Tips for fatigue on treatment

I've posted a few times before.  I'm from Canada and was Dx in May of 2006.  On October 13th, I started an experimental treatment + ribavirin + pegasys.  I did the experimental treatment for 5 weeks, and a "rest period" of three weeks prior to starting the SOC of Riba & Pegasys for 48 weeks.  I'm a geno1.
I'm now at week 18.  (Week 13 of just Riba & Peg).

My labs have all been good, save for a severe drop in mid Feb of both my WBC & RBC counts, but all came back up within a few days.

My worst sx now seems to be fatigue (although they do change from week to week, the fatique is always there).  I work full time, and have three children.  I know that alot of people have continued to work full time.

Just wondering how everyone has dealt with the fatique.  Any tips that you would like to share?

Thanks!

[Lilla]

regarding fatigue -- I am plagued with extreme fatigue (I feel)  I am not used to all of a sudden running out of steam.   Thankfully I've been able to sleep well and feel pretty good in mornings, but come afternoon, I am wiped out.  I work out of my house so I'm fortunate that I can go and rest.  Lately, when I rest I am konked out for 1 to 2 hours.  I am battling aches, mainly  in my back and I am assuming this is related to tx.  I do know that my water consumption must be high or I feel worse. I sneak in one O'Doul's every once in awhile to break up boredom (doctor said OK on O'Douls).  Each day seems to be different.  One week the fatigue was worse 3 or 4 days after shot, and the next week it was worse 24 hours after.

[wyntre9]

". . . come afternoon, I am wiped out. I work out of my house so I'm fortunate that I can go and rest. Lately, when I rest I am konked out for 1 to 2 hours."

Ya know, that's what's gping on with me, too.  I'm beginning to wonder if it's the AM Ribavarin.  (I take 600 in the morning and 400 at night).

I feel fine when I get up (usually) but I crash almost every afternoon between 12 and 4.  Then I perk up and feel almost normal for the rest of the evening.  After I take my nightly riba, I go to bed, so maybe that's why I'm only getting reactions with the AM dose.

I wonder of you can take all the riba in one dose, at night, or is it important to try and maintain certain levels in the bloodstream?

Does anyone have a different riba dosing schedule?

[zazza]

I take 400 mg ribavirin in the morning and 600 mg in the evening. I suffer from fatigue, which often is worst the first half of the day. Especially the first, second and sometimes even third day after the shot I will be terribly tired. I believe it to be very important not to take all the ribavirin in one dose.

[wyntre9]

That's the opposite of my schedule.

I'm wondering if you can take, say, 1 tab every 4 or 5 hours during the day and then 2 or 3 at night, coz the fatigue is killing me, too, and I'm beginning to suspect it's more from the riba than the peg.  I get practically the same sx every day, shot or no shot.  If I'm lucky, I might feel a little better Thursday and Friday, just in time for labs and the next shot.

What do you think about the riba?  

Does anyone else have any advice?

[web52]

my fatigue is much worse in the mornings. seems to improve in the mid afternoon into the evening. i take 1200 mg riba (600 in morning, 600 before bed). i cant tell what causes the fatigue, if its the ifn or the riba. i suspect the ifn more. the sx from these drugs are so unpredictable & variable that ive given up trying to figure it all out. just trying to go w/ the flow for the next 18 weeks & 3 days (not that im counting) :)

[honey11]

Day,,,,that is a wonderful question but while on tx,,,I honestly don't think there is anyway around the fatigue! Some days though,,,it is worse then others and the days that you have energy,,,,you take full advantage and catch up plus so the days that are bad,,,you can relax and lay on couch lol  Thats my tip! ha  I know,,,,,not the answer you were looking for but I did find during my tx,,,,keep busy and time flies and if you are tired,,,try not to dwell and tomorrow is new day!  I hope your tx finishes quick and your energy return!! Best Wishes!

[wyntre9]

DL - I can't imagine tx with 3 kids!

Web,
"my fatigue is much worse in the mornings. seems to improve in the mid afternoon into the evening."

So we have opposite reactions.  LOL

Hey, only 129 days, 3,096 hours, 185,760 more minutes to go.  :)

honey11
"I honestly don't think there is anyway around the fatigue! Some days though,,,it is worse then others and the days that you have energy,,,,you take full advantage and catch up"

Yeah, I'm sad to say I think you're right.  

[rosebud57]

Hi,

i had thought that i had seen a post about ritalin on tx. maybe an old timer would know about that. a quick search found somthing but it did not seem to be useful info.

seems like fatigue is something we just have to deal with. sounds like you have a lot going on with 3 young children. caring for young children even when healthy is a challenge I can imagine the difficulty while undergoing tx.

try to plan simple daily activity and meals with quiet time breaks so you can rest. daytime bath and story time help to settle for naps and regular schedule helps. see if family can help with them. not much you can do about the fatigue.

[snowbyrd]

Hi there from a fellow Canadian. I also have issues with being tired all the time. I sleep every afternoon for at least 2 to 3 hours and at least 8hours a night. I normally worked 40 hours a week with a hour commute. Not anymore. I look up to people who are able to work through tx. I don't know how you do it. Hang in there and try to be good to yourself.

[mauilady]

The fatigue thing was getting to be a real problem for me at week 5 of tx; then my doctor put me on Neupogen and oh, what a difference that made!  I have my life back again!  My WBCs were so low I had zero energy.  And it was starting to depress me.  I'm taking 1200 mg riba daily (2X).  I feel the worst the day after my shots, but the Neupogen kicks in the day after that.  

[DayLyn]

Thanks for all of the comments!  It's nice to know that other people understand me.  
My children are older - 15,14 & 11.  My family doesn't seem to understand why I'm so tired all the time - so no help there.

My specialist says that my Wbc count is fine, so nothing to do with that, I guess.

Another problem I'm having is a really "speedy" kind of feeling.  Like I have to get up and run, but am too tired to do a thing.  This happens every day in the early afternoon and lasts until I go to sleep at night.  It's driving me nuts.  My brain is exhausted, I'm exhausted, but my body wants to run...... frustrating.  It's almost like restless legs, but all over my body.

Anyone else have this "speedy" feeling?

[SJL]

Daylyn-I have done 2 rds. of therapy, plus maintainence, finishing in Aug. 06., still detectable.

I was extremely fatigued on therapy, but I hate to say, I am almost as fatigued now. Even Grocery shopping wipes me out!

I don't know how you have worked and maintained! You must be incredibly strong.
I now take Vitamin B12 injections at least twice a mth., but really don't see alot of difference.

Their are days that I feel better & those seem to be the days that get me in trouble, as I try to do too much to catch up. I am going to Shands Hospital in Gainesville along with my Hepatitus (hepatitis) Doctor in Lakeland, FL. At Shands they advised me to do one thing a day, (easy to say huh?)or it would take my body 2-3 days to catch up. Guess what, they are right!

Side affects left are Neuropathy in feet & legs, causing numbness most of the day. Fallen 14 times, luckily no broken anything. Cryoglobulin & a tumour marker, aches & pains constantly. 1B, grade 3, stage 4, with beginning cirrhosis, age 62, F. No more interferon for me.

As for the speedy feelings, are you taking an anti-depressant? My only energy comes late at night, which is hard for me to understand? When everyone is going to bed, I am just becoming fully a human being again. I take anti-depressants, 3x per day.

Rosebud-I tried Ritalin and it was like speed, I couldn't do it.

One day their will be answers for us all, and until then I thank God for everyday!

Wishing you stressless, pain free days,
Sandy

[nygirl7]

I was extremely hyper with my thyroid as well (which i'd guess is why they call it hyper LOL).  I haven't slept well until just this last week the Ambien worked as the riba is finally abating somewhat.

I did riba and peg for 72 weeks and although it killed my thyroid good (i am now hypo which often happens to us with thyroid problems from interferon I am told) but still not sleeping until this riba is wearing down.

So which is it? I don't know but it SEEMS (not sure yet) that someday soon I can go off the Ambien I hope - wean down.

Treatment just sucks anyway you look at it when you have the problems.  Being SO letharic but not being able to sleep is hell - but if it's killing the virus...I figured I could deal with it.

[rosebud57]

yes, i have the speedy feeling.it occured mostly at night when i would try to sleep. nothing would help me sleep. (haven't tried ambien) but i have not experienced this in the last few days, what happened is i thought and maybe stil do thought it was the meds. don't know which, but recently was told thyroid was low, was already on levothyroid, anyway they doubled the thyroid med, and i don't feel so racey now. dr. treating me for thyroid said the sleepless not from meds, from thyroid. at least that is what i thought to understand what he was telling me. telling you i question every thought i have these days.

i understand what you mean about familly not understanding things like "limitations" due to treatment. i once did so much and now can do very little.

[rosebud57]

yeah tx hard. i usually walk around like walking dead, a lot better since thyroid meds adjusted. i don't even have trouble sleeping 3 nights in a row. they bumped up levothyroid med and gave me restoril. heavy sleep its nice, but found i don't need it every night feel so nicely tired around 10p (early for me i'm a night owl)

today my best day yet in a long time. woke up energy busting out everywhere (beautiful spring day too), its late afternoon and i am wiped out. still have lot's of writing to do. need a nap. week 15 tx tonight. i keep moving date back one day, did 3x mean to keep to thursday now don't want to keep messing with it, almost would be better if i could hold back a day and try to write somemore tomorrow. prob take the shot anyway.