Need Some Encouragement

I feel like sh@t. I have not been out of bed in a week. My legs and arms burn whenever I walk and then I am totally out of breath. I read the posts on exercise and was amazed. My hat's off to those of you who continue. My Dr. took me off Procrit for 3 weeks due to sides. My numbers tanked again and he put me back on 40,000 units once a week. I got the shot on Friday and have had progressively less energy and more trouble getting around. How long does it take the procrit to work? I don't remember the first time because I had brain fog.
I only have 12 weeks left as of tomorrow but I sure don't want to feel like this for the rest of the time. It does seem like it is getting worse at the end. Thanks to all of you who are here giving your wisdom and encouragement to me and to others.
I'm taking it one day at a time but each day is way long! By the way, britgirl, I am reading a book a day and watch Jeopardy at night so my brain will not be as flabby as my body.
God bless you all!
Barb

[lizzee]

HI THERE,
I NEVER HAD TO GO ON PROCRID BUT I WAS SOOO SICK.
I FEEL FOR YOU...
IT SEEMS AT THE END, IF U HAD A RUFF TIME..IT GETS CRAZIER.
BUT I BEGAN TO COUNT DOWN..LIKE 8 WEEKS TO GO, THEN 7...
I NEVER MOVED TOWARDS THE END. I COULDN'T ...TO TALK OR WALK WAS TOO MUCH.
U WILL GET THERE...AND ALL WILL BE WELL.
THEN ITS LIKE BEING FREE AGAIN!
BE WELL,
LIZE

[Eyedeas]

Hang in and atleast execise your fingers by typing us messages.  We're here to hear you!  Sorry it's so rough, hopefully between you and the doc you can get some relief.

Kim

[Micro2]

Thanks for all your posts !  I too am feeling like I am at the bottom of the ocean these days. This week will be shot #51. I have NOT cleared the virus but have decreased it greatly. On the 28th my hepatologist will make a new tx decision. This is my second round of Procrit. It took 3-5 weeks for me to feel the effects this time. The pharmacist said that procrit can take a while so...be patient. I am sooooooooo ready for this to be over!! One thing for sure...I was told today to stop the Ribavirin after 52 weeks no matter what we do! I AM looking forward to that! Hang in there!

[minneapolis]

i was reading that ted williams  has been decapitated and separated from his body in the deep freeze. who is ted williams? what is the song: never is heard a discouraging word, and the skies are not cloudy tonight. these are my words of encouragement. 45 weeks ago seems like forever. the next three weeks seem like a real long time. we all made the choice to do this so ya gotta keep your nose to the grindstone and hang in there. don't let your clinic forget about you. if you  feel like total **** call them. i have done that more than a few times. two different clinics belonging to the same doctor conglomerate may have completely different methods for handling side effects. i found that out,late but better than never. lynn

[britgirl]

Sorry to hear you are feeling so rough; sounds really hard for you. Hope things turn around. From one flabby body to another.....

[psychdoc]

Thanks for the kind words folks! They really do help. I'll just keep plugging away. My Dr. is very responsive and has treated every side effect that I have had. I'm just afraid he will say to stop tx and I'm too close to the end to do that!
Thanks again,
Barb

[Galen]

Hey Barb, I've been on Procrit for 33 weeks now, 30,000 every other week did it for me, but at about week 33 my numbers started tanking again and they upped it to once a week.  It took about 2 weeks to get my numbers back up and I've felt better since then.  Hope you bounce back sooner than that, but it takes a while for the red blood cells to start producing enough to make a difference.

[latrobe]

barb--
the end is a struggle. hope you're drinking plenty of fluids--water and maybe a little gatorade...this gets so intense.
one day i hope i can say hep c is the best thing that ever happened.  twisted thinking , huh?
hang in there...keep talking to your doctor.  if you need to stay in bed, stay in bed. get someone to give you clean sheets.
are you eating?--drinking some supplement drinks?
trying to send you a zap of energy...my horoscope said i can do that today...(hehehe)
keep up the struggle, friend.
macky

[MajNeni]

Hi, Barb,
I'm sorry the truck hit you like this.  Usually the sides change, so it's probably about time for this one to leave.
Does laughing hurt?  Can someone bring you some silly funny videos?  Laughing is aerobic for the heart, too, and a good pain killer!  

I don't know where I got this, maybe from someone here, but maybe it's good for another go-around and giggle.
**********************************************************
Doctors Signs in Small Town

Two doctors opened an office in a small town.
They put up a sign for their establishment:

Dr. Smith and Dr.Jones: Psychiatry and Proctology.

The town council was not happy with that sign, so
the doctors changed it to "Hysterias & Posteriors.

This was not acceptable either, so in an effort
to satisfy the council, they changed the sign to
Schizoids & Hemorrhoids.   No go!

Next they tried Catatonics & High Colonics.
Thumbs down again.

Then came Manic-depressives & Anal-retentives.
Still not good.

How about Minds & Behinds? Unacceptable again.

So they tried Lost Souls & Ass Holes. Still no go.

Next they tried Analysis & Anal Cysts.

Then went to ?Nuts & Butts?

Followed by ?Freaks & Cheeks?

Even tried ?Loons & Moons? Not acceptable either.

Almost at their wits end, the doctors finally
came up with a business slogan they thought might be
acceptable to the council:

Dr. Smith and Dr. Jones, Odds & Ends

[willing]

twelve weeks - you're getting *so* close!  I'm starting my countdown at 20. Exercise, tv, laughter and reading all sound wonderful but sometimes they can be as far as out reach as running a marathon. Here's my basic, three-step, program to getting through the rough times - it hasn't failed me yet:

1) breathe ( I try not to make too much of an obligation out of this, figuring that if I just can't manage, things are about to get a lot easier..)

2) be glad you're still breathing (this is an optional step, I reserve it for the easier days, sometimes it's best to skip it )

3) acknowledge you're now closer to (a) being done *and* (b) being dead (the beauty of this program is that both are true so, depending on the day, you can focus on one or the other).

oh, at the end you're supposed to remember to go back to (1) - but again don't stress out, this kind of takes care of itself.

[mbaez1953]

Hang in there you will feel better make sure you drink plenty of water good luck, you are in my prayers.
I'll take this moment to ask a question if I may,I just got my results from my three month pcr and i'm very confused I was hoping for undectable and have been complient with my meds from the start.

when I started tx my heptimax t was as follows

4-22-03   real time pcr 201000 iu/ml
4-22-03   real time pcr 5.30   log iu/ml

4-24-03   real time pcr 590000  iu/ml
4-24-03   real time pcr 5.77     log iu/ml
I don't know why they did two readings from same sample
and they were so different,now new pcr test as follows
nurse left message on my voice mail.

real time pcr is 1400 iu/ml

real time pcr  3.15   log iu/ml

my ast went from 41 to 31
my alt went from 41 to 25

should I be very disappointed can I still clear my self from this, has this all been worth it, need advice I am very confused right now and not feeling my best thanks for any help morgan

[AK - Hepper]

you should not be disappointed at all, that is a good response.While you aren't totally undetectable you are really close and are still over the desired 2 log drop as I learned just the other day. The big test is if you go all the way undetectable at 24 weeks. Good luck with the next pcr, I go for my 24 weeker next Friday.    Timbo

[latrobe]

y

[txpartner]

no new threads available today, so this is sort of related.  hubby at 12 weeks PegIntron combo therapy. started at 9,300,000.  viral load 12 weeks at 500,000.  we thought he would clear, or be really really low.  should he be discuraged?  quit?  is his feeling awful all the time worth it? or is it too soon to be really clear when the starting counts were so high?

[Commdude]

<a href="http://www.oddtodd.com/index2.html">Goofy humor</a>

....This one might take a while to download on a dial up modem....


Oh...hey guys!  Just though I'd throw in some "Commdude" thoughts....

Ya know...as much as it hurts from time to time, it all does pass.

One month post tx...feel like I just got out of jail..what a krazee and lonely experience that was.  A 4000 mile round trip drive to California through the desert was excellent post Tx therapy.  Feels good to be somewhat clear headed once again.  

This site and the feeling of community here made it all bearable and was my lifeline, as well as alot of other people.  Meeting total strangers from all walks of life here without egos or agendas made it all that much more bearable.  Not too many people can understand that.  Trying to explain to someone what you just went through or are going through draws alot of blank looks and confusion.  

Was definitely well worth it, though.   After being totally saturated with those damned pills and shots, it's worn  off quite a bit.  Can finally hold a conversation without staring out into space in the middle of one or walking around in circles in my back yard.   And I can walk without the "corncob in the butt" induced pain again!  Whew!

Life does get better knowing that you did you did  best to conquer the dragon and not be a part of either killing yourself of perpetuating this damned virus.

So...I guess the point is, is that that with all the pain and ****....

Hang in there, man!

[ral]

Stay with it your a trooper

ral

[Ambush]

Hey Morgan.......That's great news!  Good job.  I am getting my 12 wk results tomorrow at noon.  I am hoping for as good a report.  I'm sorry you are not feeling too hot today, but your struggle is worth it....Remember that!  We're pullin' for you.
ambush :)

[willing]

this is a tough decision - your husband's viral load is about 5 times higher than the "2log drop" or 100-fold reduction at weeks 12 that characterizes responders.

The statistics gathered from the standard clinical trials are pretty clear : (see <a href="http://jac.oupjournals.org/cgi/content/full/51/3/487">article</a>)

"Recent studies indicate that the early viral response at 12 weeks with combination peginterferon and ribavirin therapy also offers excellent predictability, especially NPV. A recent analysis by Davis,6 who accessed the combined peginterferon -2a and -2b + ribavirin databases, showed that an early viral response at week 12 would result in missing almost none of the non-responders (i.e. 98?99% NPV), and result in cost savings of 16% compared with the strategy of treating all genotype 2/3 patients for 24 weeks and treating all genotype 1 patients for 48 weeks. Thus, as with pegylated interferon monotherapy, the decision to stop or continue therapy for pegylated interferon + ribavirin combination treatment can be made at 12 weeks.

This strategy can be further refined according to the HCV genotype. The week 12 early viral response produces a 98% NPV in genotype 1 patients, so clearly the 12 week stop rule is applicable in this group. In genotype 2/3 patients, 97% show an early viral response, so calculating NPV becomes unreliable because of the minute sample sizes (in the peginterferon -2a + ribavirin database, only four genotype 2/3 patients did not show an early viral response). Given these considerations, the recent NIH consensus conference recommended, quite appropriately, that genotype 2 and 3 patients simply be treated for 24 weeks without bothering to check week 12 HCV RNA.6,22  ".

NPV - is negative predictive value the chance of correctly identifying a non-responder - thus according to the available  clinical trial data there is only about a 2% chance that if your husband quits at this point, he would actually have been among the long-term responders.

On the other hand, these probabilities apply to the "standard" 48-week protocol only. You don't say what your husband's liver condition is. If success of the therapy is critical it may be worth pursuing a non-standard treatment, such as a longer course or higher dosages. If your GI isn't interested in a non-standard tx you may need to check at a local medical research center.

[indyjo]

hang in! you have been so supportive to others in the past. haven't seen you in awhile. maybe cause you are feeling so bad. i'm sorry. but like everyone has said... it will pass. be good to you!

[imblessed]

Sorry about using this thread. Galen I noticed you live in Fl. Where in Fl. do you live. I to live in Fl. I am getting ready to start tx. Just waiting for dr. to call with meds. My hair is about 2inchs past my shoulders. Should I go ahead and get it cut shorter?

[fullofhope]

The emotions you are feeling right now are normal.  As I was reading your post the feelings of panic that I felt when I tested positive.  It is easy to get caught up in the panic and the unknown.

Others on this site might be able to give you a more up-to-date estimate of cost - but medical website I read said that combination treatment of PEGylated interferon with ribavirin costs about 2,000 a month.

I am not on TX, so I can't give you a first hand account on sides (but there are many people here that will gladly help out...and always read through some past posts to see if someone brought it up already) - but the range of sides go from one extreme to the other.  There are some that have minimal sides and others that get knocked off their feet.  

Regarding work: When I thought I was going to have to start TX, my attitude about it was that I was going to continue to work as long as I could - because there was the chance that I might not have severe sides and I couldn't risk losing my job because I was out sick when I might not have needed to be.

It appears that drinking lots of fluids before starting TX and during TX (and maybe some gatorade as mentioned above) helps keep the sides at bay somewhat. Getting lots of rest and not pushing yourself too much is also a good idea...maybe even starting now.  Keeping your doctor aware of the sides once you start treatment will allow you to perhaps get some meds or concoctions to combat them and ease them up a bit so that you can continue to work and support your family.

As for insurance covering everything - I would read up on your policy just to make sure so that you are not surprised by a bill in the mail.

All the best to you sgabb as you start your TX - there are loads of people here who have been where you are and are willing to help - so keep coming.

[simpleman]

I have 15 weeks left and am having much more trouble this last half than the first half. I have good days and bad days for no apparent reason. I do have a good doc though. He told me wait and see if my toe stopped hurting because of gout. He was right it went away as quick as it came. He did give me some pain pills. If you trust ypur doc talk to him. I've taken 40000 Procrit once a week since week 10. I could never feel a difference but it kept my blood counts up so I could stay on full dose. We are getting close now. On the days you feel bad send me some of it and I'll handle it for a couple of hours. Maybe you can do the same for me. Good luck

[mikesimon]

I know exactly how you feel. I look at it like a long race or, in my case, walk. If we just take it one step at a time and don't look ahead the finish line suddenly appears. I gave up earlier than my doctors would have preferred last year. I relapsed quickly. I don't know if the outcome would have been different had I continued for 2 more months like they wanted me to. I had done 48 weeks but cleared late and I was clear and just didn't feel I could go on any longer. I could have. I just quit. Now I look back and wonder if things could have been different. Now I have till June or July 2004 and I started in Jan 2003. Unless I have a coronary event or the like I will not quit. Just one day - one shot - one handful of ribavirin at a time. And I'm not looking ahead past right now. That's all I can say. Good luck Barb and I hope you feel better soon. Mike

[AK - Hepper]

Hey Mike, you said last year you cleared late and the docs wanted you to extend out a couple months, just wondering: Did you clear between 12 and 24 wks. or was it after 24? Just trying to get an idea on how long I might need to go pending my 24 week pcr coming up; didn't clear at 12, hoping to at 24. Thanks...Timbo

[mikesimon]

I had to look that up. I started tx around early Dec 2001. I tested clear August 8,2002 but I suspect I may have cleared a little sooner but had no PCR performed. It's a long and boring story as to why I was so cavalier about my tx. I stopped in November 2002 having remained clear throughout and then showed a viral load of 6.8 million Dec 16,2002. Do you know your load from the 12 week test? I really don't know for sure how long after clearance we should go or even if it will have a better result. I just have no other alternatives and am hoping for the best this time. Good luck and keep us posted. Mike

[AK - Hepper]

I started with 376,000, 990 at 12 wks. I've seen where lately they recommend 40 more weeks after clearing, but I'm only doing 3/4 dose of interferon so I'm pretty conflicted, probably should do at least an extra 2 or 3 months

[mikesimon]

Yea, I'd probably want to go a little longer if I were you. You're 12 week load is low but you weren't that high to start. I'm confident you will be undetectable at 24 weeks and could have been by the 13th or 14th week. I had a load of 12 IU/ML at 12 weeks this time but I started with 4.5 million at the start of tx so I felt pretty good about clearing. But there's nothing like seeing it in writing. I should know why it is you are on a reduced dose of interferon but I do not. If you care to say I would be interested to know. Are you also on a reduced dose of ribavirin? If you wlould rather not get into this I will understand. I'm just curious and you know what curiosity did. Anyway I wish you the best. Mike

[AK - Hepper]

They lowered the inf after my 4 week labs, absolute granulocytes went down to .7, wbc-2.1. Both edged up a little after the adjustment, still low but acceptable so no neupogen yet. Still doing the full 1200 riba; hgb 11.8 so still acceptable there.
I'm thinking (hoping) I cleared at 16 weeks because all of a sudden started having trouble sleeping for a couple of weeks, maybe my body was shocked at the virus being gone? Probably just wishful thinking, trying not to get ahead of myself too much.
Nice 12 week results for you, keep it up!

[sgabb]

keep getting cut off from AOL....  
    greetings...  found out a few months ago that I have hep C
had my meeting with my doc today about my Biop.  genotype test was screwed up and have to tke it agian, but he did say I have sceroisis of liver and my count is over 5 mil.  I have an inflamation (inflammation) to my liver scale of one to 18 mine is an 8 and that is cause for concern.  He did decide to start me on a treatment program as I am only 42 and am only overwieght with high blood pressure, should be a good candidate and plans on tx to last a year from what he has seen.  My question for all of this is cost and sides.  I have insuance but not really great.  No disabillity.  I have a very physical job, and due to my wife going to school for the last 8 months, we live from paycheck to paycheck and are not making it.  She can not find a job for what she was trianed for now.  What can we expect of all this?  I have been reading some of the posts for a month now and am scared out of my wits as to what may start to happen. any suggestions?   I will be getting more involed aroud here and have asked my wife to start reading here also.  Thank you for your time and God Bless us ALL!!!!

[cc2]

Hang in there, I also got worse at the end, but you can do it...your count down has started... Take care

[mbaez1953]

Thanks for your thoughts, Maybe I expected to much too soon I will continue at full dose and hope to clear at 24wks you guys are right I am very close and I can do this.some one sent me this, I thought maybe some of you would enjoy just go here:  http://members.aol.com/CuttyhunkRose/geese.html
thanks again morgan

P.S. ambush I was thinking about you I hope all went well with your pcr results,

[Ambush]

Hi Morgan,
Had a heck of a time with the power outage and finally was able to report results on another post (under Friday Fight Song).  I started at 576,000 iu/ml and my 12 week (actually drawn at 11 weeks) was 6,160 iu/ml.  Was hoping to go all the way, but at least this is near the 2 log drop.  WBCs are dropping and he is considering neupogen instead of dose reduction (I think I like that concept?).  Doc decided to let me go another month and make the decision then.  Hope I can stay away from that, but whatever it takes, I'll do.  At least I gained a pound instead of the 5 I lost last month.  Must be all the ice cream :)
Been wondering about countrynurse.......started the same day as we did and haven't heard from her.  Hope that means all is great!
Well, Morgan, we're 1/4 of the way there....let's keep up the fight and get this behind us.  Take care......and thanks for thinking of me.
ambush :)

[MajNeni]

Have you heard of Colchicin?  (Sp.)  It helped my Dad a lot with his gout, both with pain and prevention.  Maj Neni

[giddyup]

Thanks for the goofy humor twas just what I needed today. Glad to see you post. A road trip after tx sounds like a good idea  glad it worked for you. Keep taking it easy.

[snakebyte]

I'm new to this but feel we need all the info we can get so here goes. I failed the old Intron therapy years ago & have since had a liver transplant. Of course the hep c came back & began to devil my new liver so I went on the PegIntron-Combo. In fact I am in my last (48th) week of therapy right now. Transplants have a 50% lower incidence of clearing the virus than a non-transplant with Pegintron.  I was clear at 3 mos., 6 mos, and hopefully will remain clear, so this medicine works far better than the old stuff. However I found the side-effects so debilitating & mentally horrible that had it not worked I would have got off it. Anyone having severe mental or blood problems should get in & get on some procrit, plus I think they recommend all patients get on antidepressants before starting therapy, and frequent blood tests. If it works for you I would hang in there, but if it doesn't I wouldn't prolong the misery. It's too hard on your body to pursue unless you are showing clear. If you are so tired you hardly feel like walking across the room & are puffing hard you need to get in & check your blood. I was hospitalized twice for 2 pints of blood each time. Hang in there, I know it's like riding a bull, but if it works-praise the Lord.

[MajNeni]

I just swept down here to see if anyone is stuck.  Chances are that hardly anyone will read a post this far down; you'll get more response if you add a comment under one of the newest posts.  It's a good idea to address your message in the "Comment to" box (above), giving either a nickname or a topic.  
So you've done your last shot?  Good luck now, just stay clear!  Best wishes,
Maj Neni