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?

[sindog]

Happy Memorial Day,
I am on shot #20 or 30 something. Fatique is a problem. The first three shots were the worst for me. Out of breath is from your red blood count going down. Interferon make you anemic. If your blood work is ok, then you probably will adapt and get used to it.

As impossible as it sounds, you need to get up and move. Drink water, lots. I drink Propel by Gatoraid. Remember, even though you feel like you have the flu, you don't. Resting makes it worse. Take a shower. Get dressed. Take a walk. Move until you can no longer move. You have to work the meds through your system. Good luck, and hang in there. It will get better.

[Drarig]

Hi, Nikki, I just took shot 13 on Friday.  The first week or 2, I had flu-like symptoms (chills/achey) day after shot. Other than that, I've only had it occasionally.  Supposedly, I've heard the symptoms ease up after the first month or so, but after reading some of the postings, I don't think that's the case w/everyone...  these guys are all experts, so I'm sure they will give you better advice, but I know my symptoms were worse if I didn't drink alot of water and stay hydrated...  I really haven't done anything different (no diet changes or anything, other than adding ALOT of water to my diet, more than the normal 80 oz.  I am a fitness instructor so I had to go up to about 130 to 150 ozs. per day.  I hope that your side fx ease up and you'll soon be feeling better.  It's easier said then done, but at least you are not alone and we are all in this together!

[sindog]

Also, I have three horses. I guess I love them. Not always sure when they step on my foot, or worse, cr*ap on it.

[Drarig]

I agree w/you 100%!  I know alot of people can't exercise or move around on this treatment, but it helps me so much. I push myself to get to class.   I teach cardio kickbox, bootcamp and strengthening classes, and even though I might feel crappy before class, I feel like a new person afterwards - completely normal -- no fatigue, etc.  I also try to walk everyday at my full-time job, and I feel so much better afterwards.  I really feel bad that not everyone on tx has the ability or energy to do that.

[sindog]

I also work full time and walk daily at least a mile. Pretty much a roller coaster ride. Some days, like today, I am working hard to feel better. Other days, like yesterday, felt great. I've had my share of physical and mental crashes, also highs. Good news is, I've been clear since week 12 and am over half way done. How bout you?

[ohgreat]

I am 34 and I currently run about 4 miles 3x a week.  Would it be safe to do that if/when I start TX?

[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]

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

[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.

[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

[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.