fatigue

[nikkihorseluvr]

I am just about to take shot #3, and for the last few weeks have had the flu like symptoms.  The fatigue is making doing anything impossible.  I have not left the house.  I hav e trouble walking upstairs, heart pounding and heavy breathing.  Had a blood test and the MA told me that all was OK there.  Suggestions?

[Drarig]

I never thought I would be able to get help with copays.  Thx for sharing the Commit to Care # with me -- I am going to contact them tomorrow -- thx again for your assistance - you guys are great!

[nikkihorseluvr]

Thank you all!  I have contacted everyone!!!!!  My husband's retirement and savings are too high, and I will not ask him to ruin his life savings.  I will just do it myself.  I thank you for all of the kind remarks.

[Dale_Ray]

Nikki:
Fatigue and sides were terrible the first few weeks and then became better. It seems to cycle up and down. I'm on week 29 now and I just push myself to go to work everyday and I try each evening to do some little thing to make my mind and body work. My wife has no problem helping me keep a list going-ha! I think it is good advice to push yourself physically and on the days that you can't don't let it worry you. Dale

[Bill1954]

For financial assistance with  Pegasys/Copegus, try Roche

[nikkihorseluvr]

Committment to Care does not help with pegysys or copegus.

[Rogirl]

I get encouraged when I see the determination so many of you have regarding tx and trying to still live a "normal" life.  I will start tx in a couple of weeks--will attend a class next week regarding the process and then will begin.
I have been plagued with extreme fatigue for the last several months--and the fatigue with tx is the thing I fear the most.  But when I read your posts and see how so many of you dig in and keep going--well, I get inspired and think if you can do it so can I.  I'm also keeping an open mind though--kinda like I did 24 years ago when I had my son--I wanted to have a "natural" delivery--but kept the door open in case I needed something--and for some reason I didn't.  So I will hope and pray for the best but also recognize what happens--happens--and I'll go from there.
Thanks everyone for your honesty!

[Drarig]

Hey, Strator -- thx for tips.  I do have asthma & have some heart issues like arrythmia & mvp, so I know what you mean about the breathing & pounding heart. I try to do what I can & always watch my bloodlevels for anemia, etc.  That is great you are at Week 37 - you must be getting pumped to get off this stuff soon! Are you're staying down? YOu said you're Dad's a bull, but you sound like one as well -- sound like you have a lot of strength to keep pushing with all you do -- mental strength as well.  It is good you spent the day watching those old movies w/your Dad --I'm sure it meant alot to him.  Best of luck with everything.

[lilmoma]

I think that is fantastic that you feel so great, and are able to continue with a semi-normal life!!!
I just did shot 15 last thursday, and it has only been the last 2 weeks that I was able to get back to my work-outs. I have worked out with weights for prolly the better part of 15 years. by week 2, everything came to a halt, and continued down hill. I am very happy to beable to get my weights out and sweat it up, I feel so strong again,....whoooo hooooo!!!
lilmoma

[sindog]

Depends on your geno type and many other factors. What is your geno type, your beginning viral load, biopsy results?

[Drarig]

That is great that you run and exercise...  I would think it would be fine as long as you feel able to. Def have to talk to your Doc about it.   I was worried I wouldn't be able to teach classes once I started treatment, but my doc said I could exercise at my current level as long as I felt able to and as long as my bloodlevels stayed ok.  (My wbc low, but everything else ok, so far).  I really feel guilty that I feel as good as I do, and that I can exercise as much, after reading what some of the others are going thru.  But as long as you can exercise, do it -- it really helps me stay energized and focused.  (I'm not on any anti-depressants or anything like that -- I haven't needed to yet, but I take it one day at a time).  When are you starting treatment?  I wish I didn't wait so long -- I found out 3 yrs ago & was afraid to start treatment after reading about all the side fx...

[jmjm530]

The timing (week 3) combined with your symptons, suggests the possiblity of ribavirin-induced anemia. Unfortunatly, a lot of doctors don't consider this a problem until your hemoglobin (hgb) drops below 10. However, many doctors experienced in treating hep c , treat anemia before the hgb gets that low. It's also not just the absolute number of your hgb. If your hgb has dropped more than a couple of points in the 3 weeks since you started treating, that also could account for your symptons, regardless of the number.

So again, if you've hgb has dropped more than two points since you started treating, ask your doctor about the rescue drug Procrit (epo). At least get them started on the paperwork for the insurance company, and insist on weekly blood counts until things are resolved. If your unsatisfied with how your medical team responds to the situation, get another opinion, preferably from a liver specialist (hepatologist) who treats large numbers of hep c patients.

Untreated anemia not only can compromise your health and ability to function, but it can also compromise your treatment if they have to end up reducing your ribavirin, especially during the first 12 weeks of treatment. Procrit intervention makes ribavirin dose reduction must less likely and therefore is associated with better treatment outcomes. Some recent studies back this up.

All the best luck.

-- Jim

[ohgreat]

I am getting my BX next week.  If my liver is bad I will probably treat soon.  If my liver is good then I will probably treat soon because my doctor says I am at an age where it is good to treat.  Plus I am 3a which means I have a slightly increased chance of clearing it or something like that.  But it seems like a lot of 3a's relapse.  Either way, I am sort of eager to get going on tx.

[Drarig]

Genotype 1, think viral load was extremely high -- 6 million -- can that be right?  Pls. excuse my ignorance -- I'm not as educated as the rest of you are about this.  My doc said my response to treatment was amazing...  my biopsy results were Stage 2 - my doc said some scarring but no cirrhosis -- (had a terrible experience w/biopsy - they hit that nerve that causes you to feel like your taking heart attack -- they also thought they punctured my lung cuz I couldn't breathe -- bad experience, but ok results...

[sindog]

ogreat, good advice, try to stay at your current level of excercise.
drarig, don't feel guilty. Give yourself credit for enduring.

To others that are sick, don't feel guilty either. Taking these meds can affect different people in different ways. They can deplete the chemicals in your body. For example, ribaviran and interferon slowly depletes your saratonin (?spelling). That's the I'm happy hormone.

[Drarig]

Sindog -- thx for the encouragement -- it helps.  Signing off -- hope both of you have a great day...

[nikkihorseluvr]

Thank you all.  My insurance does not pay for the treatment, and the doctor is not easy to reach.  So far, I have spoken with the MA, and I have doubts about her intelligence.  I am in a relatively small town, so changing docs is not an option.  I have learned more ab out the disease here than the medical model has shared with me.  Thanks a bunch!

[doglover28]

Horselvr,

In a few down Kalio gave someone this info "please contact Commitment to Care at 800 521 7157 The have a simple application process and they will supply your drugs for free, delivered to your door. Their application standards are liberal, you can earn over 50,000 and more a year and qualify in my state."  If you don't have coverage for treatment and want to treat, it would be worth contacting them.  

Drarig,
How long do you think you have had Hep?  I am a 1A also.  Just diagnosed. 42y female. No symptoms, just had slightly elevated enzymes during routine exam.  Haven't had biospy yet. Just Ulrasound. I go back to the specialist in late June.  I would like to wait and treat at the end of the summer. I've probably had it for over 20 years.  I exercise a lot.  Mainly mountain bike riding, and reading your post gave me some hope that I may be able to continue to exercise a bit when I treat. I guess I'll have to wait and see. It seems to affect everyone in different ways.

[Drarig]

My levels were almost undetectable at week 4 or 8(?), now just had my 12 week bloodwork on friday, but didn't get results yet.  Will find out Tues - keeping my fingers crossed...  is it true that if your levels are undetectable for 6 months straight, they consider stopping tx earlier?  I hate to be on this longer than I have to (I'm 45), but I don't want to stop treatment prematurely if there's any chance I could get relapse easier

[Drarig]

I'm not sure how long I've had it -- not sure how I got it...  did some snorting back in the late 70's (unfortunately 75% of the people in my town did) but no iv drugs -- then also helped a lady in a bad car accident in early 80's -- cut my finger on glass in her forehead.  Not sure if it was that or not, but if it was one of the two, then I've had it at least 25 years.  My doc said it doesn't matter how, just have to get better.  I found out about this 3 yrs ago in the weirdest way -- had to do CPR on guy who took massive heart attack & everything in his stomach came up into my mouth as I was doing rescue breathing.. it was hard but I kept going knowing I had to try & save his life.  Went for bloodwork just as a precaution and that's when my MD told me they found hep -- you can't even imagine how shocked I was! I cried for long time, got angry, was confused -- the "why me" thing.  Then I told myself I'm strong & I can get thru this.  I just hope I can clear it of my body and not have the constant worry about my health and the "solitude" this sickness creates in your mind.  I really didn't think I would be able to work, let alone stay as active as I am.  Just wish I started tx sooner.

[nikkihorseluvr]

Thanks for the advise, but I do not qualify for help.  I have insurance, but they deny all injectibles.  My husband has a nice nest egg, but I would never ask him for help as we have only been married for a year.  This would ruin him.  I just hope that I can adjust to the meds, and pay the bills!!!!!

[Drarig]

My insurance pays, but I still have a high copay for injectibles.  The Ribasphere only costs $10.00/month, but between the Peg and Nupogen, it's over $700.00 -- like having another small mortgage on top of all the other bills... cutting back on everything to afford my meds.  I shouldn't complain because I know there are alot of people out there without insurance & I can't imagine going thru this treatment or having this illness without insurance.

[Drarig]

whooo hooo back at ya!  That's excellent that you are doing strength training with weights -- I bet you were so happy to be able to start up again!  You will only get stronger from it.  I just did shot 13, so I hope I can hold out & continue on like I am - still have 35 weeks to go.  Some days I don't have energy to go, but because it's my job (2nd job), it's mandatory I be there.  Then I feel better afterwards.  All in all, I feel pretty normal, except my lower back probs did get worse along with my bronchial asthma.  Today, I am dying with the humidity.  But I keep telling myself it's better to have these issues now while on treatment,because the alternative of not trying tx could be worse.
ps -- Don't forget to pound that water down when you're working out!

[strator]

draig - sindog and others said it great about trying to stay as active as possible. Considering pounding heart and heavy breathing, be careful of the anemia. With anemia or any individual case things are always different. My hglb hasn't gone below 10.9 and was up a mo ago to 11.4 so I'm one of the more fortunate ones still able to do physical labor all week and keep a pretty full schedule without rescue drugs. But I truly believe part of that is because I've been dealing with heavy fatigue since before I was diagnosed with hep. I pushed myself through back then because i thought it was just from a few decades of party burnout, but I had to put food on the table. It was one of the overiding factors in why I decide to treat. My life was beginning to pass me by cause I was too tired. I'd given away most of my life to bad choices, now having it back I want to participate with energy.
When I get up hurting and drained(evryday) on tx, it's not something I haven't been through before. I learned to plan 20-60 min naps into the day rather than lay down everytime the fatigue hit. I have found that if I keep myself moving through the first 2 hrs, by the time I get to the job I've worked some kinks out. The hours I am working physically at work or around here are my best of the day. I truly believe the exercise provides stimulation that makes me feel physically & mentally better, and more productive. This may be one reason I have had what I consider ittle issue with depression. This weekend was shot #37 for me, and one of the worst physically since I started tx(probably related to an alien growth on my neck),yet being too run down to get all the yardwork I planned I was starting to get me very bummed and overwhelmed. I had done necessary stuff like change tires because I had to. Finally this afternoon I just went outside did some raking and mowed the yard(on my tractor), I was actually smiling when I came back in. One hr of work, helped for hrs.
At some points you know the aches are gonna be there anyways, whether you're on the couch or doing something physical. Do what you can handle, start small, if you start to feel better add more.
Oh great- The running may be feasible on tx(I had hoped too), but for me even though I do a lot of physical stuff and can crawl across a 50' attic a few times a day, continuous cardio stuff like running or skipping rope is more pushing than I can do. Possibly if it's broken up into smaller units. Be prepared to change the way you workout, if necessary.
Peace and Energy gang,
Don

[strator]

Sorry that last post was to nikkihorseluv.