to go again.  

I've discussed this with my gastroenternologist and he says that there is no supporting evidence that Hep C causes fatigue.  Yet, I'm reading people taking the treatment and they are saying how their energy levels come up as soon as their viral load comes down.


 Hi Lon, it`s true that many people with Hep C are asymptomatic, and so when they get the dx it`s often a big shock, but others do experience various health problems, including fatigue and "brain fog".   Some people here on the forum have reported having "a new lease of life" after they`ve successfully cleared the virus, even when they hadn`t realised the virus was causing them any problems.

Personally speaking, I`ve suffered from CFS (Chronic Fatigue Syndrome) for many years and no doctor I`ve ever spoken to has been able to tell me whether or not it was related to Hep C, which I`d had since the `70`s.   But since I finished my tx last year the fatigue, brain fog and other assorted aches and pains are definitely better than they were .   I haven`t made a complete recovery, I still appear to have CFS and go through occasional rough patches, but the  improvement in my health overall is significant and it`s certainly made a difference to my quality of life.

Here`s a link you might find useful -

http://www.hepctrust.org.uk/Hepatitis_C_Info/Stages+of+Hepatitis+C/Symptoms

Best of luck! ~ Jill xx

 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
hrsetrdr


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Lon wrote:

Hello,

I have Genotype 1, 3 Million VL.  I'm holding off on treatment until next year with hopes of 7977 becoming available.  I'm 59 and work out at the gym 4x a week, takes vitamins, eat healthy and get 8 hours sleep a night.  

I can't seem to make it through the day without a 2 hour afternoon nap.  My body begins to feel like lead and my mind gets fuzzy and I get cranky around noon.  As soon as I have the afternoon nap, I'm good to go again.  

I've discussed this with my gastroenternologist and he says that there is no supporting evidence that Hep C causes fatigue.  Yet, I'm reading people taking the treatment and they are saying how their energy levels come up as soon as their viral load comes down.

If anyone has any thoughts on this or experiences the fatigue that I'm discribing, I would enjoy hearing your thought.

Thank you.

Lon

 Lon,

If it were not for the hep C diagnosis, I'd swear you were just a normal 59 yr. old guy, that's otherwise doing quite better than average young men your age.  

-I have read that some patients experiance fatique while in the initial acute phase of Hep C infection; many never have any kind of symptoms.

During the mid 1990s I was experiencing frequent fatique, would hit the couch in the living room as soon as I come through the front door. I would just sit there for a couple hours before even changing clothes or getting a beer.    At the time I thought that I may be having a carbon monoxide problem with the old old wall heaters in the house, they checked O.K., and the CO detector never went off.  gen068.gif



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
Lon


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Hello,

I see my doctor next week.  He wanted to do a biopsy to see if it was safe for me to wait for 7977 but I would prefer not to the biopsy and just wait until 7977 becomes available next year.  There are people on this forum that in the clinical trials now that feel the end of next year is a possible target date for 7977.  

My liver profiles are good and I'm not showing any signs liver failure so I think it's safe to wait a little longer.  I will probably have the biospy next year once 7977 us almost ready to be released.  

Best Regards,

Lon



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(Geno type 1, VL 3 million, stage 2-3, took (8) weeks of Harvoni that completed on May 1, 2015, I'm showing undetectable today)

"Everyday is a gift, that's why they call it the present."
Lon


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Thank you.



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(Geno type 1, VL 3 million, stage 2-3, took (8) weeks of Harvoni that completed on May 1, 2015, I'm showing undetectable today)

"Everyday is a gift, that's why they call it the present."
kiwi


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generally the energy levels are low low low on treatment, due to the drugs... low heamoglobin and the like.

my viral load went from 17million to 1300 in a couple of months, but my fatigue went up and energy went way down...

just go with it. if you need a nap, take one.. thats one thing ive learnt on treatment. listen to my body...

good luck



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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
Lon


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Hello,

I have Genotype 1, 3 Million VL.  I'm holding off on treatment until next year with hopes of 7977 becoming available.  I'm 59 and work out at the gym 4x a week, takes vitamins, eat healthy and get 8 hours sleep a night.  

I can't seem to make it through the day without a 2 hour afternoon nap.  My body begins to feel like lead and my mind gets fuzzy and I get cranky around noon.  As soon as I have the afternoon nap, I'm good to go again.  

I've discussed this with my gastroenternologist and he says that there is no supporting evidence that Hep C causes fatigue.  Yet, I'm reading people taking the treatment and they are saying how their energy levels come up as soon as their viral load comes down.

If anyone has any thoughts on this or experiences the fatigue that I'm discribing, I would enjoy hearing your thought.

Thank you.

Lon



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(Geno type 1, VL 3 million, stage 2-3, took (8) weeks of Harvoni that completed on May 1, 2015, I'm showing undetectable today)

"Everyday is a gift, that's why they call it the present."
Caryn


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Hi Lon,

I get pretty tired too. On my days off, if I take a short nap it helps. I seem to always be running around on those days, so I don't get the nap as much as I'd like. I really start dragging around 3 or so. I kind of feel like I only slept for a few hours when I actually slept at least 8. Are there any other symptoms that you may have as a result of Hep C? I would be curious to know if some of the symptoms I have are related to the hep c or just something else. 

You are right at about the same stage of liver disease as I am. What does your doctor say about waiting for the 7977?  Has your doctor given you a time frame as to if 7977 does not come available that you will have to start treatment anyway?  I am curious because my date to start treatment is fast approaching. 



-- Edited by Caryn on Sunday 1st of July 2012 04:17:52 AM

__________________

1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
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