Treatment week 11 - side effects

[lyrainoxford]

Am I normal??  I just began my 11th week of treatment - 2 more weeks of Incivek!  But I am finding that I seem to be more worn out as the weeks go on.  Is this normal?  I stay tired, I have difficulty getting motivated because I get so exhausted doing normal daily activities.  Is this all in my mind???  I work M-F and I haven't missed a day to side effects yet.  I have to push myself very hard just to make it to work and get through the day.  By the time work is over, I'm exhausted.  On the weekends, the week has worn me out so much that I can barely get out of my house.  I'm beginning to feel like this is all in my head and I'm feeling pretty worthless.  Someone please tell me if this is a normal response or if I'm truly going crazy.  I feel like I'm on the verge of a breakdown.

[lyrainoxford]

belle - you ARE a good bunch.  I appreciate you so, I can't tell you how much.  This forum came just when I needed it!  Good luck to you in your treatment!!

Bee - the movie let me down a little.  There was just too much to contain in a movie. And they haven't made the others.  I don't think they will.  the concept was not well-received.
I'm glad you met two goals today!  I don't know that I met any.  No - I unpacked the dishwasher!  It was looming over me for days lol.  So glad to have gotten that out of the way!
Here's to accomplishing all that we can tomorrow as well!

Libzo - "You are normal, unfortunately".  That's funny.  Funny because it's true, I suppose.  Are you through with treatment now?  If so, I hope that things are going well for you!  
And thank you for your sweet words!  Everyone here is so kind and are my own personal heroes!  I think it takes strong people to go through this and I believe that we are ALL so strong!

[libzo2]

Another inspiring thread for the many silent witnesses.  You all warriors are the best.  I am done with tx but my experience with my fellow heppers was as theraputic as the drugs.  

I just want to honor you good people and comment how I love you and thanx for being here.  Very very good work.    

Lyrain - your words were the same we all asked ourselves.  You are normal unfortunately.  It is a challenging treatment with an end.  You are doing great.  While I was on tx, I did absolutely nothing except wipe my _____.  Seriously.  I dropped an egg the first day and just cleaned it up two weeks ago.  I was paralyzed but didn't care.  Just wanted to be still and left alone.  You are an inspiration.  Thank you for being so strong but you don't have to be you know.

[beeblessed]

Hi again.  Yes, I actually listened to the books years ago on audiotape, read by a full cast.  Well written, albeit, eeerie and creepy premise.  The movie (Daniel Craig, Nicole Kidman) too.

I accomplished 2 things on my to do list today.  So tired still but better as the days go by.  Hang in there and I hope you feel less tired/anemic real soon.

Hope this doesn't get to you twice, as MedHelp went down just as I hit post.
Bee

[belle19]

lyra, so glad that you found this forum.  we're all in the same situation for the long haul.  sometimes it's easy and other times it's maddening.  my hgb gets a little low and they lowered my riba.  right now i have 9 weeks left.  i started last june and will end in may.  i've been UND since week 12.  good luck to you.  we're a good bunch here with a lot of info if you need.  belle

[lyrainoxford]

That's so GREAT!  Only 17 days and UND!!!  
It's such a relief to hear that you became a home body.  I mean, not that that's good, but I have felt so miserable about not getting out of my house.  In fact, I've been on this same couch since I got home from work!  It's been a pretty bad day, symptom-wise, though.  It's just a relief to know that I'm not alone.  And looking like ****, that's funny because I can relate.  On the days that I get up and get moving, by the time I get dressed and actually pull myself together, I'm too exhausted to go anywhere!  I keep saying that you have to find the humor in it or it will drag you down.

As far as anemia or low hemoglobin, my physician says that my labs have come back fine.  So, medically, there's no excuse.  Well, except the really big one that this medication will kick your butt!  lol.  I suppose that's reason enough.

Thanks for commenting and best of luck to you on the remainder of your treatment!  Keep us updated!!

[brianmo]

Hi!  Welcome to the forum and the ride of your life!! Yes, your doing the forum right and we can all see each others responses. Sometimes people will send you a note to your profile page too.

Your treatment sounds like its going great!  The lack of motivation  was a shock to me and it hit when I became anemic. 9.2 most of treatment. I have never been unmotivated nor have I ever spent more than 3 hours at home!! LOL.  Boy, has that changed. I go days with staying at home because going someplace is 1, a chore and 2, I usually don't want to be seen, I look like ****.    But, I am almost there, 17 days to go and I have been UND since week 4.   Keep in touch with your doctor, gets lots of blood work done, I did one a week, and keep checking the forum.

MO

[lyrainoxford]

Thanks to everyone who has responded.

Bee - I cannot believe you recognized my screen name!  I read the books when I was about 17 and it has been my preferred screen name ever since!  One day, I plan to have a little girl and her name will be Lyra - it has been decided since I first got my hands on the books!  
I understand what you mean about the To-Do list!  I make one almost every weekend and can cross maybe two things off.  I finally realized that my former one DAY to do list must now be my one WEEK list.  If I can cross off one or two every day, eventually, I'll get there!

ceanothus - less fatigued!  I cannot imagine how the rest of you must feel if I am less fatigued.  According to the experiences being shared, however, I know that I must be.  And for that, I know that I am lucky.  But my heart goes out to anyone because there are days that I feel I can barely go on.  I cannot imagine how tough it must be for you.  I do not know anyone's age on this forum but when I went in for treatment and my biopsy, the doctors and nurses seemed almost in shock that I was 27 and being treated for hepatitis.  I know that I am lucky that I caught it and had the opportunity to do something about it at such a young age. I know that I am the reason that I have this disease - I made a mistake - but I am so blessed to have an opportunity to try and reverse it.  I have made many life changes in the last five years and I know that they are all for the better.

No matter how tough it is to make changes and go through treatment - the one thing that i know is that it is all worth it! :)

[Dee1956]

You are normal, please do not think otherwise
When I tx back in 2008 I would go to work, come home, go to bed and start it all over.  On the weekends, I would stay in bed only getting up to get ready for another day at work.  Took my shots on Fridays and did miss Mondays however I really admire you for working through Incivek, I could not have done that which I just finished
Hang in there everyone is here for you
Dee

[ceanothus]

Oh boy, I got pretty riled up reading your first message- how dare your doctor belittle your fatigue? But then my mood was soothed by reading all the other indignant responses! It got everyone kind of riled up  

Everything you are experiencing is normal except you may be  LESS fatigued than most of us (maybe because you are younger than most of us). I've had all of your symptoms plus wheezing along with that cough, severe nausea during the Incivek phase, rashes from Incivek and a different one from Ribavirin, severe night sweats, low white blood cells, low platelets, and now I'm just starting to get low red blood cells.  I don't work and don't even feel safe driving very far on my own because of a lack of alertness. I feel very happy just to accomplish a single one-hour project each day, but I am thrilled to be in tx and that it has made the virus UND in my blood for the last few months. For a patient who already has cirrhosis, this is a real lifesaver!

I do hope your upcoming therapy appt. helps you get a grip on the problem of feeling worthless when you can't be as productive as you are accustomed to being. That is one of the hardest things that we all have to grapple with - whether the fatigue is from tx or from the liver disease itself as it becomes more advanced. You can get through the physical part of tx much more easily if you aren't beating yourself up emotionally, so watch that tendency carefully, and check in with the forum frequently. This is an amazingly wonderful group of people here! Good luck. 

[beeblessed]

Welcome Lyra!  Love your screen name :)  Loved the books.  What you describe is almost EXACTLY how I felt during this entire process.  Trust me, you are Not alone.  I feel entirely lazy because I have a list of things to do every weekend, but I am lucky if I get to 2 chores.  Normally, I am the multitasker at work and at home, every day.  During tx, that all changed and became a huge challenge.  I thought there was something wrong with me, thought I was being a wimp.  This forum helps tremendously.

Do listen to your body through the rest of this and know that when you come outthe other side, your energy (mental and physical) will return.

Bee

[80mecheng]

I am on Vic, Interferon and Riba and have had the same issues.  By week 18 my hemoglobin had dropped to 9.2 and I ended up on Procrit which frankly has only helped a little and made weekend nausea worse.  I have worked from hom for the last 6 weeks but take at least one sick day per week dealing with side effects.I asked my doctor about it since I thought I would feel better with at least the modest hmg improvement and he stated Interferon is the likely source.  Hang in there and communicate with your doctor what you are going thru.

[crossroadsec]

I got depressed on weekends. Shot on Friday n the fatigue is awful. My grandkids have quit asking if I'm getting off the couch. I watch a lot of Disney channel n cry. BUT... Week 37 w 11 to go. I look like **** n my labs r a mess. But I'm still kicking. Believe me. We get it. Feel the love n buckle your seatbelt. It cam be a wild ride. Sooo worth it. Karen :)
Oh. Spring break! 9 days off work!!! Zzzzz haha

[lyrainoxford]

You're absolutely right!  Feeling like crap for this amount of time is one thing - the fact that it's lasted so long only makes you feel worse about it! LOL.  It's a vicious cycle.  Sometimes, though, I think you just have to laugh about it and know that we are doing this for a very good reason, that it is all worth something and that it is not forever! :)

[pooh55811]

If these doctors had to experience one day of what we experience for weeks and months (and sometimes even years), they would be singing a different tune.They would not be dismissing our symptoms like they are nothing and they would not be trying to make us feel like there is something wrong with us for having side effect. Instead, they would be a lot quicker to offer support and encouragement and to proactively assess and treat side effect (at least the side effects that can be treated).

That is just my opinion, but most if not all of these doctors have never been through Hep C treatment and have probably never been through a long debilitating treatment regimen of any type. They just have no clue how accumulative and debilitating these side effects are and the effect they have on people. It is one thing to put up with feeling like crap for 2-3 days but it is another thing to feel like crap for 6 months or a year.

[lyrainoxford]

I want to say, too, that I'm so sorry for those of you that are experiencing the nausea.  I really haven't felt that much.  That's part of what's so weird about it. Has anyone ever seen the episode of the Golden Girls where Dorothy has Chronic Fatigue Syndrome?  LOL.  She is so discouraged because what she's going through isn't a "visible" sickness.  But what she feels is so real.  I mean, I realize it's a TV show and fictional, but I can only imagine that's how those patients feel.  And I think it applies to us, too.  I constantly feel the need to justify my tiredness because it can't be SEEN.  But it, too, is very real, very powerful... and very debilitating at times.

[lyrainoxford]

LookingForward12 - I am sorry to hear that you are having such a hard time.  I manage to work because I feel I have no choice.  I'm 27 years old so retirement for me is a LONG way away lol.  But congratulations on yours! :)
I have to continue working or I couldn't pay for my medications.  That's just it - it really is such a TASK to get up and get going and pull at least 8 hours at work everyday - usually more (at least in the last two months due to huge deadlines).  So after pushing myself to meet those 8+ hours, I am worth almost nothing when I get home.  

Pooh5581 - You're right - small projects make me feel so accomplished and proud.  I, too, have a cat and cleaning his box feels like such a task sometimes.  When I get it done, I'm ready to give myself a gold star!  Or making the bed, washing dishes... all these "small" things are so huge now.

[Advocate1955]

Most of the symptoms you have described sound normal for someone who is doing therapy for Hep C.  With the added component of Incivek, it seems that people feel pretty exhausted most of the time.  My husband finished the Incivek portion of triple therapy right before Christmas, and he was feeling pretty rugged about that time.  Within a week of finishing Incivek, he felt significantly better.  He's been on Interferon and Ribavirin twice before, so we knew that there would still be symptoms after finishing Incivek.  Hopefully you will feel better in a few weeks when you're done with Incivek.
Advocate1955

[lyrainoxford]

Even when I respond to one individual person, I hope that everyone can see it. You all have no idea how much you've brightened my mood and my day just by sharing your experiences and confirming that this isn't just all in my head.  This forum seems like a truly wonderful thing and I'm glad to have found it!

It seems like as the weeks go on, I forget more and more how it felt to feel "normal", if that makes sense.  Sometimes, when I'm so tired, I would think "Am I using treatment as an excuse to be lazy?"  But I know that the answer is no.  I HATE feeling like this and I would NEVER make myself feel so unproductive intentionally.  I just have to keep reminding myself that this is for a GOOD reason and that it is not forever.  

[pooh55811]

"... but I feel very unproductive compared to what I'm used to."
--------------------------------------------

That was one of my biggest problems (besides the anal problems, the rash, and the nausea, lol). It used to get on my nerves. I felt so frustrated because I wanted to get some things done and just could not get organized to do them or concentrate long enough to do them or even get motivated. I have more or less (now 6 months into 48 weeks of treatment) come to terms with it. I quit stressing about it. I quit trying to do big things and now concentrate on doing some smaller projects (dishes, vacuuming, cleaning litter box, laundry, sorting photos, cleaning bathroom) instead of getting upset that I can not do my geneology research or even read a book. I do listen to audio books, watch on-line symphony concerts, and  watch educational DVDs. I spend a lot of time researching about Hep C and I spend a lot of time on this forum (which helps a lot). I try to do at least one productive thing every day, I mean things that take some energy, like cleaning.  I have just come to terms with the fact that these meds are doing a big number on my body and I need to go with the flow until treatment is over. I have my eye on the prize (SVR) and I will do just about anything to get rid of this virus. So if I "lose" a year (and I do call this my lost year) it will all be worth it if I can be rid of this virus.

You will do fine. Just stick around here for support and answers to your questions.

[LookingForward12]

Wow!  Am just incredibly impressed that you are still working! I couldn't do that.  Waited until retirement to begin treatment and even with no set schedule, other than some volunteer activities, I am barely making it from day to day.

My own incredible tiredness and lack of motivation, together with cough, was caused by my hemoglobin dropping so low and becoming very anemic. Stay on top of that too. I required a blood transfusion at nine weeks.

Keep checking in to the forum. There is a wealth of knowledge and support here.

[orphanedhawk]

You are so right, nobody really knows what this crazy treatment is like unless they've been through it.

I had shortness of breath and a dry cough which was relieved when my dosage of ribavarin was reduced.

It's important to make a list of questions to bring to your doctor ( hopefully you are seeing a hepatologist) I know if I don't write them down, I forget.
Often the side effects can be managed but you have to let your doctor know.

For some basic hep C information, try looking at hepcadvocate.org

Oh, and welcome you not alone !

[lyrainoxford]

Thanks for that comment, as well.  I think that she's trying to be encouraging and motivational when she says things like that to me.  I don't think she knew how it beat me down... and it did.  It made me feel like I was not handling it as well as every one else or that I was weak.  
It's so weird to go from being so productive to feeling accomplished just because I got my shower and fed the dogs.  My live-in boyfriend, who is also very supportive, works out of town four days a week.  I brag to him all the time when I get the dishes or laundry done.  He praises me like I've won a gold medal haha.  I think he knows that I am doing the best I can.  
It's just easy to get discouraged - the sun is shining here and it's so warm... and I can't even get out to enjoy it.  It makes me feel... lazy.  But it's not laziness - it is legitimate TIREDNESS.  Or at least, I hoped so.  Thank you SO much for sharing your experience with me!  You have no idea what a beacon of hope you truly are!!

[working dog]

sounds to me like your doing pretty good...i wouldn't push it...and just because you stop incivek soon don't expect all the symptoms to go away...stay on the forum and ask questions...theres lots of help here..good luck....billy

[lyrainoxford]

Thank you SO much!  I hope I'm doing this forum right LOL.  When I say I'm on the verge of a breakdown, it is because I haven't had much support.  A huge weight has been lifted just by hearing that what I'm feeling is OK and NORMAL.  I mean, I have had support but not by anyone that has been through this treatment so no one could really tell me if what I'm feeling is standard.  Like I said, I never knew these forums were out here so I have pretty much been doing this on my own.  
I am on antidepressants and for the most part, my moods are FAIRLY stable.  I get upset sometimes and irritable but it is manageable.  I have an appt with my regular therapist at the beginning of April.  My mood is probably exacerbated by the fact that I worked very long hours M-W of this week (830 a.m to 1130 p.m) and was undergoing a regular state audit on Th/F at work.  VERY stressful, very exhausting.  Probably didn't make this weekend any easier.  
I am used to working full time and going to school part-time, along with regular housework.  I had to drop school during treatment but I feel very unproductive compared to what I'm used to.  It is good to hear that I'm not alone!
And I hope that your energy comes back.  I'm glad you made it through Incivek.  I am literally counting down the days :)